Am I attached? A patient-partnered approach to creating infographics about attachment to primary care in Ontario, Canada

Am I attached? 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A patient-partnered approach to creating infographics about attachment to primary care in Ontario, Canada Maggie MacNeil, Aya Tagami, Peter Sheffield, Vivian R Ramsden, and 17 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-4946543/v1 This work is licensed under a CC BY 4.0 License Status: Published Journal Publication published 04 Nov, 2024 Read the published version in Research Involvement and Engagement → Version 1 posted 4 You are reading this latest preprint version Abstract Background: Having a primary care provider is associated with better care experiences and lower care costs. In 2021, INSPIRE-PHC released Primary Care Data Reports (PCDR) - publicly available summaries of administrative billing data about how populations in each of Ontario’s 60 health teams engage with primary care. Given the characterization of Canadian primary care systems as ‘in crisis’, publicly available data about primary care at the regional level presented a significant opportunity for knowledge mobilization. An understandable resource could ground the public conversation about primary care access in data. Recognizing the role that lived experience plays in ensuring the public understands research findings, a partnership between patient advisors, Ontario Health Team (OHT) representatives, researchers, and trainees was established to co-produce public-facing infographics of PCDR data. Methods : Evidence-based guidelines for public health infographic creation and elements of transformative action research guided a six-meeting process to engage up to 14 patient advisors, three OHT staff and two primary care trainees. Patient advisors were affiliated with a provincial patient-oriented primary health care research group or a Hamilton-based OHT. Ninety-minute meetings were conducted virtually, and notes were shared with attendees to ensure they accurately reflected the conversation. Two consultations with OHT-affiliated primary care providers provided direction and ensured project outputs aligned with local priorities. Results : Project partners shared feedback on draft infographics, audience identification, priority elements from PCDR to include in the infographics, and aesthetic features (e.g., headings, colour scheme, charts). Project partners felt the most important metrics to convey to the public were those that simultaneously reinforced the benefits of primary care on individual health outcomes and health system costs. Conclusions: Patient engagement in research is becoming widespread, but co-developing knowledge products with patient and health system partners is less common. Our approach to engaging patients prevented both oversimplification and unnecessary complexity in a public-facing visual about attachment to primary care. patient engagement patient and public involvement patient partner community-based participatory research primary care research primary health care health services research health communication big data Figures Figure 1 Figure 2 Figure 3 Figure 4 Figure 5 Plain English Summary Having a primary care provider is associated with better healthcare experiences and lower costs of care. In 2021, the Primary Care Data Reports (PCDRs) were released to the public. They contain administrative data about how patients engage with primary care in each of the 58 Ontario Health Teams (OHTs). We created an infographic with patient advisors, OHT representatives, researchers, and trainees to share this data in a way that can be understood by everyone. Infographics use images to help people process information faster, which can make health-related topics easier to understand. By understanding the value of primary care, people can participate in conversations about how to ensure primary care is accessible to everyone. Engaging patients is becoming common in research, but collaborating with patient advisors and health system partners to create visual summaries is less common. We had six virtual meetings that were 90 minutes each with up to 14 patient advisors, OHT representatives, researchers and trainees. We also consulted with primary care clinicians. The patient advisors helped decide who our audience would be, which information from the PCDRs to include, and how the infographic would look. They told us it was most important to highlight the benefits patients can get from primary care, and the impact primary care can have to reduce health system costs. The primary care clinicians ensured the infographic reflected local priorities. Working with patient advisors and OHT representatives helped us create an infographic about PCDR data that can be easily understood by the public. Background Health research that engages patients as partners in research teams is an increasingly widespread practice. Partnering with people with lived expertise can bring value to health research, ensuring that research priorities, questions, and approaches are relevant and have the potential to improve patient outcomes [ 1 ]. Patient partners are motivated to become involved in health research by their desire to improve health systems; many continue their involvement when they see the impact their contributions have made [ 2 , 3 ]. They are most frequently engaged during knowledge mobilization, often supporting the uptake of research findings among diverse knowledge user audiences, including practice, policy, and importantly, the public [ 4 , 5 ]. As the foundation and entry point to health care in Canada, primary care (PC) can benefit from engaging patient and community partners in research. In Ontario, a province of 14 million people, primary care providers receive nearly one million visits per week, and two-thirds of all daily physician visits are to PC [ 6 ][ 28 ]. This suggests that PC may be the sector of the health system where contributions from patient partners to health services research and health system decision making stand to have the greatest impact. Previous authors have shown the impact of patient partners in creating lay resources specific to PC. For example, Archibald and colleagues describe codesigning video resources with patients to increase understanding and reduce shame around the concept of frailty [ 7 ]. Patients have also partnered with researchers to design infographics that present patient-reported outcomes data from a community health survey back to the individuals who participated in the survey to support comprehensibility and action [ 8 ], as well as promoting healthy behaviors for community members with varying levels of health literacy via infographics [ 9 ]. Given the demonstrated impacts of patient partners on creating materials for lay audiences, and the growing consensus around the need for better integration of patient expertise in PC research [ 10 – 14 ], this study aimed to engage primary care patients/caregivers, providers, and local health system representatives to create lay-friendly visualizations of regional and provincial primary care administrative data. Canada’s healthcare system Canada’s universal healthcare system supports the health of Canadians and involves funding and policy direction from federal, provincial, and territorial governments [ 15 ]. The Canada Health Act ensures that all eligible residents of Canada, including Indigenous peoples (First Nations, Inuit, and Métis), have coverage by a provincial or territorial healthcare insurance plan for all medically necessary health services [ 15 , 16 ]. In addition to providing financial support for provincial and territorial health services, the federal government is responsible for funding or delivering direct healthcare services to specified groups of people including Inuit, on-reserve First Nations, Canadian Forces personnel, persons in federal penitentiaries, certain groups of refugees, and veterans [ 17 ]. The federal government and the ten provincial and three territorial health systems function independently of each other and are responsible for the management, organization, and delivery of healthcare, adhering to the conditions of the Canada Health Act to access federal funding [ 16 , 17 ]. The Canadian healthcare system is characterized by the involvement of governments at multiple levels to support the health of Canadians through the provision of primary care, and the aspiration to provide primary health care [ 18 – 20 ]. What is primary (health) care and why is it important? The terms primary care (PC) and primary health care (PHC), while often treated as synonymous, refer to different concepts [ 21 , 22 ]. PC is one component of PHC and refers to first point-of-contact services provided to individuals and families to sustain and promote their health and well-being across the lifespan [ 21 – 23 ]. PC services are delivered by providers (e.g., family physicians, nurse practitioners) working together or separately, and occasionally in conjunction with teams of interdisciplinary providers [ 21 , 22 ]. PC has been associated with better patient outcomes, lower rates of hospitalizations, and reduced Emergency Department visits, resulting in lower healthcare costs [ 19 , 24 , 25 ]. People who regularly receive PC are healthier, have longer life expectancies, and have lower mortality rates associated with heart disease, cancer, or stroke [ 24 ]. Furthermore, patients who receive PC from a consistent provider over time are happier with their care and more likely to follow medical advice [ 24 ]. PHC is a broader, more comprehensive term that describes a system-level approach to organizing PC services, using a population-based approach to ensure care is universally accessible, tailored to community needs, and explicitly delivered by interdisciplinary teams working in community-based organizations [ 22 ]. Rooted in a commitment to enhancing equity and social justice, PHC focuses on community and individual health while using population-level health and policy approaches to promote and sustain health (e.g., improving nutrition, water quality, and sanitation) [ 21 , 22 ]. It therefore includes sectors of health (e.g., public health, community-based social services) beyond primary care [ 21 , 23 ]. Though there have been calls for, and reforms aimed at moving towards providing comprehensive PHC, services in Canada have been argued to be more accurately described as ‘primary care’ [ 26 – 28 ]. Developing a high-performing PHC system that upholds the values and needs of the population is essential for the physical and emotional well-being of Ontario residents [ 18 ]. Many Canadians access PC services like preventive care and care and management of chronic conditions [ 19 , 24 ]. However, as of September 2022, over 2 million people in Ontario do not have a regular PC provider. This number is expected to continue to rise due to population growth and reductions in the supply of primary care providers [ 29 ]. Additionally, the COVID-19 pandemic exacerbated preexisting stressors in primary care [ 30 ], increasing the demand for primary care services (e.g., increased complexity of patients post-infection, backlogs created from forgone care during the pandemic [ 31 ]) while simultaneously decreasing the supply of PC providers (e.g., further reduction of interest in PC as a speciality among medical graduates [ 32 ], accelerated retirements of PC practitioners in response to administrative burdens of managing their practice during a pandemic [ 33 ], health care providers transitioning away from roles providing direct care to patients [ 34 ]). In Canada, this situation is widely acknowledged as a health human resource crisis in primary care [ 35 , 36 ]. PC in Ontario Ontario’s healthcare system has undergone several reforms to create a high-performing system and best support the health of residents[ 37 ]. The introduction of Ontario Health Teams (OHTs) in 2019 can be seen as an example of reform to advance primary health care systems, (versus one to improve primary care service delivery). OHTs bring together self-organized groups of regionally-based hospitals, primary care organizations, and community services providers as well as representatives from long-term care, mental health, and paramedicine to integrate care across sectors, improve patient experience and reduce costs, using a population-based approach [ 18 , 38 – 40 ]. Modelled after accountable care organizations in the United States, each OHT will aim to demonstrate eight requirements, or “building blocks” (Table 1 ) [ 38 , 40 , 41 ]. Like accountable care organizations, OHTs were designed to align with the Quadruple Aim, a framework for healthcare system quality introduced by Bodenheimer & Sinsky [ 42 ], that places equal emphasis on 1) patient experiences of care, 2) provider experiences, 3) improve population health, and 4) reducing costs [ 38 ]. More recently, the Quintuple Aim has also been referenced as a framework guiding healthcare reform in Ontario. The Quintuple Aim recognizes equity and accessibility are necessary features of effective healthcare systems [ 43 ]. OHTs are entities responsible for delivering care to a defined group of patients based on their specific needs. They require health and demographic data to understand both who their patients are and the needs of the populations they serve. OHTs receive provincial data and support (e.g., advice on implementation) to understand their population and health services use at a high level. Supplementing this high-level data with a more nuanced understanding of how each OHT population engages with and utilizes primary care specifically is necessary, given that the majority of healthcare is provided in primary care. Table 1 The eight building blocks of OHTs at maturity [ 40 , 41 ] 1 Serve a defined patient population based on geographic location, local factors, and how patients access care in that region; 2 Provide comprehensive and integrated care for all conditions except those that require highly specialized care; 3 Enhance community engagement, patient partnership, and system co-design where patients and caregivers are appointed to leadership positions; 4 Deliver comprehensive and integrated care that includes round-the-clock support for system navigation; 5 Incorporate digital health solutions to support ongoing improvements in healthcare quality, healthcare delivery, and patient experience; 6 Determine governance structure and working within a single framework that ensures clinical and financial accountability; 7 Utilize a funding and incentive structure based on the needs of their patient population; 8 Provide care based on evidence and clinical standards, focusing on ongoing improvements in healthcare quality and using the quadruple aim metrics to measure performance Data and Patient Engagement in Primary Healthcare INSPIRE-PHC (Innovations Strengthening Primary Health Care through Research- Primary Health Care) is a provincial research and policy partnership that produces primary care research, data support and expertise for health policy in Ontario. Their Primary Care Data Reports (PCDRs) address gaps in freely accessible, region-specific primary care data [ 44 ]. PCDRs are composed of Billing Data from primary care providers which contains data that can help regional health systems in Ontario better understand the people they care for including their: age, sex, income, health status (including diabetes, frailty, congestive heart failure, mental health condition), health care use (e.g., Emergency Department visits, hospitalizations), visits with primary care providers (number of visits, follow-ups after hospitalization) [ 45 – 47 ]. First produced for the 2018–2020 period, these reports represent a 2-year retrospective synthesis [ 48 ]. Some allow for primary care data metrics to be viewed publicly across other geographies of interest (e.g., reported by census tract and public health unit). This accessible, region-specific, publicly available data is foundational to plan health systems that advance the Quintuple Aim: better care outcomes and experiences for patients and caregivers, more resource-efficient health care systems, improved provider experience, and health equity [ 49 – 51 ]. The concept of attachment enhances understanding of population health by grouping populations according to whether and how they receive PC services. Each OHT can access a spreadsheet outlining their population profile, organized by type of attachment to primary care (‘attached’, ‘uncertainly attached’), prepared by INSPIRE-PHC researchers. The PCDR attachment algorithm considers patients to be attached in one of four ways [ 45 ]. The most common way patients are attached is by entering a formal agreement, called a patient enrolment model, in which patients commit to seeking treatment from their enrolling provider, who, in turn, agrees to provide comprehensive PC services to each of their enrolled patients [ 52 ]. In Ontario, 84% of attached patients are part of a patient enrolment model, and 11% are considered attached due to repeated visits to a primary care provider with > 10% continuity of care- a threshold that helps to distinguish providers working in walk-in clinics from other PC providers [ 45 , 48 ]. Children who visit the same pediatrician repeatedly and patients who have received primary care from a community health centre are also considered attached [ 45 , 48 ]. Patients not meeting one of the above four criteria are considered ‘uncertainly attached’ [ 45 , 48 ]. ‘Uncertainly attached’ patients are those who only seek care by visiting an emergency department (e.g., following an accident), classed as ‘healthy non-users’, or those who receive primary care from an inconsistent source (e.g., from multiple PC providers)[ 45 , 48 ]. Recognizing the importance of patient partnership in achieving the Quintuple Aim, Patient Expertise in Research Collaboration (PERC), a patient-oriented research centre within INSPIRE-PHC, was established to enable authentic partnerships with patient and public partners [ 53 ]. It aims to promote and support meaningful and appropriate engagement of patients in primary health care (PHC) research in Ontario and beyond. PERC is funded by OSSU (Ontario SPOR Support Unit), one of eleven Canadian Support Units that support Canada’s Strategy for Patient Oriented Research (SPOR), which is led by the Canadian Institutes of Health Research[ 54 , 55 ]. In alignment with SPOR, PERC engages researchers, people with lived experience, and health system representatives in active partnerships to improve health outcomes and enhance health service delivery [ 56 ]. It has an Advisory Board composed of primary care patients with personal experience living with chronic illness or life-limiting conditions, family and friend caregivers, and researchers. PERC meaningfully engages Advisory Board members as strategic partners in research across all stages of the research process and patient-oriented research capacity development activities [ 55 , 56 ]. PERC Advisors are diverse in age, gender, ethnicity, and geography (from urban, rural, and suburban areas in Ontario, Canada). Study Purpose This project aimed to create visualizations of PC data by engaging PC patients/caregivers, providers, and local health system representatives. It was funded through a provincial Applied Health Research Question (AHRQ) granting stream designed to provide research evidence to support health system decision-making by linking provincially funded health researchers with representatives from health organizations [ 57 ]. In AHRQ-funded research, health system representatives identify a priority topic or question that would benefit from research evidence, and how the findings will inform planning, service delivery, policies, or programs [ 57 ]. Herein, the Greater Hamilton Health Network (GHHN) worked with PERC’s leads and Advisory Board to propose a project about patient partnership and primary care data infographic creation within this OHT to inform regional planning. The GHHN is responsible for integrating the care of approximately 600,000 people. Its strategic plan explicitly prioritizes addressing health inequities amongst this population and emphasizes providing equitable and continuous care that actively improves population health and meets the individual needs of its community [ 58 ]. Importantly, primary care engagement is one of their strategic plan's five core priorities, and patient/community engagement is one of its three overarching guiding principles [ 58 ]. At the time the project was initiated, the GHHN was aware of the release of PCDRs and wanted to understand how to use these data to support the delivery of integrated PHC to their attributed population. They were also interested in how PCDRs could help them communicate with the public about their decision-making processes, and how working in partnership with patients to ensure these conversations were centred around the needs of patients and families. PERC researchers partnered with the GHHN to facilitate understanding: i) what elements of primary care data were most important to patients and the public, ii) how patients and OHTs can co-produce visualizations of primary care data using patient-identified priorities, iii) how visuals can inform the work of OHTs, and iv) how the visuals can be shared with the public. The GHHN felt that project outputs could support communication with the public about the accessibility of PC within their OHT and provincially. They also wanted to contribute to a broader, national conversation about the PC system. Presenting understandable information to the public about attachment to primary care would raise awareness about the health human resources crisis in PC, and could support initiatives to improve its accessibility in Canada. Methods Working in partnership with the GHHN as knowledge users, PERC and its Advisory Board engaged primary care patients/caregivers, providers, OHT representatives, and a graphic designer in virtual meetings to create lay-friendly visualizations of local/provincial primary care data [ 59 ]. This project combined aspects of participatory design with evidence-based guidance for developing public health infographics. Participatory design is a method that empowers end-users to make design decisions and includes three stages: initial exploration of work; discovery processes; and prototyping [ 9 , 59 ]. Stones and Gent [ 59 ] outline seven principles of public health infographic design were used to ensure audience, color, alignment, prioritization, highlighting, imagery, and charts were considered. Our approach to engagement was best aligned with Transformative Action Research, where the researcher becomes a facilitator, taking direction from community members to plan research projects, generate questions, gather and analyze data, and return data to the community for reflection and action [ 60 , 61 ]. Transformative Action Research’s emphasis on doing research with (as opposed to for) community members aligned well with PERC’s and the GHHN’s approaches to engagement [ 62 ]. A series of meetings with patient/caregiver advisors, OHT representatives, trainees and researchers were held to provide orientation to PCDRs, share early findings about primary care locally and provincially, facilitate small-group infographic design discussions, and iteratively refine prototypes (Fig. 1 ). These meetings were informed by a co-developed engagement and dissemination strategy with patient partners that specified how i) this project was prepared for and focused, ii) data was collected and analyzed, and iii) results (including this manuscript) were constructed and disseminated (Table 2 ). In meeting one, INSPIRE-PHC representatives gave a presentation on PCDRs and discussed related opportunities with PERC’s Advisory Board. Advisors were interested in the information in PCDRs and noted how this information could both bring public attention to the shortage of family doctors and support efforts to increase provider supply. They also noted the complexity of synthesizing information from the PCDR spreadsheets and felt significant expertise was needed to make sense of the reports. They identified an opportunity for PERC to support the translation of PCDR findings for the public. Following meeting one, a successful AHRQ grant with PERC patient advisors as co-applicants was developed. GHHN patient advisors were subsequently invited to become involved. The lead author met with each of the five GHHN advisors interested in the project to provide an orientation to PERC and the project and understand their preferences for being engaged (e.g., communication, honoraria, any required supports) [ 63 ]. Meeting agendas with specific discussion questions were shared a few days before meetings. Summary notes were recorded by a PERC project coordinator and shared with project partners after sessions to ensure an accurate reflection of the conversation. Those unable to attend a meeting were encouraged to share feedback on draft infographics for incorporation into meeting notes. PERC researchers analyzed these notes to identify aspects of the visuals to revise and communicate them to a graphic designer. Analyzing meeting notes served as a form of process tracing, an evaluation method that has been used to identify the impacts of involving patients and the public in research [ 64 , 65 ]. All patient partners were provided with honorariums to acknowledge their lived expertise ( $ 25 per hour for time spent preparing for and contributing to meeting discussions and document review) and, given their significant contributions across all stages of this project, were invited to be co-authors of the infographics and this manuscript [ 66 ]. This research project was approved by the Hamilton Integrated Research Ethics Board at McMaster University in Ontario, Canada under Project #13199. Figure 1 Caption: Eight text boxes appear horizontally across the page with an arrow pointing to the right between each box. Each box indicates the meeting number, the date, and the topic discussed. Table 2 Our Process: Transformative Action Research 1. Planning and Preparation Identify members of the team Meeting 1: INSPIRE-PHC representatives gave overview of PCDR at PERC Advisory Board Meeting, discussed opportunities for knowledge translation. Partnered with knowledge user partners (GHHN) to complete AHRQ application. GHHN leads suggest consulting PC clinicians (via a GHHN Advisory Group) in project scoping. Secured graphic design support. Outline a conceptual framework using participatory principles Laying out the research plan (e.g., refining aims and processes of project plan with PERC patient advisors, providing additional orientation to PCDR project, understanding advisors’ interest/availability for project. Define parameters for the process PERC research staff met individually with 5 GHHN patient partners to provide orientation, understand engagement preferences. Meeting 2 topics: similarities between GHHN and PERC engagement approaches, timelines, deliverables. Negotiate the purpose, objectives of the project, and transformative action approach Meeting 2 topics: each partner’s connection to the topic, GHHN primary care priorities/how PCDR could support them Assess enabling and inhibiting factors Meeting 2 topics: background, context, limitations of PCDR, defining terms. 2. Generating questions Collectively identify focus of project Meeting 3 topics: PERC researchers present/discuss project, aims, sharing preliminary findings (GHHN/ON comparison) with PC clinicians from GHHN Advisory Group. Meeting 4 topic: discuss audience(s) for visuals and how to frame messages for audience(s). 3. Data gathering, and analysis Provide feedback on the quality of data gathered Analyze data collectively Meeting 4 topics: discuss first draft of visual (comparing GHHN and ON attachment data) Meeting 5 topics: discuss second draft of visual (GHHN/ON comparison with additional background information/definitions) Meeting 6 topics: discuss third draft of visual (1 background infographic, 1 to share PCDR results) 4. Returning data to community, reflection, and action Return data to communities for: interpretation, reflection, dissemination, and decision making Meeting 5, 6 topics: determine aesthetics and design features, co-create key messages, and dissemination strategies Meeting 7 topics: future of publicly available PC attachment data, limitations of working with administrative data (e.g., can quickly become out of date) Meeting 8 topics: developing plan for co-authored peer-reviewed manuscript Results Up to 14 patient/caregiver partners, four researchers, one GHHN staff and two primary care trainees were involved in six 90-minute meetings, conducted virtually between January 2022 and February 2024. Two other GHHN staff were unavailable to attend meetings but reviewed and provided feedback on iterations of the infographics by email. All nine patient/caregiver advisors from PERC and five (of the sixteen invited) patient/caregiver partners from the GHHN chose to be research partners on this project. On average, 9 of 14 patient/caregiver advisors attended per meeting. None of the six meetings were attended by fewer than 7 patient/caregiver partners. Two Ontario-based primary health care Graduate Student Trainees were also involved in all project activities as part of PERC’s yearly Patient Engagement Training Fellowship, which supports trainees via presentation opportunities and advice from PERC Advisors on incorporating patient perspectives into their graduate research. The results are described chronologically (see Fig. 1 for the Engagement Timeline). Table 3 summarizes strategic input received from PC clinicians and Table 4 describes patient/project partner feedback as it relates to principles of infographic design. Table 3 Feedback received from clinicians and decisionmakers Clinician & decision-maker perspectives • Emphasized that good quality primary care data to guide local decision-making is valued and welcomed. • Expressed interest in support to better understand PCDR data. Having PERC’s support to examine the data in greater detail was a value-add to the project. • Advised against losing sight of the goal of ‘Attachment for all’ by focusing too narrowly on those with PHC needs but not access. • Discussed the consideration of using PCDR data as a public-facing measure of attachment and expressed caution that PHC access may worsen before it improves. • Identified the role that PCDR data could play in guiding public-facing, educational and/or awareness-raising campaigns about PHC locally and generating public interest in advocacy. • Acknowledged the value of patient advisor perspectives on attachment issues (e.g., people who are racialized or those living with low incomes disproportionately experience uncertain attachment, even exclusion from the PHC system). Table 4 Feedback received from patient, project partners Principles of Infographic Design (G.R.A.P.H.I.C. [49]) G - Get to know your Audience • Acknowledge and be open about data limitations in the PCDR (e.g., health equity data). • Define words/concepts (e.g., attachment, continuity), reduce technical words, and aim for a grade 8 reading level. • Use consistent language (e.g., “inconsistent PC provider” vs. “uncertainly attached”). • Use “mental health issues”, instead of “illness”. • Consider where the infographic will be shared when creating it. • Create an accessible, engaging, and educational infographic for the public. • Raise awareness and encourage engagement among the public. • Prioritize the needs/interests of the public when choosing which data to include. Use bullet points, not full sentences. • Create two shorter documents (vs. one long document) to make the content more digestible. • Clarify that PC providers can be team-based and use broader language when referring to them (e.g., use “healthcare providers” vs. “doctor”). • Include resources for finding PC providers. • Consider accessibility for folks without phones or internet access. • Consider multiple delivery formats (e.g., video, bookmarks, flyers, shorter versions of the infographics). • Use brochure format for printed materials (e.g., paper folded in three). • Add a QR code to link to INSPIRE-PHC and PCDR R- Restrict Colour • Keep the GHHN colour scheme, as it is welcoming, and non-abrasive. • Ensure the content “pops” when printed in grayscale. A- Align Elements • Increase font size/decrease margin size for accessibility. • Create white space at the bottom of the page. P- Prioritise Parts • Prioritize definitions and background over visuals comparing attachment rates. • Highlight the benefits, risks, and importance of PC/attachment, without implying blame on those without PC providers. • Frame the concept of attachment as “value-added” (e.g., attached patients have lower costs). • Highlight actions the public (including ‘uncertainly attached’ patients) can take. • Condense, or move the data about attachment types to the end of the draft. H- Highlight the Heading • Consider using a question format for the title and subtitles to engage the audience. • Consider changing “Understanding primary care in Ontario” to “Who is my first point of contact with the healthcare system?” I- Invest in Imagery (wisely) • Include visual representations of the content/definitions. • “Humanize” the infographic with patient-provider images. • Add a graphic to indicate the GHHN’s location. • Remove binary gender icon. • Differentiate hyperlinks with colour or font size. C- Choose Charts Carefully • Add definitions for some of the variables in the chart Table 5 Guidance for Reporting Involvement of Patients and the Public (GRIPP2) Long Form Table Section and topic Item Reported on page No Section 1: Abstract of paper 1a: Aim Report the aim of the study 3 1b: Methods Describe the methods used by which patients and the public were involved 3 1c: Results Report the impacts and outcomes of PPI in the study 3 1d:Conclusions Summarise the main conclusions of the study 3 1e: Keywords Include PPI, “patient and public involvement,” or alternative terms as keywords 4 Section 2: Background to paper 2a: Definition Report the definition of PPI used in the study and how it links to comparable studies 10 2b: Theoretical underpinnings Report the theoretical rationale and any theoretical influences relating to PPI in the study 4,5, 7–10 2c: Concepts and theory development Report any conceptual or theoretical models, or influences, used in the study 4–5, 12–14 Section 3: Aims of paper 3: Aim Report the aim of the study 11 Section 4: Methods of paper 4a: Design Provide a clear description of methods by which patients and the public were involved 12–14 4b: People involved Provide a description of patients, carers, and the public involved with the PPI activity in the study 12–14 4c: Stages of involvement Report on how PPI is used at different stages of the study 15–16 4d: Level or nature of involvement Report the level or nature of PPI used at various stages of the study 15–16 Section 5: Capture or measurement of PPI impact 5a: Qualitative evidence of impact If applicable, report the methods used to qualitatively explore the impact of PPI in the study 14 5b: Quantitative evidence of impact If applicable, report the methods used to quantitatively measure or assess the impact of PPI N/R 5c: Robustness of measure If applicable, report the rigour of the method used to capture or measure the impact of PPI N/R Section 6: Economic assessment 6: Economic assessment If applicable, report the method used for an economic assessment of PPI N/R Section 7: Study results 7a: Outcomes of PPI Report the results of PPI in the study, including both positive and negative outcomes 16–24 7b: Impacts of PPI Report the positive and negative impacts that PPI has had on the research, the individuals involved (including patients and researchers), and wider impacts 16–24 7c: Context of PPI Report the influence of any contextual factors that enabled or hindered the process or impact of PPI 16–24 7d: Process of PPI Report the influence of any process factors, that enabled or hindered the impact of PPI 16–24 7ei: Theory development Report any conceptual or theoretical development in PPI that have emerged N/R 7eii: Theory development Report evaluation of theoretical models, if any N/R 7f: Measurement If applicable, report all aspects of instrument development and testing (eg, validity, reliability, feasibility, acceptability, responsiveness, interpretability, appropriateness, precision) N/R 7 g: Economic assessment Report any information on the costs or benefit of PPI N/R Section 8: Discussion & Conclusion 8a: Outcomes Comment on how PPI influenced the study overall. Describe positive and negative effects 25–28 8b: Impacts Comment on the different impacts of PPI identified in this study and how they contribute to new knowledge 25–28 8c: Definition Comment on the definition of PPI used (reported in the Background section) and whether or not you would suggest any changes N/R 8d: Theoretical underpinnings Comment on any way your study adds to the theoretical development of PPI N/R 8e: Context Comment on how context factors influenced PPI in the study 28 8f: Process Comment on how process factors influenced PPI in the study 29 8 g: Measurement and capture of PPI impact If applicable, comment on how well PPI impact was evaluated or measured in the study N/R 8 h: Economic assessment If applicable, discuss any aspects of the economic cost or benefit of PPI, particularly any suggestions for future economic modelling. N/R 8i: Reflections/critical perspective Comment critically on the study, reflecting on the things that went well and those that did not, so that others can learn from this study 30 N/R = not reported PERC and GHHN partners met for the first time in Meeting 2. A Project Summary and Meeting Agenda were shared a few days before the session. Attendees described their connection to and interest in the project during introductions. PERC researchers outlined how PERC and GHHN approaches mutually emphasized clear communication and the importance of inclusive, diverse perspectives in engagement. They also gave an overview of PCDRs. The discussion that followed touched on populations that are not represented in PCDR (e.g., residents of long-term care homes, Indigenous peoples living on a reserve). Some patient partners asked how the idea of ‘attachment’ to primary care was defined, who was involved, and if patient partners contributed. Others shared their perception of what ‘being attached’ to primary care meant, and, in contrast with the PCDR definition, emphasized the importance of relationship quality, availability of their provider and continuity with the same provider. Hearing from partners that ‘attachment’ may not be an intuitive term, and how preconceptions related to the idea of attachment were not addressed by PCDR data (e.g., provider relationship quality), were critical in learning the needs of our audience. The discussion also confirmed the importance of transparency regarding data limitations, especially regarding populations that may experience difficulties accessing PC services. In Meeting 3, GHHN staff invited PERC researchers to give a presentation on PCDR to a working group of PC clinicians. The presentation included an overview of the data source, and PCDR results comparing GHHN with the province. Variables where the region differed significantly (5–10% or more) from provincial-level rates were highlighted. Given that ‘uncertainly attached’ patients who only receive care by visiting an Emergency Department, are often referred to as ‘healthy non-users’, the presentation containing [ 48 ] our analyses excluded this group (65% of ‘uncertainly attached’ patients). We instead focused on the 35% of ‘uncertainly attached’ patients who demonstrated need, but were not able to access a consistent primary care provider[ 48 ]. After the presentation, clinicians responded to this choice, noting that the goal should be to attach every patient, not just those with acute PC needs. The clinicians noted the role that PC plays in preventing disease among those who are well, implying healthy non-users of PC may miss out on this upstream, preventative care. The clinicians were excited by the promise of high-quality PC data to support local decision-making and were interested in having additional support to analyze PCDRs. This group envisioned PCDR data supporting a public conversation about attachment and building awareness about the importance of primary care. Table 3 lists additional feedback we received from this group. A draft infographic highlighting differences between ‘attached’ and ‘uncertainly-attached’ patients was developed with a graphic designer between Meetings 3 and 4. Outcomes relating to health equity were highlighted and, as in Meeting 3, metrics where a significant difference (≥ 5–10%) between attached patients and those who demonstrate need, but not access to a consistent PC provider, were prioritized. The first draft also differentiated between these groups at the local and provincial levels. The metrics demonstrating significant difference were age, sex, morbidity, and mental illness. In Meeting 4, virtual break-out group discussions were held with project partners (7 patient partners, 1 GHHN staff, 2 trainees, 3 PERC researchers). Discussions indicated that we needed clear and consistent explanations of the following terms: uncertain attachment, morbidity, chronic conditions, and PC provider. PERC researchers explained how billing code data and PCDR definitions of topics like sex (e.g., not gender) and mental health (e.g., explicit diagnoses versus more transient mental health issues) differed from how patient advisors told us they considered these terms. This emerged as a sort of tension between how billing codes simplify experiences that were more nuanced to patients. The group indicated that the definitions of these concepts should occur before presenting PCDR results as they are prerequisites to understanding the findings. Patient- and project partners asked that we prioritize the implications of not being attached, emphasizing how ongoing access to PC contributes to maintaining one’s health. Patient- and project partners also suggested that actions for ‘uncertainly attached’ patients to take to become attached be included in the infographic. During this session, it was recommended that images be used to support understanding of the terms to be added and that images of people or providers could ‘humanize’ the data. The group suggested a question-style title (e.g., ‘Am I attached?’) could draw interest better than a generic title about PCDR data locally and regionally. In Meeting 4, questions to better define the audience were asked to determine whether there was a specific segment of the public that the infographics should aim to reach. Comments from the group indicated that an appealing visual for the public would also be understandable and educational for providers. In response to the request for additional detail and definitions of concepts, the second draft was twice as long as the first. Patient/project partners felt splitting the material into two shorter (2-page) documents might be better than one 4-page visual. Many group members also stated that the text was now quite complex and needed to be simplified to a Grade 8 reading level to make the content digestible by the public. Patient partners also noted that patients without internet access could not use the website resources included in this iteration to support finding a PC provider. It was recommended that phone numbers for these resources be added. Project partners emphasized that messaging be neutral and avoid any sense of blame on individual patients for not having a PC provider. They also identified that text explaining what Physician Billing Codes could be removed. The group approved the colour scheme (light and dark blue) as it integrated PERC and GHHN logos and branding well. Between Meetings 4 and 5, PERC researchers conveyed feedback on the first draft to the graphic designer and requested revisions. The graphic designer had experience iteratively incorporating feedback from patient research partners into their designs. A second draft was developed and shared, with a meeting agenda containing questions about the second draft circulated. To emphasize the importance of attachment, metrics about income, newcomers, minorities, and housing instability were added, to demonstrate how these characteristics differed between attached and patients with need, but not access to primary care. Between Meetings 5 and 6, PERC researchers shared comments from the meeting with the graphic designer for revision. A communications advisor from the university was consulted to reduce the complexity of the text to a Grade 8 Reading Level; text on previous iterations had been higher than a grade 13 level. A third draft was shared with the group. Meeting 6’s discussion centred around finding an engaging heading/title that spoke to the public, even those, such as newcomers who may not be familiar with the term ‘primary care provider’ or know the role that primary care plays in maintaining health (e.g., including prescribing medications and referring patients to specialist services). It was suggested that the term ‘doctor’ would be universally understood, a comment that was balanced by other comments noting how it may not be helpful for the infographic to promote the idea that physicians are the sole primary care providers, given the important roles played by other disciplines in providing team-based PC. The group discussed the dissemination strategy for the completed visuals, and project partners were invited to co-author conference presentations. Between Meetings 6 and 7, PERC researchers worked with the graphic designer to integrate suggested edits. A final draft was presented to project partners by email. Project partners were invited to provide additional feedback on this draft by email or telephone with PERC researchers. These recommendations were subsequently integrated into the final draft (Figs. 2–5). The final draft was presented to, and discussed with, the primary care clinicians that attended Meeting 3. This discussion centred around the implications of a second iteration of PCDR data (2020–2022) that would include changes seen in PC during the COVID-19 pandemic. In Meeting 8, project partners came together to discuss an early draft of this manuscript and their interest in co-authorship. As part of our process tracing approach, and as aligned with best practice for reporting details about patient engagement [ 67 ], we asked project partners to describe their experience working on the project. We sought their perceptions about what the aim of engagement was, how they felt they impacted the process and outcomes of engagement in this work, and any insights or lessons learned that they felt would be worthwhile to share in this paper. Engagement process Meeting notes from this session indicated that patient advisors saw the aim of engagement being to ensure conversations about PC attachment included those with lived experience, in addition to expertise from policy, research and practice. The advisors felt that the engagement approach was inclusive, which was exemplified by the partners feeling comfortable enough to share their personal experiences of attachment during the discussions. The patient advisors described the value associated with having been involved early in the process and throughout the project. They felt that their lived experiences as patients and caregivers ‘brought life to stats’, enhanced the final product, and helped to ‘put the word out’ about a resource that they hope will be helpful to others. The group described the engagement process as iterative, where their suggestions were heard and integrated into subsequent infographic drafts. One advisor noted that the project was successful because people were asked “How can we make things better” and their suggestions were heard and implemented. Another identified how the team approach to engagement led to interesting results. When asked how their contributions impacted the infographics, advisors said their emphasis on equity and diversity, along with their suggestions about simplifying language and adding definitions made the infographics more inclusive, so that anyone would be able to understand the final product. They felt that a project to share PC data with the public ‘should not be done in a vacuum’ and that including patient partners helped researchers better understand how attachment to a PC provider (or lack thereof) impacted the health and well-being of patients. The partners reviewed and approved the final versions of the infographics and supported their dissemination. Partners also provided valuable suggestions regarding an earlier draft of this manuscript. They recommended more context in the background section, and the inclusion of quotes to describe their comments during Meeting 8. At the end of the study, project partners also described how their involvement with this project impacted them. A partner working in the health system said the project offered valuable learning about how to communicate with the public about primary care. A patient advisor said the topic of attachment resonated with them, that it was valuable to engage in research that felt relevant, and validating to know that their ‘experience is valid to the big picture’. Another patient advisor noted that their positive experience being engaged in this project motivated them to return to Meeting 8 (11 months later) and contribute to developing this manuscript. * Insert Figs. 2–5 here * Figures 2,3: Infographic 1: Who is my first point of contact with the healthcare system Figures 4,5: Infographic 2: People with family doctors in the Greater Hamilton Health Network and Ontario Discussion Findings summary A partnership between patient advisors, regional health system representatives, researchers, and trainees was established to co-produce public-facing visualizations of primary care data. Using a transformative action research approach, we worked together to decide who would be involved, how we would work together, and what the aims, timelines and constraints of the project would be. Over six meetings, project partners shared feedback on draft infographics, audience delineation (including how they conceived of health care and primary care), priority element identification from a primary care data resource, and advising on aesthetic features (e.g., headings, colour scheme and charts). Advice from project partners led to two 2-page infographics aimed at the public being created. The first defined relevant terms and promoted a shared understanding of the roles and impacts of primary care. The second infographic presented priority metrics (age, sex, income, new-to-Ontario, visible minority, housing instability and mental health diagnosis) from a PCDR, comparing the population-level data for the GHHN and Ontario. The group co-designed the colour scheme, brainstormed multiple headings and emphasized the importance of imagery in the infographics. Implications of findings This research responds to calls in the literature for increased patient engagement in knowledge translation and research using administrative data [ 68 , 69 ]. Previous authors have described the utility of using infographics and videos to increase health literacy and promote self-management for individuals [ 7 – 9 ]. To our knowledge, this is the first example of working with patient advisors to co-create a visual depiction of population-level data on attachment to primary care. Our process to engage patients and visualize data corresponds with a recent review outlining strategies to enhance public health data literacy for the general population, and especially equity-deserving groups, in Canada [ 70 ]. Previous authors have identified the importance of visuals in enhancing understanding of health-related topics. By reducing the mental load of interpreting information, visuals help people process complex information faster [ 9 , 71 ]. However, infographics developed without input from their intended audience can contain details which distract from the main point, or become so oversimplified that they either lose meaning or become detached from patients’ lived experience [ 7 , 9 ]. Throughout this project, patients told us both when we had too much detail, linguistic complexity, or jargon, and where more detail was needed. Each engagement opportunity offered tangible improvements in infographic readability through our partnership with patients and health system representatives. Notably, we were not consistently complex or simplistic; at times, we missed the mark in both directions. This project aligns with previous authors' identification of the importance of patient engagement in primary care to ensure that patients are supported in both individual-level care decisions and in system-level planning of PC services [ 9 , 72 – 74 ]. Patient engagement, and policy directions anchored in public values, needs and preferences, are structural features characteristic of a high-performing PC system. Recent work, however, suggests that patient engagement is an undeveloped component of most Canadian PC reforms between 2012 and 2021, and requires significant improvement [ 18 ]. How we developed public-facing infographics translating data about primary care provides an example of how to meet this call for improvement. This project also responds to calls for using PC data to make policy decisions (as we helped the GHHN use PCDR data to address a local need), while explicitly assisting local decision-makers (supported by OHT-affiliated patient advisors) in public communication. This project occurred as Ontario is moving towards operating as a Learning Health System (LHS) [ 51 ]. A Learning Health System ‘brings together information from practice and research and feeds it back to teams in ways that are meaningful and useable to them. This in turn leads to practice change that improves care.’ [ 75 ]. A LHS utilizes an iterative process and blurs the distinctions between research, care delivery, and quality improvement to accelerate the ongoing incorporation of feedback and uptake of evidence [ 51 ]. In LHSs, patient engagement is crucial to identify areas where health system change, or learning should occur [ 51 , 76 ]. In Ontario, provincial supports (resources, access to expertise) exist to promote LHS principles among OHTs. Though LHS frameworks position patients and caregivers as drivers of health system change [ 51 ], patients report difficulties knowing how they fit into a LHS, or what roles they can play to contribute [ 77 ]. Relatedly, a recent review of 81 articles about LHS highlighted the absence of patient engagement in the LHS literature and called for future work in this area [ 76 ]. The results of Arcia and colleagues [ 9 ], which parallel ours, indicated that their work to co-develop infographics of patient health information aligned with the original vision for LHS, as articulated by the Institute of Medicine, which indicates that patients should be involved in developing data processes for their health information [ 74 ]. The results from this project confirm that patients can make important contributions to learning within health systems in both knowledge translation (e.g., the infographics developed) and by developing new knowledge (e.g., the learnings about co-producing infographics documented herein). This project, as such, offers a tangible example of how patients can contribute to a LHS. To this end, we recommend other OHTs engage their patient advisors in interpreting PCDR data, to identify areas where health system learning or change is warranted. Ontario has recently announced funding in support of team-based approaches to PHC congruent with LHS principles [ 78 ]. Two examples highlight how this could occur. In Ontario, The Alliance for Healthier Communities has articulated a vision for the province’s Community Health Centres to act as learning health systems, using electronic health record data to guide this process [ 75 ]. Additionally, the POPLAR provincial practice-based learning and research network (which includes data from Community Health Centres and other PC models) has integrated patient advice into their development [ 79 ]. Using new funding to embed patient partners within new team-based structures presents would ensure their expertise is included systematically, and act in the spirit of Learning Health System principles. Overlap already exists between LHS principles and the OHT Building Blocks, regarding using data to support ongoing improvements to healthcare quality, patient experience, and evaluation (Building Blocks 5 and 8). Aligning these provincial health system reform efforts (LHS and OHTs) with new PC structures could help to address a gap in LHS theory and practice, and ensure that health systems ‘learn’ in ways that are important to patients and caregivers. Engagement Context The topic of access to primary care generated mainstream media attention in Ontario as this study was conducted. Many newspaper articles, radio shows, advocacy campaigns and media interviews referenced PCDR data [ 80 – 83 ]. Partner’s notable feelings of connection to this topic (as described in Meeting 8), and sense of the relevance of their involvement, occurred in this context. This concurs with the existing literature’s identification of improving the health system and self-fulfillment as two of the most common reasons patients become partners in health services research [ 84 , 85 ]. McCarron and colleagues [ 85 ] define self-fulfilment as including four components: helping others, the overall gratification received from the opportunity, meaningful connections, and a sense of purpose. These authors defined the desire to improve the health system as including both a desire to improve the culture of care, and to speak for those who cannot speak for themselves [ 85 ]. In Meeting 8, when project partners were asked about their involvement with this project, they described their experience as meaningful and validating and felt that the output could help others. Partners’ positive perceptions of their work on this project may be explained by the project’s alignment with their original motivation to become patient partners. This is consistent with findings from a recent study in Ontario that interviewed patient advisors about their experiences and motivation for becoming involved with OHTs, which emphasized self-fulfillment [ 39 ]. We therefore encourage other health system researchers to engage patients as partners on projects addressing primary care access. Doing so is ideally suited to benefitting both the patient partners and the healthcare system more generally. Engagement Process Utilizing a transformative action research approach to engaging patient and health system advisors [ 60 , 61 ] informed by best practice recommendations for infographic creation in public health [ 86 ] allowed this project to unfold efficiently and rapidly. Spending time during Meeting 2 to highlight the alignment between documented engagement practices for the GHNN [ 62 ] and PERC could have increased buy-in among project partners and contributed to the sense of a unified approach identified by partners in Meeting 8. Though there is a legislated mandate for OHTs like the GHNN to engage patients and communities in their development [ 39 , 40 ], authors have commented on how engagement mandates can increase token forms of engagement [ 87 ] and result in a difference between the ritual of participation and the genuine power required to have an impact [ 88 ]. Previous authors have outlined how participatory forms of health research can achieve impact by breaking down ‘hierarchies of knowledge’ where power is retained by researchers who control access to data, through partnerships where power is shared [ 89 , 90 ]. The horizontality present between PERC and GHNN representatives throughout this process presents as a demonstration of non-hierarchical collaboration in practice. This study also presents as a demonstration of genuine engagement, using the continuum from genuine to token engagement practices articulated in 2015 by members of a Clinician-Community Advisory Group of the North American Primary Care Research Group [ 88 ]. In contrast to scholarship that ‘hides data from patients’, this study explicitly increased the transparency of publicly available primary care data. It presents a blueprint for how data can be communicated to and with patients, levelling hierarchies between patients, researchers and health system decision-makers. Limitations While this project benefitted from its orientation to transformative action research principles, there are aspects of this participatory methodology we did not implement. We did not facilitate workshops in communities to share results and increase community ownership of the data. We also recognize that best practices in evaluating patient and public involvement in research include an economic assessment of engagement processes and impacts; doing so, however, was unfortunately outside the scope of this 1-year grant. Conclusion Patient engagement in research is becoming widespread, but co-developing knowledge products with patient and health system partners is less common. Co-developed infographics can prevent oversimplification and unnecessary complexity and ensure that visuals are understandable by the target population(s). Health services research benefits from the diversity of perspectives possible when knowledge users, researchers, and most importantly patient and community advisors are brought together. Addressing current health system challenges will require this diversity of input if the Quintuple Aim is to be met. Abbreviations AHRQ- Applied Health Research Question EHR- Electronic Health Record GHHN- The Greater Hamilton Health Network GRIPP2- Guidance for Reporting Involvement of Patients and the Public INSPIRE-PHC- Innovations Strengthening Primary Health Care Through Research LHS- Learning Health System OHT- Ontario Health Team ON- Ontario OSSU- Ontario SPOR (Strategy for Patient-Oriented Research) Support Unit PCDR- Primary Care Data Reports PERC- Patient Expertise in Research Collaboration PC- Primary Care PHC- Primary Health Care PPI- Patient and Public Involvement SPOR- Strategy for Patient-Oriented Research Declarations Ethical Approval and Consent to participate: This research project was approved by the Hamilton Integrated Research Ethics Board at McMaster University in Ontario, Canada under Project #13199. Consent for publication: The authors affirm all that project partners consented to the publication of data collected during this project. Availability of data and materials : The data that support the findings of this study are available from the Ontario Community Health Profiles partnership with the identifier: https://www.ontariohealthprofiles.ca/ontarioHealthTeam.php. Competing interests: The authors have no relevant financial or non-financial interests to disclose. Funding: This study received funding from the Ontario Ministry of Health through an Innovations Strengthening Primary Health Care Through Research (INSPIRE-PHC) Applied Health Research Question grant awarded to Drs MacNeil and Ganann. This study was supported by funding from Canadian Institutes of Health Research and the Ontario SPOR SUPPORT Unit awarded to Dr Ganann. The funders had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication. Disclaimer: The analyses, conclusions, opinions, and statements expressed herein are solely those of the authors and do not reflect those of the funding or data sources; no endorsement is intended or should be inferred. Authors' contributions: Conceptualization: MMa, RGa, VR, JBa, JBo, CC, EF, MH, CL, MMc & SP. Methodology: MMa, AT, RGa, VR, JBa, JBo, CC, CL, AG, MH, MJ, MMc, SP, PS, JS, JV, MW, & SW. Software, validation, formal analysis, resources, data curation: EF, MG & RGl. Writing- original draft: MMa, AT & RGa. All authors contributed to visualization of the data and reviewed the manuscript. Acknowledgements: We would like to thank patient partners Angela Frisina and Bernice King for their contributions to the design of this project and for visualizing and interpreting project results. We thank Hilary Nolan Haupt and Michelle Sharp for their project administration and graphic design support. 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Banner, D., et al., Patient and public engagement in integrated knowledge translation research: are we there yet? Res Involv Engagem, 2019. 5 (1). Teodorowski, P., et al., "To me, it's ones and zeros, but in reality that one is death": a qualitative study exploring researchers' experience of involving and engaging seldom‐heard communities in big data research. Health Expect, 2023. 26 (2): p. 882-891. Bhuiya AR, J.A., Grewal E, Dass R, Wilson MG, Rapid evidence profile #70: strategies for enhancing public-health-focused data literacy . 2024: Hamilton, Ontario. p. 1-5. Spicer, J.O. and C.G. Coleman, Creating effective infographics and visual abstracts to disseminate research and facilitate medical education on social media. Clin Infect Dis, 2022. 74 (Suppl_3): p. e14-e22. Aggarwal, M. and B. Hutchison, Toward a primary care strategy for Canada . 2012, Canadian Foundation for Healthcare Improvement. Sharma, A.E. and K. Grumbach, Engaging patients in primary care practice transformation: theory, evidence and practice. Fam Pract, 2016: p. cmw128. Committee on the Learning Health Care System in America and Institute of Medicine, Best care at lower cost: the path to continuously learning health care in America . 2013, Washington, DC: National Academies Press. Alliance for Healthier Communities, Towards a learning health system: better care tomorrow when we learn from today . 2019. Platt, J.E., M. Raj, and M. Wienroth, An analysis of the learning health system in its first decade in practice: scoping review. J Med Internet Res, 2020. 22 (3). Lee-Foon, N.K., et al., Positioning patients to partner: exploring ways to better integrate patient involvement in the learning health systems. Res Involv Engagem, 2023. 9 (1). Casey, L., Ontario to add 400 new primary care providers to deal with staffing shortage , in Canadian Press . 2024, CBC News: Toronto, Ontario Primary Care Ontario Practice-based Learning and Research Network [POPLAR]. POPLAR governance . n.d.; Available from: https://www.poplarnetwork.ca/governance. Grant, K. and Y. Sun, Uncovering the real numbers behind who in Ontario lacks access to a family doctor , in The Globe and Mail . 2023. Tunney, J., More than 2 million Ontarians now without a family doctor: report , in CBC News . 2023. Ontario College of Family Physicians. Media impact October-December 2023 . n.d.; Available from: https://ontariofamilyphysicians.ca/advocacy/media/. CBC Listen, The current with Matt Galloway , in Crisis in care: a public forum on primary care and the shortage of family doctors . 2023. Abelson, J., et al., Understanding patient partnership in health systems: lessons from the Canadian patient partner survey. BMJ Open, 2022. 12 (9). McCarron, T.L., et al., Understanding the motivations of patients: a co-designed project to understand the factors behind patient engagement. Health Expect, 2019. 22 . Stones, C. and M. Gent, 7 G.R.A.P.H.I.C principles of public health infographic design , P.H. England, Editor. 2015, University of Leeds: Leeds, UK. Kiran, T., J. Tepper, and F. Gavin, Working with patients to improve care , in CMAJ . 2020. p. E125-127. Hahn, D.L., et al., Tokenism in patient engagement. Fam Pract, 2017. 34 (3): p. 290-295. Wallerstein, N. and B. Duran, Community-based participatory research contributions to intervention research: the intersection of science and practice to improve health equity. Am J Public Health, 2010. 100 (S1): p. S40-6. Pratt, B., What should engagement in health research look like? Perspectives from people with lived experience, members of the public, and engagement managers. Camb Q Healthc Ethics, 2022. 31 (2): p. 263-274. Additional Declarations No competing interests reported. Cite Share Download PDF Status: Published Journal Publication published 04 Nov, 2024 Read the published version in Research Involvement and Engagement → Version 1 posted Editorial decision: Revision requested 26 Aug, 2024 Editor assigned by journal 26 Aug, 2024 Submission checks completed at journal 26 Aug, 2024 First submitted to journal 20 Aug, 2024 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-4946543","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":345109415,"identity":"c6bac785-719b-4b1e-8b05-412149b5fad6","order_by":0,"name":"Maggie MacNeil","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAA3klEQVRIiWNgGAWjYPACCTl+UrVYGEs2gBkGRGupSNxwgFgtuu2Hnz34mCNhbHzt8NMNP/78kTNvYH74AZ8WszNp5oYzt0nImd1OM7vZ22ZgLHOAzVgCr5YDOWzSvNskjM1u57Dd4G0wSJzBwMOAX8v5N2zSf7dJJG6encN2888fg3qgFuYfeLXcANrCCNSyQTqH7TYPm0GCBAMPG35bbjwzk+wFOkwC6Jfbsm3GhjOY2cws8Dss+ZnEz211cvyzk5/dfPNHTl6CvfnxDXxasABmEtWPglEwCkbBKMAEAMoJRk0UN0OVAAAAAElFTkSuQmCC","orcid":"","institution":"McMaster University","correspondingAuthor":true,"prefix":"","firstName":"Maggie","middleName":"","lastName":"MacNeil","suffix":""},{"id":345109416,"identity":"8a2be0fe-89e9-454a-bf4f-e00cdf7a3007","order_by":1,"name":"Aya Tagami","email":"","orcid":"","institution":"McMaster University","correspondingAuthor":false,"prefix":"","firstName":"Aya","middleName":"","lastName":"Tagami","suffix":""},{"id":345109417,"identity":"da64b41b-415c-430b-878e-395ffd9b4a47","order_by":2,"name":"Peter 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16:36:16","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-4946543/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-4946543/v1","draftVersion":[],"editorialEvents":[{"content":"https://doi.org/10.1186/s40900-024-00652-5","type":"published","date":"2024-11-04T15:57:23+00:00"}],"editorialNote":"","failedWorkflow":false,"files":[{"id":66791240,"identity":"ee1fdfaa-648d-4e5b-966f-51d0af39d9b6","added_by":"auto","created_at":"2024-10-16 13:38:36","extension":"jpg","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":174009,"visible":true,"origin":"","legend":"\u003cp\u003eEngagement Timeline Eight text boxes appear horizontally across the page with an arrow pointing to the right between each box. Each box indicates the meeting number, the date, and the topic discussed.\u003c/p\u003e","description":"","filename":"1.jpg","url":"https://assets-eu.researchsquare.com/files/rs-4946543/v1/83b91d9305b0f19aa80882cb.jpg"},{"id":66790185,"identity":"0bf5e922-c8e1-4e95-9702-ee5881e97f49","added_by":"auto","created_at":"2024-10-16 13:30:36","extension":"jpg","order_by":2,"title":"Figure 2","display":"","copyAsset":false,"role":"figure","size":591159,"visible":true,"origin":"","legend":"\u003cp\u003eFigures 2,3: Infographic 1: Who is my first point of contact with the healthcare system\u003c/p\u003e","description":"","filename":"Figure2.jpg","url":"https://assets-eu.researchsquare.com/files/rs-4946543/v1/622ab7ab52bbc441e937c8e6.jpg"},{"id":66790187,"identity":"a3fd49e8-8a5c-4b69-a377-ee785e0eaf2e","added_by":"auto","created_at":"2024-10-16 13:30:36","extension":"jpg","order_by":3,"title":"Figure 3","display":"","copyAsset":false,"role":"figure","size":583906,"visible":true,"origin":"","legend":"\u003cp\u003eFigures 2,3: Infographic 1: Who is my first point of contact with the healthcare system\u003c/p\u003e","description":"","filename":"Figure3.jpg","url":"https://assets-eu.researchsquare.com/files/rs-4946543/v1/853bc56763d96a049e90844c.jpg"},{"id":66792467,"identity":"cc7eee81-9604-425a-b30b-dcf18413df98","added_by":"auto","created_at":"2024-10-16 13:46:36","extension":"jpg","order_by":4,"title":"Figure 4","display":"","copyAsset":false,"role":"figure","size":634254,"visible":true,"origin":"","legend":"\u003cp\u003eFigures 4,5: Infographic 2: People with family doctors in the Greater Hamilton Health Network and Ontario\u003c/p\u003e","description":"","filename":"Figure4.jpg","url":"https://assets-eu.researchsquare.com/files/rs-4946543/v1/5705401265cba44370cc2b82.jpg"},{"id":66790189,"identity":"32c95492-4d58-47c4-98c8-291caa72ab0f","added_by":"auto","created_at":"2024-10-16 13:30:36","extension":"jpg","order_by":5,"title":"Figure 5","display":"","copyAsset":false,"role":"figure","size":577004,"visible":true,"origin":"","legend":"\u003cp\u003eFigures 4,5: Infographic 2: People with family doctors in the Greater Hamilton Health Network and Ontario\u003c/p\u003e","description":"","filename":"Figure5.jpg","url":"https://assets-eu.researchsquare.com/files/rs-4946543/v1/e2de08313987dc5dc0d991f0.jpg"},{"id":68749874,"identity":"1164c2ad-b39b-4f81-81f2-23fba265742a","added_by":"auto","created_at":"2024-11-11 16:07:07","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":3575158,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-4946543/v1/543ecc05-7f5c-4e55-a4b2-6ab0d26484d0.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":" Am I attached? A patient-partnered approach to creating infographics about attachment to primary care in Ontario, Canada","fulltext":[{"header":"Plain English Summary","content":"\u003cp\u003eHaving a primary care provider is associated with better healthcare experiences and lower costs of care. In 2021, the Primary Care Data Reports (PCDRs) were released to the public. They contain administrative data about how patients engage with primary care in each of the 58 Ontario Health Teams (OHTs). We created an infographic with patient advisors, OHT representatives, researchers, and trainees to share this data in a way that can be understood by everyone. Infographics use images to help people process information faster, which can make health-related topics easier to understand. By understanding the value of primary care, people can participate in conversations about how to ensure primary care is accessible to everyone.\u003c/p\u003e\n\u003cp\u003eEngaging patients is becoming common in research, but collaborating with patient advisors and health system partners to create visual summaries is less common. \u0026nbsp;We had six virtual meetings that were 90 minutes each with up to 14 patient advisors, OHT representatives, researchers and trainees. We also consulted with primary care clinicians. The patient advisors helped decide who our audience would be, which information from the PCDRs to include, and how the infographic would look. They told us it was most important to highlight the benefits patients can get from primary care, and the impact primary care can have to reduce health system costs. The primary care clinicians ensured the infographic reflected local priorities. Working with patient advisors and OHT representatives helped us create an infographic about PCDR data that can be easily understood by the public.\u0026nbsp;\u003c/p\u003e"},{"header":"Background","content":"\u003cp\u003eHealth research that engages patients as partners in research teams is an increasingly widespread practice. Partnering with people with lived expertise can bring value to health research, ensuring that research priorities, questions, and approaches are relevant and have the potential to improve patient outcomes [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e]. Patient partners are motivated to become involved in health research by their desire to improve health systems; many continue their involvement when they see the impact their contributions have made [\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e, \u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e]. They are most frequently engaged during knowledge mobilization, often supporting the uptake of research findings among diverse knowledge user audiences, including practice, policy, and importantly, the public [\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e, \u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eAs the foundation and entry point to health care in Canada, primary care (PC) can benefit from engaging patient and community partners in research. In Ontario, a province of 14\u0026nbsp;million people, primary care providers receive nearly one million visits per week, and two-thirds of all daily physician visits are to PC [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e][\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e]. This suggests that PC may be the sector of the health system where contributions from patient partners to health services research and health system decision making stand to have the greatest impact. Previous authors have shown the impact of patient partners in creating lay resources specific to PC. For example, Archibald and colleagues describe codesigning video resources with patients to increase understanding and reduce shame around the concept of frailty [\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e]. Patients have also partnered with researchers to design infographics that present patient-reported outcomes data from a community health survey back to the individuals who participated in the survey to support comprehensibility and action [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e], as well as promoting healthy behaviors for community members with varying levels of health literacy via infographics [\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eGiven the demonstrated impacts of patient partners on creating materials for lay audiences, and the growing consensus around the need for better integration of patient expertise in PC research [\u003cspan additionalcitationids=\"CR11 CR12 CR13\" citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e], this study aimed to engage primary care patients/caregivers, providers, and local health system representatives to create lay-friendly visualizations of regional and provincial primary care administrative data.\u003c/p\u003e \u003cdiv id=\"Sec2\" class=\"Section2\"\u003e \u003ch2\u003eCanada\u0026rsquo;s healthcare system\u003c/h2\u003e \u003cp\u003eCanada\u0026rsquo;s universal healthcare system supports the health of Canadians and involves funding and policy direction from federal, provincial, and territorial governments [\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e]. The Canada Health Act ensures that all eligible residents of Canada, including Indigenous peoples (First Nations, Inuit, and M\u0026eacute;tis), have coverage by a provincial or territorial healthcare insurance plan for all medically necessary health services [\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e, \u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e]. In addition to providing financial support for provincial and territorial health services, the federal government is responsible for funding or delivering direct healthcare services to specified groups of people including Inuit, on-reserve First Nations, Canadian Forces personnel, persons in federal penitentiaries, certain groups of refugees, and veterans [\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e]. The federal government and the ten provincial and three territorial health systems function independently of each other and are responsible for the management, organization, and delivery of healthcare, adhering to the conditions of the Canada Health Act to access federal funding [\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e, \u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e]. The Canadian healthcare system is characterized by the involvement of governments at multiple levels to support the health of Canadians through the provision of primary care, and the aspiration to provide primary health care [\u003cspan additionalcitationids=\"CR19\" citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e].\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eWhat is primary (health) care and why is it important?\u003c/h2\u003e \u003cp\u003eThe terms primary care (PC) and primary health care (PHC), while often treated as synonymous, refer to different concepts [\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e, \u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e]. PC is one component of PHC and refers to first point-of-contact services provided to individuals and families to sustain and promote their health and well-being across the lifespan [\u003cspan additionalcitationids=\"CR22\" citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e]. PC services are delivered by providers (e.g., family physicians, nurse practitioners) working together or separately, and occasionally in conjunction with teams of interdisciplinary providers [\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e, \u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e]. PC has been associated with better patient outcomes, lower rates of hospitalizations, and reduced Emergency Department visits, resulting in lower healthcare costs [\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e, \u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e, \u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e]. People who regularly receive PC are healthier, have longer life expectancies, and have lower mortality rates associated with heart disease, cancer, or stroke [\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e]. Furthermore, patients who receive PC from a consistent provider over time are happier with their care and more likely to follow medical advice [\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e].\u003c/p\u003e \u003cp\u003ePHC is a broader, more comprehensive term that describes a system-level approach to organizing PC services, using a population-based approach to ensure care is universally accessible, tailored to community needs, and explicitly delivered by interdisciplinary teams working in community-based organizations [\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e]. Rooted in a commitment to enhancing equity and social justice, PHC focuses on community and individual health while using population-level health and policy approaches to promote and sustain health (e.g., improving nutrition, water quality, and sanitation) [\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e, \u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e]. It therefore includes sectors of health (e.g., public health, community-based social services) beyond primary care [\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e, \u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e]. Though there have been calls for, and reforms aimed at moving towards providing comprehensive PHC, services in Canada have been argued to be more accurately described as \u0026lsquo;primary care\u0026rsquo; [\u003cspan additionalcitationids=\"CR27\" citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e]. Developing a high-performing PHC system that upholds the values and needs of the population is essential for the physical and emotional well-being of Ontario residents [\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eMany Canadians access PC services like preventive care and care and management of chronic conditions [\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e, \u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e]. However, as of September 2022, over 2\u0026nbsp;million people in Ontario do not have a regular PC provider. This number is expected to continue to rise due to population growth and reductions in the supply of primary care providers [\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e]. Additionally, the COVID-19 pandemic exacerbated preexisting stressors in primary care [\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e], increasing the demand for primary care services (e.g., increased complexity of patients post-infection, backlogs created from forgone care during the pandemic [\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e]) while simultaneously decreasing the supply of PC providers (e.g., further reduction of interest in PC as a speciality among medical graduates [\u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e], accelerated retirements of PC practitioners in response to administrative burdens of managing their practice during a pandemic [\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e], health care providers transitioning away from roles providing direct care to patients [\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e]). In Canada, this situation is widely acknowledged as a health human resource crisis in primary care [\u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e35\u003c/span\u003e, \u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e].\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec4\" class=\"Section2\"\u003e \u003ch2\u003ePC in Ontario\u003c/h2\u003e \u003cp\u003eOntario\u0026rsquo;s healthcare system has undergone several reforms to create a high-performing system and best support the health of residents[\u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e]. The introduction of Ontario Health Teams (OHTs) in 2019 can be seen as an example of reform to advance primary health care systems, (versus one to improve primary care service delivery). OHTs bring together self-organized groups of regionally-based hospitals, primary care organizations, and community services providers as well as representatives from long-term care, mental health, and paramedicine to integrate care across sectors, improve patient experience and reduce costs, using a population-based approach [\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e, \u003cspan additionalcitationids=\"CR39\" citationid=\"CR38\" class=\"CitationRef\"\u003e38\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e40\u003c/span\u003e]. Modelled after accountable care organizations in the United States, each OHT will aim to demonstrate eight requirements, or \u0026ldquo;building blocks\u0026rdquo; (Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e) [\u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e38\u003c/span\u003e, \u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e40\u003c/span\u003e, \u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e]. Like accountable care organizations, OHTs were designed to align with the Quadruple Aim, a framework for healthcare system quality introduced by Bodenheimer \u0026amp; Sinsky [\u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e], that places equal emphasis on 1) patient experiences of care, 2) provider experiences, 3) improve population health, and 4) reducing costs [\u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e38\u003c/span\u003e]. More recently, the Quintuple Aim has also been referenced as a framework guiding healthcare reform in Ontario. The Quintuple Aim recognizes equity and accessibility are necessary features of effective healthcare systems [\u003cspan citationid=\"CR43\" class=\"CitationRef\"\u003e43\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eOHTs are entities responsible for delivering care to a defined group of patients based on their specific needs. They require health and demographic data to understand both who their patients are and the needs of the populations they serve. OHTs receive provincial data and support (e.g., advice on implementation) to understand their population and health services use at a high level. Supplementing this high-level data with a more nuanced understanding of how each OHT population engages with and utilizes primary care specifically is necessary, given that the majority of healthcare is provided in primary care.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eThe eight building blocks of OHTs at maturity [\u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e40\u003c/span\u003e, \u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e]\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003e1\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eServe a defined patient population based on geographic location, local factors, and how patients access care in that region;\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e2\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eProvide comprehensive and integrated care for all conditions except those that require highly specialized care;\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e3\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eEnhance community engagement, patient partnership, and system co-design where patients and caregivers are appointed to leadership positions;\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e4\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eDeliver comprehensive and integrated care that includes round-the-clock support for system navigation;\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e5\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eIncorporate digital health solutions to support ongoing improvements in healthcare quality, healthcare delivery, and patient experience;\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e6\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eDetermine governance structure and working within a single framework that ensures clinical and financial accountability;\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e7\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eUtilize a funding and incentive structure based on the needs of their patient population;\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e8\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eProvide care based on evidence and clinical standards, focusing on ongoing improvements in healthcare quality and using the quadruple aim metrics to measure performance\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec5\" class=\"Section2\"\u003e \u003ch2\u003eData and Patient Engagement in Primary Healthcare\u003c/h2\u003e \u003cp\u003eINSPIRE-PHC (Innovations Strengthening Primary Health Care through Research- Primary Health Care) is a provincial research and policy partnership that produces primary care research, data support and expertise for health policy in Ontario. Their Primary Care Data Reports (PCDRs) address gaps in freely accessible, region-specific primary care data [\u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e44\u003c/span\u003e]. PCDRs are composed of Billing Data from primary care providers which contains data that can help regional health systems in Ontario better understand the people they care for including their: age, sex, income, health status (including diabetes, frailty, congestive heart failure, mental health condition), health care use (e.g., Emergency Department visits, hospitalizations), visits with primary care providers (number of visits, follow-ups after hospitalization) [\u003cspan additionalcitationids=\"CR46\" citationid=\"CR45\" class=\"CitationRef\"\u003e45\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR47\" class=\"CitationRef\"\u003e47\u003c/span\u003e]. First produced for the 2018\u0026ndash;2020 period, these reports represent a 2-year retrospective synthesis [\u003cspan citationid=\"CR48\" class=\"CitationRef\"\u003e48\u003c/span\u003e]. Some allow for primary care data metrics to be viewed publicly across other geographies of interest (e.g., reported by census tract and public health unit). This accessible, region-specific, publicly available data is foundational to plan health systems that advance the Quintuple Aim: better care outcomes and experiences for patients and caregivers, more resource-efficient health care systems, improved provider experience, and health equity [\u003cspan additionalcitationids=\"CR50\" citationid=\"CR49\" class=\"CitationRef\"\u003e49\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR51\" class=\"CitationRef\"\u003e51\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eThe concept of attachment enhances understanding of population health by grouping populations according to whether and how they receive PC services. Each OHT can access a spreadsheet outlining their population profile, organized by type of attachment to primary care (\u0026lsquo;attached\u0026rsquo;, \u0026lsquo;uncertainly attached\u0026rsquo;), prepared by INSPIRE-PHC researchers. The PCDR attachment algorithm considers patients to be attached in one of four ways [\u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e45\u003c/span\u003e]. The most common way patients are attached is by entering a formal agreement, called a patient enrolment model, in which patients commit to seeking treatment from their enrolling provider, who, in turn, agrees to provide comprehensive PC services to each of their enrolled patients [\u003cspan citationid=\"CR52\" class=\"CitationRef\"\u003e52\u003c/span\u003e]. In Ontario, 84% of attached patients are part of a patient enrolment model, and 11% are considered attached due to repeated visits to a primary care provider with \u0026gt;\u0026thinsp;10% continuity of care- a threshold that helps to distinguish providers working in walk-in clinics from other PC providers [\u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e45\u003c/span\u003e, \u003cspan citationid=\"CR48\" class=\"CitationRef\"\u003e48\u003c/span\u003e]. Children who visit the same pediatrician repeatedly and patients who have received primary care from a community health centre are also considered attached [\u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e45\u003c/span\u003e, \u003cspan citationid=\"CR48\" class=\"CitationRef\"\u003e48\u003c/span\u003e]. Patients not meeting one of the above four criteria are considered \u0026lsquo;uncertainly attached\u0026rsquo; [\u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e45\u003c/span\u003e, \u003cspan citationid=\"CR48\" class=\"CitationRef\"\u003e48\u003c/span\u003e]. \u0026lsquo;Uncertainly attached\u0026rsquo; patients are those who only seek care by visiting an emergency department (e.g., following an accident), classed as \u0026lsquo;healthy non-users\u0026rsquo;, or those who receive primary care from an inconsistent source (e.g., from multiple PC providers)[\u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e45\u003c/span\u003e, \u003cspan citationid=\"CR48\" class=\"CitationRef\"\u003e48\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eRecognizing the importance of patient partnership in achieving the Quintuple Aim, Patient Expertise in Research Collaboration (PERC), a patient-oriented research centre within INSPIRE-PHC, was established to enable authentic partnerships with patient and public partners [\u003cspan citationid=\"CR53\" class=\"CitationRef\"\u003e53\u003c/span\u003e]. It aims to promote and support meaningful and appropriate engagement of patients in primary health care (PHC) research in Ontario and beyond. PERC is funded by OSSU (Ontario SPOR Support Unit), one of eleven Canadian Support Units that support Canada\u0026rsquo;s Strategy for Patient Oriented Research (SPOR), which is led by the Canadian Institutes of Health Research[\u003cspan citationid=\"CR54\" class=\"CitationRef\"\u003e54\u003c/span\u003e, \u003cspan citationid=\"CR55\" class=\"CitationRef\"\u003e55\u003c/span\u003e]. In alignment with SPOR, PERC engages researchers, people with lived experience, and health system representatives in active partnerships to improve health outcomes and enhance health service delivery [\u003cspan citationid=\"CR56\" class=\"CitationRef\"\u003e56\u003c/span\u003e]. It has an Advisory Board composed of primary care patients with personal experience living with chronic illness or life-limiting conditions, family and friend caregivers, and researchers. PERC meaningfully engages Advisory Board members as strategic partners in research across all stages of the research process and patient-oriented research capacity development activities [\u003cspan citationid=\"CR55\" class=\"CitationRef\"\u003e55\u003c/span\u003e, \u003cspan citationid=\"CR56\" class=\"CitationRef\"\u003e56\u003c/span\u003e]. PERC Advisors are diverse in age, gender, ethnicity, and geography (from urban, rural, and suburban areas in Ontario, Canada).\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec6\" class=\"Section2\"\u003e \u003ch2\u003eStudy Purpose\u003c/h2\u003e \u003cp\u003eThis project aimed to create visualizations of PC data by engaging PC patients/caregivers, providers, and local health system representatives. It was funded through a provincial Applied Health Research Question (AHRQ) granting stream designed to provide research evidence to support health system decision-making by linking provincially funded health researchers with representatives from health organizations [\u003cspan citationid=\"CR57\" class=\"CitationRef\"\u003e57\u003c/span\u003e]. In AHRQ-funded research, health system representatives identify a priority topic or question that would benefit from research evidence, and how the findings will inform planning, service delivery, policies, or programs [\u003cspan citationid=\"CR57\" class=\"CitationRef\"\u003e57\u003c/span\u003e]. Herein, the Greater Hamilton Health Network (GHHN) worked with PERC\u0026rsquo;s leads and Advisory Board to propose a project about patient partnership and primary care data infographic creation within this OHT to inform regional planning.\u003c/p\u003e \u003cp\u003eThe GHHN is responsible for integrating the care of approximately 600,000 people. Its strategic plan explicitly prioritizes addressing health inequities amongst this population and emphasizes providing equitable and continuous care that actively improves population health and meets the individual needs of its community [\u003cspan citationid=\"CR58\" class=\"CitationRef\"\u003e58\u003c/span\u003e]. Importantly, primary care engagement is one of their strategic plan's five core priorities, and patient/community engagement is one of its three overarching guiding principles [\u003cspan citationid=\"CR58\" class=\"CitationRef\"\u003e58\u003c/span\u003e]. At the time the project was initiated, the GHHN was aware of the release of PCDRs and wanted to understand how to use these data to support the delivery of integrated PHC to their attributed population. They were also interested in how PCDRs could help them communicate with the public about their decision-making processes, and how working in partnership with patients to ensure these conversations were centred around the needs of patients and families.\u003c/p\u003e \u003cp\u003ePERC researchers partnered with the GHHN to facilitate understanding: i) what elements of primary care data were most important to patients and the public, ii) how patients and OHTs can co-produce visualizations of primary care data using patient-identified priorities, iii) how visuals can inform the work of OHTs, and iv) how the visuals can be shared with the public. The GHHN felt that project outputs could support communication with the public about the accessibility of PC within their OHT and provincially. They also wanted to contribute to a broader, national conversation about the PC system. Presenting understandable information to the public about attachment to primary care would raise awareness about the health human resources crisis in PC, and could support initiatives to improve its accessibility in Canada.\u003c/p\u003e \u003c/div\u003e"},{"header":"Methods","content":"\u003cp\u003eWorking in partnership with the GHHN as knowledge users, PERC and its Advisory Board engaged primary care patients/caregivers, providers, OHT representatives, and a graphic designer in virtual meetings to create lay-friendly visualizations of local/provincial primary care data [\u003cspan citationid=\"CR59\" class=\"CitationRef\"\u003e59\u003c/span\u003e]. This project combined aspects of participatory design with evidence-based guidance for developing public health infographics. Participatory design is a method that empowers end-users to make design decisions and includes three stages: initial exploration of work; discovery processes; and prototyping [\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e, \u003cspan citationid=\"CR59\" class=\"CitationRef\"\u003e59\u003c/span\u003e]. Stones and Gent [\u003cspan citationid=\"CR59\" class=\"CitationRef\"\u003e59\u003c/span\u003e] outline seven principles of public health infographic design were used to ensure audience, color, alignment, prioritization, highlighting, imagery, and charts were considered. Our approach to engagement was best aligned with Transformative Action Research, where the researcher becomes a facilitator, taking direction from community members to plan research projects, generate questions, gather and analyze data, and return data to the community for reflection and action [\u003cspan citationid=\"CR60\" class=\"CitationRef\"\u003e60\u003c/span\u003e, \u003cspan citationid=\"CR61\" class=\"CitationRef\"\u003e61\u003c/span\u003e]. Transformative Action Research\u0026rsquo;s emphasis on doing research with (as opposed to for) community members aligned well with PERC\u0026rsquo;s and the GHHN\u0026rsquo;s approaches to engagement [\u003cspan citationid=\"CR62\" class=\"CitationRef\"\u003e62\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eA series of meetings with patient/caregiver advisors, OHT representatives, trainees and researchers were held to provide orientation to PCDRs, share early findings about primary care locally and provincially, facilitate small-group infographic design discussions, and iteratively refine prototypes (Fig.\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e). These meetings were informed by a co-developed engagement and dissemination strategy with patient partners that specified how i) this project was prepared for and focused, ii) data was collected and analyzed, and iii) results (including this manuscript) were constructed and disseminated (Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eIn meeting one, INSPIRE-PHC representatives gave a presentation on PCDRs and discussed related opportunities with PERC\u0026rsquo;s Advisory Board. Advisors were interested in the information in PCDRs and noted how this information could both bring public attention to the shortage of family doctors and support efforts to increase provider supply. They also noted the complexity of synthesizing information from the PCDR spreadsheets and felt significant expertise was needed to make sense of the reports. They identified an opportunity for PERC to support the translation of PCDR findings for the public. Following meeting one, a successful AHRQ grant with PERC patient advisors as co-applicants was developed. GHHN patient advisors were subsequently invited to become involved. The lead author met with each of the five GHHN advisors interested in the project to provide an orientation to PERC and the project and understand their preferences for being engaged (e.g., communication, honoraria, any required supports) [\u003cspan citationid=\"CR63\" class=\"CitationRef\"\u003e63\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eMeeting agendas with specific discussion questions were shared a few days before meetings. Summary notes were recorded by a PERC project coordinator and shared with project partners after sessions to ensure an accurate reflection of the conversation. Those unable to attend a meeting were encouraged to share feedback on draft infographics for incorporation into meeting notes. PERC researchers analyzed these notes to identify aspects of the visuals to revise and communicate them to a graphic designer. Analyzing meeting notes served as a form of process tracing, an evaluation method that has been used to identify the impacts of involving patients and the public in research [\u003cspan citationid=\"CR64\" class=\"CitationRef\"\u003e64\u003c/span\u003e, \u003cspan citationid=\"CR65\" class=\"CitationRef\"\u003e65\u003c/span\u003e]. All patient partners were provided with honorariums to acknowledge their lived expertise (\u003cspan\u003e$\u003c/span\u003e25 per hour for time spent preparing for and contributing to meeting discussions and document review) and, given their significant contributions across all stages of this project, were invited to be co-authors of the infographics and this manuscript [\u003cspan citationid=\"CR66\" class=\"CitationRef\"\u003e66\u003c/span\u003e]. This research project was approved by the Hamilton Integrated Research Ethics Board at McMaster University in Ontario, Canada under Project #13199.\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003cp\u003eFigure \u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e Caption: Eight text boxes appear horizontally across the page with an arrow pointing to the right between each box. Each box indicates the meeting number, the date, and the topic discussed.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eOur Process: Transformative Action Research\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e \u003cp\u003e1. Planning and Preparation\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eIdentify members of the team\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMeeting 1: INSPIRE-PHC representatives gave overview of PCDR at PERC Advisory Board Meeting, discussed opportunities for knowledge translation.\u003c/p\u003e \u003cp\u003ePartnered with knowledge user partners (GHHN) to complete AHRQ application. GHHN leads suggest consulting PC clinicians (via a GHHN Advisory Group) in project scoping.\u003c/p\u003e \u003cp\u003eSecured graphic design support.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eOutline a conceptual framework using participatory principles\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eLaying out the research plan (e.g., refining aims and processes of project plan with PERC patient advisors, providing additional orientation to PCDR project, understanding advisors\u0026rsquo; interest/availability for project.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDefine parameters for the process\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003ePERC research staff met individually with 5 GHHN patient partners to provide orientation, understand engagement preferences.\u003c/p\u003e \u003cp\u003eMeeting 2 topics: similarities between GHHN and PERC engagement approaches, timelines, deliverables.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNegotiate the purpose, objectives of the project, and transformative action approach\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMeeting 2 topics: each partner\u0026rsquo;s connection to the topic, GHHN primary care priorities/how PCDR could support them\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAssess enabling and inhibiting factors\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMeeting 2 topics: background, context, limitations of PCDR, defining terms.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e \u003cp\u003e2. \u003cb\u003eGenerating questions\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCollectively identify focus of project\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMeeting 3 topics: PERC researchers present/discuss project, aims, sharing preliminary findings (GHHN/ON comparison) with PC clinicians from GHHN Advisory Group.\u003c/p\u003e \u003cp\u003eMeeting 4 topic: discuss audience(s) for visuals\u0026nbsp;and how to frame messages for audience(s).\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e \u003cp\u003e3. \u003cb\u003eData gathering, and analysis\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eProvide feedback on the quality of data gathered\u003c/p\u003e \u003cp\u003eAnalyze data collectively\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMeeting 4 topics: discuss first draft of visual (comparing GHHN and ON attachment data)\u003c/p\u003e \u003cp\u003eMeeting 5 topics: discuss second draft of visual (GHHN/ON\u003c/p\u003e \u003cp\u003ecomparison with additional background information/definitions)\u003c/p\u003e \u003cp\u003eMeeting 6 topics: discuss third draft of visual (1 background infographic, 1 to share PCDR results)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e \u003cp\u003e4. \u003cb\u003eReturning data to community, reflection, and action\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eReturn data to communities for: interpretation, reflection, dissemination, and decision making\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMeeting 5, 6 topics: determine aesthetics and design features, co-create key messages, and dissemination strategies\u003c/p\u003e \u003cp\u003eMeeting 7 topics: future of publicly available PC attachment data, limitations\u0026nbsp;of working with administrative data (e.g., can quickly become out of date)\u003c/p\u003e \u003cp\u003eMeeting 8 topics: developing plan for co-authored peer-reviewed manuscript\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e"},{"header":"Results","content":"\u003cp\u003eUp to 14 patient/caregiver partners, four researchers, one GHHN staff and two primary care trainees were involved in six 90-minute meetings, conducted virtually between January 2022 and February 2024. Two other GHHN staff were unavailable to attend meetings but reviewed and provided feedback on iterations of the infographics by email. All nine patient/caregiver advisors from PERC and five (of the sixteen invited) patient/caregiver partners from the GHHN chose to be research partners on this project. On average, 9 of 14 patient/caregiver advisors attended per meeting. None of the six meetings were attended by fewer than 7 patient/caregiver partners. Two Ontario-based primary health care Graduate Student Trainees were also involved in all project activities as part of PERC\u0026rsquo;s yearly Patient Engagement Training Fellowship, which supports trainees via presentation opportunities and advice from PERC Advisors on incorporating patient perspectives into their graduate research. The results are described chronologically (see Fig.\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e for the Engagement Timeline). Table\u0026nbsp;\u003cspan refid=\"Tab3\" class=\"InternalRef\"\u003e3\u003c/span\u003e summarizes strategic input received from PC clinicians and Table\u0026nbsp;\u003cspan refid=\"Tab4\" class=\"InternalRef\"\u003e4\u003c/span\u003e describes patient/project partner feedback as it relates to principles of infographic design.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab3\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 3\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eFeedback received from clinicians and decisionmakers\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"1\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eClinician \u0026amp; decision-maker perspectives\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u0026bull; Emphasized that good quality primary care data to guide local decision-making is valued and welcomed.\u003c/p\u003e \u003cp\u003e\u0026bull; Expressed interest in support to better understand PCDR data. Having PERC\u0026rsquo;s support to examine the data in greater detail was a value-add to the project.\u003c/p\u003e \u003cp\u003e\u0026bull; Advised against losing sight of the goal of \u0026lsquo;Attachment for all\u0026rsquo; by focusing too narrowly on those with PHC needs but not access.\u003c/p\u003e \u003cp\u003e\u0026bull; Discussed the consideration of using PCDR data as a public-facing measure of attachment and expressed caution that PHC access may worsen before it improves.\u003c/p\u003e \u003cp\u003e\u0026bull; Identified the role that PCDR data could play in guiding public-facing, educational and/or awareness-raising campaigns about PHC locally and generating public interest in advocacy.\u003c/p\u003e \u003cp\u003e\u0026bull; Acknowledged the value of patient advisor perspectives on attachment issues (e.g., people who are racialized or those living with low incomes disproportionately experience uncertain attachment, even exclusion from the PHC system).\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab4\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 4\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eFeedback received from patient, project partners\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"1\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePrinciples of Infographic Design (G.R.A.P.H.I.C. [49])\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eG - Get to know your Audience\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u0026bull; Acknowledge and be open about data limitations in the PCDR (e.g., health equity data).\u003c/p\u003e \u003cp\u003e\u0026bull; Define words/concepts (e.g., attachment, continuity), reduce technical words, and aim for a grade 8 reading level.\u003c/p\u003e \u003cp\u003e\u0026bull; Use consistent language (e.g., \u0026ldquo;inconsistent PC provider\u0026rdquo; vs. \u0026ldquo;uncertainly attached\u0026rdquo;).\u003c/p\u003e \u003cp\u003e\u0026bull; Use \u0026ldquo;mental health issues\u0026rdquo;, instead of \u0026ldquo;illness\u0026rdquo;.\u003c/p\u003e \u003cp\u003e\u0026bull; Consider where the infographic will be shared when creating it.\u003c/p\u003e \u003cp\u003e\u0026bull; Create an accessible, engaging, and educational infographic for the public.\u003c/p\u003e \u003cp\u003e\u0026bull; Raise awareness and encourage engagement among the public.\u003c/p\u003e \u003cp\u003e\u0026bull; Prioritize the needs/interests of the public when choosing which data to include. Use bullet points, not full sentences.\u003c/p\u003e \u003cp\u003e\u0026bull; Create two shorter documents (vs. one long document) to make the content more digestible.\u003c/p\u003e \u003cp\u003e\u0026bull; Clarify that PC providers can be team-based and use broader language when referring to them (e.g., use \u0026ldquo;healthcare providers\u0026rdquo; vs. \u0026ldquo;doctor\u0026rdquo;).\u003c/p\u003e \u003cp\u003e\u0026bull; Include resources for finding PC providers.\u003c/p\u003e \u003cp\u003e\u0026bull; Consider accessibility for folks without phones or internet access.\u003c/p\u003e \u003cp\u003e\u0026bull; Consider multiple delivery formats (e.g., video, bookmarks, flyers, shorter versions of the infographics).\u003c/p\u003e \u003cp\u003e\u0026bull; Use brochure format for printed materials (e.g., paper folded in three).\u003c/p\u003e \u003cp\u003e\u0026bull; Add a QR code to link to INSPIRE-PHC and PCDR\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eR- Restrict Colour\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u0026bull; Keep the GHHN colour scheme, as it is welcoming, and non-abrasive.\u003c/p\u003e \u003cp\u003e\u0026bull; Ensure the content \u0026ldquo;pops\u0026rdquo; when printed in grayscale.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eA- Align Elements\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u0026bull; Increase font size/decrease margin size for accessibility.\u003c/p\u003e \u003cp\u003e\u0026bull; Create white space at the bottom of the page.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eP- Prioritise Parts\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u0026bull; Prioritize definitions and background over visuals comparing attachment rates.\u003c/p\u003e \u003cp\u003e\u0026bull; Highlight the benefits, risks, and importance of PC/attachment, without implying blame on those without PC providers.\u003c/p\u003e \u003cp\u003e\u0026bull; Frame the concept of attachment as \u0026ldquo;value-added\u0026rdquo; (e.g., attached patients have lower costs).\u003c/p\u003e \u003cp\u003e\u0026bull; Highlight actions the public (including \u0026lsquo;uncertainly attached\u0026rsquo; patients) can take.\u003c/p\u003e \u003cp\u003e\u0026bull; Condense, or move the data about attachment types to the end of the draft.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eH- Highlight the Heading\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u0026bull; Consider using a question format for the title and subtitles to engage the audience.\u003c/p\u003e \u003cp\u003e\u0026bull; Consider changing \u0026ldquo;Understanding primary care in Ontario\u0026rdquo; to \u0026ldquo;Who is my first point of contact with the healthcare system?\u0026rdquo;\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eI- Invest in Imagery (wisely)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u0026bull; Include visual representations of the content/definitions.\u003c/p\u003e \u003cp\u003e\u0026bull; \u0026ldquo;Humanize\u0026rdquo; the infographic with patient-provider images.\u003c/p\u003e \u003cp\u003e\u0026bull; Add a graphic to indicate the GHHN\u0026rsquo;s location.\u003c/p\u003e \u003cp\u003e\u0026bull; Remove binary gender icon.\u003c/p\u003e \u003cp\u003e\u0026bull; Differentiate hyperlinks with colour or font size.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eC- Choose Charts Carefully\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u0026bull; Add definitions for some of the variables in the chart\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab5\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 5\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eGuidance for Reporting Involvement of Patients and the Public (GRIPP2) Long Form Table\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"3\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSection and topic\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eItem\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eReported on page No\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"3\" nameend=\"c3\" namest=\"c1\"\u003e \u003cp\u003eSection 1: Abstract of paper\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e1a: Aim\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eReport the aim of the study\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e3\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e1b: Methods\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eDescribe the methods used by which patients and the public were involved\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e3\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e1c: Results\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eReport the impacts and outcomes of PPI in the study\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e3\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e1d:Conclusions\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eSummarise the main conclusions of the study\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e3\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e1e: Keywords\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eInclude PPI, \u0026ldquo;patient and public involvement,\u0026rdquo; or alternative terms as keywords\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e4\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"3\" nameend=\"c3\" namest=\"c1\"\u003e \u003cp\u003eSection 2: Background to paper\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e2a: Definition\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eReport the definition of PPI used in the study and how it links to comparable studies\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e10\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e2b: Theoretical underpinnings\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eReport the theoretical rationale and any theoretical influences relating to PPI in the study\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e4,5, 7\u0026ndash;10\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e2c: Concepts and theory development\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eReport any conceptual or theoretical models, or influences, used in the study\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e4\u0026ndash;5, 12\u0026ndash;14\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"3\" nameend=\"c3\" namest=\"c1\"\u003e \u003cp\u003eSection 3: Aims of paper\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e3: Aim\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eReport the aim of the study\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e11\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"3\" nameend=\"c3\" namest=\"c1\"\u003e \u003cp\u003eSection 4: Methods of paper\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e4a: Design\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eProvide a clear description of methods by which patients and the public were involved\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e12\u0026ndash;14\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e4b: People involved\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eProvide a description of patients, carers, and the public involved with the PPI activity in the study\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e12\u0026ndash;14\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e4c: Stages of involvement\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eReport on how PPI is used at different stages of the study\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e15\u0026ndash;16\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e4d: Level or nature of involvement\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eReport the level or nature of PPI used at various stages of the study\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e15\u0026ndash;16\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"3\" nameend=\"c3\" namest=\"c1\"\u003e \u003cp\u003eSection 5: Capture or measurement of PPI impact\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e5a: Qualitative evidence of impact\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eIf applicable, report the methods used to qualitatively explore the impact of PPI in the study\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e14\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e5b: Quantitative evidence of impact\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eIf applicable, report the methods used to quantitatively measure or assess the impact of PPI\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eN/R\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e5c: Robustness of measure\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eIf applicable, report the rigour of the method used to capture or measure the impact of PPI\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eN/R\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"3\" nameend=\"c3\" namest=\"c1\"\u003e \u003cp\u003eSection 6: Economic assessment\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e6: Economic assessment\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eIf applicable, report the method used for an economic assessment of PPI\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eN/R\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"3\" nameend=\"c3\" namest=\"c1\"\u003e \u003cp\u003eSection 7: Study results\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e7a: Outcomes of PPI\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eReport the results of PPI in the study, including both positive and negative outcomes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e16\u0026ndash;24\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e7b: Impacts of PPI\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eReport the positive and negative impacts that PPI has had on the research, the individuals involved (including patients and researchers), and wider impacts\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e16\u0026ndash;24\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e7c: Context of PPI\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eReport the influence of any contextual factors that enabled or hindered the process or impact of PPI\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e16\u0026ndash;24\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e7d: Process of PPI\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eReport the influence of any process factors, that enabled or hindered the impact of PPI\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e16\u0026ndash;24\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e7ei: Theory development\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eReport any conceptual or theoretical development in PPI that have emerged\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eN/R\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e7eii: Theory development\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eReport evaluation of theoretical models, if any\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eN/R\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e7f: Measurement\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eIf applicable, report all aspects of instrument development and testing (eg, validity, reliability, feasibility, acceptability, responsiveness, interpretability, appropriateness, precision)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eN/R\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e7 g: Economic assessment\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eReport any information on the costs or benefit of PPI\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eN/R\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colspan=\"3\" nameend=\"c3\" namest=\"c1\"\u003e \u003cp\u003eSection 8: Discussion \u0026amp; Conclusion\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e8a: Outcomes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eComment on how PPI influenced the study overall. Describe positive and negative effects\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e25\u0026ndash;28\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e8b: Impacts\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eComment on the different impacts of PPI identified in this study and how they contribute to new knowledge\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e25\u0026ndash;28\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e8c: Definition\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eComment on the definition of PPI used (reported in the \u003cspan refid=\"Sec1\" class=\"InternalRef\"\u003eBackground\u003c/span\u003e section) and whether or not you would suggest any changes\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eN/R\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e8d: Theoretical underpinnings\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eComment on any way your study adds to the theoretical development of PPI\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eN/R\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e8e: Context\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eComment on how context factors influenced PPI in the study\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e28\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e8f: Process\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eComment on how process factors influenced PPI in the study\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e29\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e8 g: Measurement and capture of PPI impact\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eIf applicable, comment on how well PPI impact was evaluated or measured in the study\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eN/R\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e8 h: Economic assessment\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eIf applicable, discuss any aspects of the economic cost or benefit of PPI, particularly any suggestions for future economic modelling.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003eN/R\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e8i: Reflections/critical perspective\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eComment critically on the study, reflecting on the things that went well and those that did not, so that others can learn from this study\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e30\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003ctfoot\u003e \u003ctr\u003e\u003ctd colspan=\"3\"\u003eN/R\u0026thinsp;=\u0026thinsp;not reported\u003c/td\u003e\u003c/tr\u003e \u003c/tfoot\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003ePERC and GHHN partners met for the first time in Meeting 2. A Project Summary and Meeting Agenda were shared a few days before the session. Attendees described their connection to and interest in the project during introductions. PERC researchers outlined how PERC and GHHN approaches mutually emphasized clear communication and the importance of inclusive, diverse perspectives in engagement. They also gave an overview of PCDRs. The discussion that followed touched on populations that are not represented in PCDR (e.g., residents of long-term care homes, Indigenous peoples living on a reserve). Some patient partners asked how the idea of \u0026lsquo;attachment\u0026rsquo; to primary care was defined, who was involved, and if patient partners contributed. Others shared their perception of what \u0026lsquo;being attached\u0026rsquo; to primary care meant, and, in contrast with the PCDR definition, emphasized the importance of relationship quality, availability of their provider and continuity with the same provider. Hearing from partners that \u0026lsquo;attachment\u0026rsquo; may not be an intuitive term, and how preconceptions related to the idea of attachment were not addressed by PCDR data (e.g., provider relationship quality), were critical in learning the needs of our audience. The discussion also confirmed the importance of transparency regarding data limitations, especially regarding populations that may experience difficulties accessing PC services.\u003c/p\u003e \u003cp\u003eIn Meeting 3, GHHN staff invited PERC researchers to give a presentation on PCDR to a working group of PC clinicians. The presentation included an overview of the data source, and PCDR results comparing GHHN with the province. Variables where the region differed significantly (5\u0026ndash;10% or more) from provincial-level rates were highlighted. Given that \u0026lsquo;uncertainly attached\u0026rsquo; patients who only receive care by visiting an Emergency Department, are often referred to as \u0026lsquo;healthy non-users\u0026rsquo;, the presentation containing [\u003cspan citationid=\"CR48\" class=\"CitationRef\"\u003e48\u003c/span\u003e] our analyses excluded this group (65% of \u0026lsquo;uncertainly attached\u0026rsquo; patients). We instead focused on the 35% of \u0026lsquo;uncertainly attached\u0026rsquo; patients who demonstrated need, but were not able to access a consistent primary care provider[\u003cspan citationid=\"CR48\" class=\"CitationRef\"\u003e48\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eAfter the presentation, clinicians responded to this choice, noting that the goal should be to attach every patient, not just those with acute PC needs. The clinicians noted the role that PC plays in preventing disease among those who are well, implying healthy non-users of PC may miss out on this upstream, preventative care. The clinicians were excited by the promise of high-quality PC data to support local decision-making and were interested in having additional support to analyze PCDRs. This group envisioned PCDR data supporting a public conversation about attachment and building awareness about the importance of primary care. Table\u0026nbsp;\u003cspan refid=\"Tab3\" class=\"InternalRef\"\u003e3\u003c/span\u003e lists additional feedback we received from this group.\u003c/p\u003e \u003cp\u003eA draft infographic highlighting differences between \u0026lsquo;attached\u0026rsquo; and \u0026lsquo;uncertainly-attached\u0026rsquo; patients was developed with a graphic designer between Meetings 3 and 4. Outcomes relating to health equity were highlighted and, as in Meeting 3, metrics where a significant difference (\u0026ge;\u0026thinsp;5\u0026ndash;10%) between attached patients and those who demonstrate need, but not access to a consistent PC provider, were prioritized. The first draft also differentiated between these groups at the local and provincial levels. The metrics demonstrating significant difference were age, sex, morbidity, and mental illness.\u003c/p\u003e \u003cp\u003eIn Meeting 4, virtual break-out group discussions were held with project partners (7 patient partners, 1 GHHN staff, 2 trainees, 3 PERC researchers). Discussions indicated that we needed clear and consistent explanations of the following terms: uncertain attachment, morbidity, chronic conditions, and PC provider. PERC researchers explained how billing code data and PCDR definitions of topics like sex (e.g., not gender) and mental health (e.g., explicit diagnoses versus more transient mental health issues) differed from how patient advisors told us they considered these terms. This emerged as a sort of tension between how billing codes simplify experiences that were more nuanced to patients.\u003c/p\u003e \u003cp\u003eThe group indicated that the definitions of these concepts should occur before presenting PCDR results as they are prerequisites to understanding the findings. Patient- and project partners asked that we prioritize the implications of not being attached, emphasizing how ongoing access to PC contributes to maintaining one\u0026rsquo;s health. Patient- and project partners also suggested that actions for \u0026lsquo;uncertainly attached\u0026rsquo; patients to take to become attached be included in the infographic. During this session, it was recommended that images be used to support understanding of the terms to be added and that images of people or providers could \u0026lsquo;humanize\u0026rsquo; the data. The group suggested a question-style title (e.g., \u0026lsquo;Am I attached?\u0026rsquo;) could draw interest better than a generic title about PCDR data locally and regionally.\u003c/p\u003e \u003cp\u003eIn Meeting 4, questions to better define the audience were asked to determine whether there was a specific segment of the public that the infographics should aim to reach. Comments from the group indicated that an appealing visual for the public would also be understandable and educational for providers. In response to the request for additional detail and definitions of concepts, the second draft was twice as long as the first. Patient/project partners felt splitting the material into two shorter (2-page) documents might be better than one 4-page visual. Many group members also stated that the text was now quite complex and needed to be simplified to a Grade 8 reading level to make the content digestible by the public. Patient partners also noted that patients without internet access could not use the website resources included in this iteration to support finding a PC provider. It was recommended that phone numbers for these resources be added. Project partners emphasized that messaging be neutral and avoid any sense of blame on individual patients for not having a PC provider. They also identified that text explaining what Physician Billing Codes could be removed. The group approved the colour scheme (light and dark blue) as it integrated PERC and GHHN logos and branding well.\u003c/p\u003e \u003cp\u003eBetween Meetings 4 and 5, PERC researchers conveyed feedback on the first draft to the graphic designer and requested revisions. The graphic designer had experience iteratively incorporating feedback from patient research partners into their designs. A second draft was developed and shared, with a meeting agenda containing questions about the second draft circulated. To emphasize the importance of attachment, metrics about income, newcomers, minorities, and housing instability were added, to demonstrate how these characteristics differed between attached and patients with need, but not access to primary care.\u003c/p\u003e \u003cp\u003eBetween Meetings 5 and 6, PERC researchers shared comments from the meeting with the graphic designer for revision. A communications advisor from the university was consulted to reduce the complexity of the text to a Grade 8 Reading Level; text on previous iterations had been higher than a grade 13 level. A third draft was shared with the group. Meeting 6\u0026rsquo;s discussion centred around finding an engaging heading/title that spoke to the public, even those, such as newcomers who may not be familiar with the term \u0026lsquo;primary care provider\u0026rsquo; or know the role that primary care plays in maintaining health (e.g., including prescribing medications and referring patients to specialist services). It was suggested that the term \u0026lsquo;doctor\u0026rsquo; would be universally understood, a comment that was balanced by other comments noting how it may not be helpful for the infographic to promote the idea that physicians are the sole primary care providers, given the important roles played by other disciplines in providing team-based PC. The group discussed the dissemination strategy for the completed visuals, and project partners were invited to co-author conference presentations.\u003c/p\u003e \u003cp\u003eBetween Meetings 6 and 7, PERC researchers worked with the graphic designer to integrate suggested edits. A final draft was presented to project partners by email. Project partners were invited to provide additional feedback on this draft by email or telephone with PERC researchers. These recommendations were subsequently integrated into the final draft (Figs.\u0026nbsp;2\u0026ndash;5). The final draft was presented to, and discussed with, the primary care clinicians that attended Meeting 3. This discussion centred around the implications of a second iteration of PCDR data (2020\u0026ndash;2022) that would include changes seen in PC during the COVID-19 pandemic.\u003c/p\u003e \u003cp\u003eIn Meeting 8, project partners came together to discuss an early draft of this manuscript and their interest in co-authorship. As part of our process tracing approach, and as aligned with best practice for reporting details about patient engagement [\u003cspan citationid=\"CR67\" class=\"CitationRef\"\u003e67\u003c/span\u003e], we asked project partners to describe their experience working on the project. We sought their perceptions about what the aim of engagement was, how they felt they impacted the process and outcomes of engagement in this work, and any insights or lessons learned that they felt would be worthwhile to share in this paper.\u003c/p\u003e \u003cdiv id=\"Sec9\" class=\"Section2\"\u003e \u003ch2\u003eEngagement process\u003c/h2\u003e \u003cp\u003eMeeting notes from this session indicated that patient advisors saw the aim of engagement being to ensure conversations about PC attachment included those with lived experience, in addition to expertise from policy, research and practice. The advisors felt that the engagement approach was inclusive, which was exemplified by the partners feeling comfortable enough to share their personal experiences of attachment during the discussions. The patient advisors described the value associated with having been involved early in the process and throughout the project. They felt that their lived experiences as patients and caregivers \u0026lsquo;brought life to stats\u0026rsquo;, enhanced the final product, and helped to \u0026lsquo;put the word out\u0026rsquo; about a resource that they hope will be helpful to others.\u003c/p\u003e \u003cp\u003eThe group described the engagement process as iterative, where their suggestions were heard and integrated into subsequent infographic drafts. One advisor noted that the project was successful because people were asked \u0026ldquo;How can we make things better\u0026rdquo; and their suggestions were heard and implemented. Another identified how the team approach to engagement led to interesting results. When asked how their contributions impacted the infographics, advisors said their emphasis on equity and diversity, along with their suggestions about simplifying language and adding definitions made the infographics more inclusive, so that anyone would be able to understand the final product. They felt that a project to share PC data with the public \u0026lsquo;should not be done in a vacuum\u0026rsquo; and that including patient partners helped researchers better understand how attachment to a PC provider (or lack thereof) impacted the health and well-being of patients. The partners reviewed and approved the final versions of the infographics and supported their dissemination. Partners also provided valuable suggestions regarding an earlier draft of this manuscript. They recommended more context in the \u003cspan refid=\"Sec1\" class=\"InternalRef\"\u003ebackground\u003c/span\u003e section, and the inclusion of quotes to describe their comments during Meeting 8.\u003c/p\u003e \u003cp\u003eAt the end of the study, project partners also described how their involvement with this project impacted them. A partner working in the health system said the project offered valuable learning about how to communicate with the public about primary care. A patient advisor said the topic of attachment resonated with them, that it was valuable to engage in research that felt relevant, and validating to know that their \u0026lsquo;experience is valid to the big picture\u0026rsquo;. Another patient advisor noted that their positive experience being engaged in this project motivated them to return to Meeting 8 (11 months later) and contribute to developing this manuscript.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec10\" class=\"Section2\"\u003e \u003ch2\u003e* Insert Figs.\u0026nbsp;2\u0026ndash;5 here *\u003c/h2\u003e \u003cp\u003eFigures 2,3: Infographic 1: Who is my first point of contact with the healthcare system\u003c/p\u003e \u003cp\u003eFigures 4,5: Infographic 2: People with family doctors in the Greater Hamilton Health Network and Ontario\u003c/p\u003e \u003c/div\u003e"},{"header":"Discussion","content":"\u003cdiv id=\"Sec12\" class=\"Section2\"\u003e \u003ch2\u003eFindings summary\u003c/h2\u003e \u003cp\u003eA partnership between patient advisors, regional health system representatives, researchers, and trainees was established to co-produce public-facing visualizations of primary care data. Using a transformative action research approach, we worked together to decide who would be involved, how we would work together, and what the aims, timelines and constraints of the project would be. Over six meetings, project partners shared feedback on draft infographics, audience delineation (including how they conceived of health care and primary care), priority element identification from a primary care data resource, and advising on aesthetic features (e.g., headings, colour scheme and charts). Advice from project partners led to two 2-page infographics aimed at the public being created. The first defined relevant terms and promoted a shared understanding of the roles and impacts of primary care. The second infographic presented priority metrics (age, sex, income, new-to-Ontario, visible minority, housing instability and mental health diagnosis) from a PCDR, comparing the population-level data for the GHHN and Ontario. The group co-designed the colour scheme, brainstormed multiple headings and emphasized the importance of imagery in the infographics.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec13\" class=\"Section2\"\u003e \u003ch2\u003eImplications of findings\u003c/h2\u003e \u003cp\u003eThis research responds to calls in the literature for increased patient engagement in knowledge translation and research using administrative data [\u003cspan citationid=\"CR68\" class=\"CitationRef\"\u003e68\u003c/span\u003e, \u003cspan citationid=\"CR69\" class=\"CitationRef\"\u003e69\u003c/span\u003e]. Previous authors have described the utility of using infographics and videos to increase health literacy and promote self-management for individuals [\u003cspan additionalcitationids=\"CR8\" citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e]. To our knowledge, this is the first example of working with patient advisors to co-create a visual depiction of population-level data on attachment to primary care. Our process to engage patients and visualize data corresponds with a recent review outlining strategies to enhance public health data literacy for the general population, and especially equity-deserving groups, in Canada [\u003cspan citationid=\"CR70\" class=\"CitationRef\"\u003e70\u003c/span\u003e].\u003c/p\u003e \u003cp\u003ePrevious authors have identified the importance of visuals in enhancing understanding of health-related topics. By reducing the mental load of interpreting information, visuals help people process complex information faster [\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e, \u003cspan citationid=\"CR71\" class=\"CitationRef\"\u003e71\u003c/span\u003e]. However, infographics developed without input from their intended audience can contain details which distract from the main point, or become so oversimplified that they either lose meaning or become detached from patients\u0026rsquo; lived experience [\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e, \u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e]. Throughout this project, patients told us both when we had too much detail, linguistic complexity, or jargon, and where more detail was needed. Each engagement opportunity offered tangible improvements in infographic readability through our partnership with patients and health system representatives. Notably, we were not consistently complex or simplistic; at times, we missed the mark in both directions.\u003c/p\u003e \u003cp\u003eThis project aligns with previous authors' identification of the importance of patient engagement in primary care to ensure that patients are supported in both individual-level care decisions and in system-level planning of PC services [\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e, \u003cspan additionalcitationids=\"CR73\" citationid=\"CR72\" class=\"CitationRef\"\u003e72\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR74\" class=\"CitationRef\"\u003e74\u003c/span\u003e]. Patient engagement, and policy directions anchored in public values, needs and preferences, are structural features characteristic of a high-performing PC system. Recent work, however, suggests that patient engagement is an undeveloped component of most Canadian PC reforms between 2012 and 2021, and requires significant improvement [\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e]. How we developed public-facing infographics translating data about primary care provides an example of how to meet this call for improvement. This project also responds to calls for using PC data to make policy decisions (as we helped the GHHN use PCDR data to address a local need), while explicitly assisting local decision-makers (supported by OHT-affiliated patient advisors) in public communication.\u003c/p\u003e \u003cp\u003eThis project occurred as Ontario is moving towards operating as a Learning Health System (LHS) [\u003cspan citationid=\"CR51\" class=\"CitationRef\"\u003e51\u003c/span\u003e]. A Learning Health System \u0026lsquo;brings together information from practice and research and feeds it back to teams in ways that are meaningful and useable to them. This in turn leads to practice change that improves care.\u0026rsquo; [\u003cspan citationid=\"CR75\" class=\"CitationRef\"\u003e75\u003c/span\u003e]. A LHS utilizes an iterative process and blurs the distinctions between research, care delivery, and quality improvement to accelerate the ongoing incorporation of feedback and uptake of evidence [\u003cspan citationid=\"CR51\" class=\"CitationRef\"\u003e51\u003c/span\u003e]. In LHSs, patient engagement is crucial to identify areas where health system change, or learning should occur [\u003cspan citationid=\"CR51\" class=\"CitationRef\"\u003e51\u003c/span\u003e, \u003cspan citationid=\"CR76\" class=\"CitationRef\"\u003e76\u003c/span\u003e]. In Ontario, provincial supports (resources, access to expertise) exist to promote LHS principles among OHTs.\u003c/p\u003e \u003cp\u003eThough LHS frameworks position patients and caregivers as drivers of health system change [\u003cspan citationid=\"CR51\" class=\"CitationRef\"\u003e51\u003c/span\u003e], patients report difficulties knowing how they fit into a LHS, or what roles they can play to contribute [\u003cspan citationid=\"CR77\" class=\"CitationRef\"\u003e77\u003c/span\u003e]. Relatedly, a recent review of 81 articles about LHS highlighted the absence of patient engagement in the LHS literature and called for future work in this area [\u003cspan citationid=\"CR76\" class=\"CitationRef\"\u003e76\u003c/span\u003e]. The results of Arcia and colleagues [\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e], which parallel ours, indicated that their work to co-develop infographics of patient health information aligned with the original vision for LHS, as articulated by the Institute of Medicine, which indicates that patients should be involved in developing data processes for their health information [\u003cspan citationid=\"CR74\" class=\"CitationRef\"\u003e74\u003c/span\u003e]. The results from this project confirm that patients can make important contributions to learning within health systems in both knowledge translation (e.g., the infographics developed) and by developing new knowledge (e.g., the learnings about co-producing infographics documented herein). This project, as such, offers a tangible example of how patients can contribute to a LHS. To this end, we recommend other OHTs engage their patient advisors in interpreting PCDR data, to identify areas where health system learning or change is warranted.\u003c/p\u003e \u003cp\u003eOntario has recently announced funding in support of team-based approaches to PHC congruent with LHS principles [\u003cspan citationid=\"CR78\" class=\"CitationRef\"\u003e78\u003c/span\u003e]. Two examples highlight how this could occur. In Ontario, The Alliance for Healthier Communities has articulated a vision for the province\u0026rsquo;s Community Health Centres to act as learning health systems, using electronic health record data to guide this process [\u003cspan citationid=\"CR75\" class=\"CitationRef\"\u003e75\u003c/span\u003e]. Additionally, the POPLAR provincial practice-based learning and research network (which includes data from Community Health Centres and other PC models) has integrated patient advice into their development [\u003cspan citationid=\"CR79\" class=\"CitationRef\"\u003e79\u003c/span\u003e]. Using new funding to embed patient partners within new team-based structures presents would ensure their expertise is included systematically, and act in the spirit of Learning Health System principles. Overlap already exists between LHS principles and the OHT Building Blocks, regarding using data to support ongoing improvements to healthcare quality, patient experience, and evaluation (Building Blocks 5 and 8). Aligning these provincial health system reform efforts (LHS and OHTs) with new PC structures could help to address a gap in LHS theory and practice, and ensure that health systems \u0026lsquo;learn\u0026rsquo; in ways that are important to patients and caregivers.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec14\" class=\"Section2\"\u003e \u003ch2\u003eEngagement Context\u003c/h2\u003e \u003cp\u003eThe topic of access to primary care generated mainstream media attention in Ontario as this study was conducted. Many newspaper articles, radio shows, advocacy campaigns and media interviews referenced PCDR data [\u003cspan additionalcitationids=\"CR81 CR82\" citationid=\"CR80\" class=\"CitationRef\"\u003e80\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR83\" class=\"CitationRef\"\u003e83\u003c/span\u003e]. Partner\u0026rsquo;s notable feelings of connection to this topic (as described in Meeting 8), and sense of the relevance of their involvement, occurred in this context. This concurs with the existing literature\u0026rsquo;s identification of improving the health system and self-fulfillment as two of the most common reasons patients become partners in health services research [\u003cspan citationid=\"CR84\" class=\"CitationRef\"\u003e84\u003c/span\u003e, \u003cspan citationid=\"CR85\" class=\"CitationRef\"\u003e85\u003c/span\u003e]. McCarron and colleagues [\u003cspan citationid=\"CR85\" class=\"CitationRef\"\u003e85\u003c/span\u003e] define self-fulfilment as including four components: helping others, the overall gratification received from the opportunity, meaningful connections, and a sense of purpose. These authors defined the desire to improve the health system as including both a desire to improve the culture of care, and to speak for those who cannot speak for themselves [\u003cspan citationid=\"CR85\" class=\"CitationRef\"\u003e85\u003c/span\u003e]. In Meeting 8, when project partners were asked about their involvement with this project, they described their experience as meaningful and validating and felt that the output could help others. Partners\u0026rsquo; positive perceptions of their work on this project may be explained by the project\u0026rsquo;s alignment with their original motivation to become patient partners. This is consistent with findings from a recent study in Ontario that interviewed patient advisors about their experiences and motivation for becoming involved with OHTs, which emphasized self-fulfillment [\u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e]. We therefore encourage other health system researchers to engage patients as partners on projects addressing primary care access. Doing so is ideally suited to benefitting both the patient partners and the healthcare system more generally.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec15\" class=\"Section2\"\u003e \u003ch2\u003eEngagement Process\u003c/h2\u003e \u003cp\u003eUtilizing a transformative action research approach to engaging patient and health system advisors [\u003cspan citationid=\"CR60\" class=\"CitationRef\"\u003e60\u003c/span\u003e, \u003cspan citationid=\"CR61\" class=\"CitationRef\"\u003e61\u003c/span\u003e] informed by best practice recommendations for infographic creation in public health [\u003cspan citationid=\"CR86\" class=\"CitationRef\"\u003e86\u003c/span\u003e] allowed this project to unfold efficiently and rapidly. Spending time during Meeting 2 to highlight the alignment between documented engagement practices for the GHNN [\u003cspan citationid=\"CR62\" class=\"CitationRef\"\u003e62\u003c/span\u003e] and PERC could have increased buy-in among project partners and contributed to the sense of a unified approach identified by partners in Meeting 8. Though there is a legislated mandate for OHTs like the GHNN to engage patients and communities in their development [\u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e, \u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e40\u003c/span\u003e], authors have commented on how engagement mandates can increase token forms of engagement [\u003cspan citationid=\"CR87\" class=\"CitationRef\"\u003e87\u003c/span\u003e] and result in a difference between the ritual of participation and the genuine power required to have an impact [\u003cspan citationid=\"CR88\" class=\"CitationRef\"\u003e88\u003c/span\u003e].\u003c/p\u003e \u003cp\u003ePrevious authors have outlined how participatory forms of health research can achieve impact by breaking down \u0026lsquo;hierarchies of knowledge\u0026rsquo; where power is retained by researchers who control access to data, through partnerships where power is shared [\u003cspan citationid=\"CR89\" class=\"CitationRef\"\u003e89\u003c/span\u003e, \u003cspan citationid=\"CR90\" class=\"CitationRef\"\u003e90\u003c/span\u003e]. The horizontality present between PERC and GHNN representatives throughout this process presents as a demonstration of non-hierarchical collaboration in practice. This study also presents as a demonstration of genuine engagement, using the continuum from genuine to token engagement practices articulated in 2015 by members of a Clinician-Community Advisory Group of the North American Primary Care Research Group [\u003cspan citationid=\"CR88\" class=\"CitationRef\"\u003e88\u003c/span\u003e]. In contrast to scholarship that \u0026lsquo;hides data from patients\u0026rsquo;, this study explicitly increased the transparency of publicly available primary care data. It presents a blueprint for how data can be communicated to and with patients, levelling hierarchies between patients, researchers and health system decision-makers.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec16\" class=\"Section2\"\u003e \u003ch2\u003eLimitations\u003c/h2\u003e \u003cp\u003e While this project benefitted from its orientation to transformative action research principles, there are aspects of this participatory methodology we did not implement. We did not facilitate workshops in communities to share results and increase community ownership of the data. We also recognize that best practices in evaluating patient and public involvement in research include an economic assessment of engagement processes and impacts; doing so, however, was unfortunately outside the scope of this 1-year grant.\u003c/p\u003e \u003c/div\u003e"},{"header":"Conclusion","content":"\u003cp\u003ePatient engagement in research is becoming widespread, but co-developing knowledge products with patient and health system partners is less common. Co-developed infographics can prevent oversimplification and unnecessary complexity and ensure that visuals are understandable by the target population(s). Health services research benefits from the diversity of perspectives possible when knowledge users, researchers, and most importantly patient and community advisors are brought together. Addressing current health system challenges will require this diversity of input if the Quintuple Aim is to be met.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cp\u003eAHRQ- Applied Health Research Question\u003c/p\u003e\n\u003cp\u003eEHR- Electronic Health Record\u003c/p\u003e\n\u003cp\u003eGHHN-\u0026nbsp;The Greater Hamilton Health Network\u0026nbsp;\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eGRIPP2- Guidance for Reporting Involvement of Patients and the Public\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eINSPIRE-PHC- Innovations Strengthening Primary Health Care Through Research\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eLHS- Learning Health System\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eOHT- Ontario Health Team\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eON- Ontario\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eOSSU- Ontario SPOR (Strategy for Patient-Oriented Research) Support Unit\u0026nbsp;\u003c/p\u003e\n\u003cp\u003ePCDR- Primary Care Data Reports\u0026nbsp;\u003c/p\u003e\n\u003cp\u003ePERC- Patient Expertise in Research Collaboration\u0026nbsp;\u003c/p\u003e\n\u003cp\u003ePC- Primary Care\u0026nbsp;\u003c/p\u003e\n\u003cp\u003ePHC- Primary Health Care\u0026nbsp;\u003c/p\u003e\n\u003cp\u003ePPI- Patient and Public Involvement\u003c/p\u003e\n\u003cp\u003eSPOR- Strategy for Patient-Oriented Research\u0026nbsp;\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eEthical Approval and Consent to participate:\u003c/strong\u003e This research project was approved by the Hamilton Integrated Research Ethics Board at McMaster University in Ontario, Canada under Project #13199. \u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent for publication: \u003c/strong\u003eThe authors affirm all that project partners consented to the publication of data collected during this project.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAvailability of data and materials\u003c/strong\u003e: The data that support the findings of this study are available from the Ontario Community Health Profiles partnership with the identifier: https://www.ontariohealthprofiles.ca/ontarioHealthTeam.php. \u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interests: \u003c/strong\u003eThe authors have no relevant financial or non-financial interests to disclose.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding: \u003c/strong\u003eThis study received funding from the Ontario Ministry of Health through an Innovations Strengthening Primary Health Care Through Research (INSPIRE-PHC) Applied Health Research Question grant awarded to Drs MacNeil and Ganann. This study was supported by funding from Canadian Institutes of Health Research and the Ontario SPOR SUPPORT Unit awarded to Dr Ganann. The funders had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication. Disclaimer: The analyses, conclusions, opinions, and statements expressed herein are solely those of the authors and do not reflect those of the funding or data sources; no endorsement is intended or should be inferred.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors\u0026apos; contributions: \u003c/strong\u003eConceptualization: MMa, RGa, VR, JBa, JBo, CC, EF, MH, CL, MMc \u0026amp; SP. Methodology: MMa, AT, RGa, VR, JBa, JBo, CC, CL, AG, MH, MJ, MMc, SP, PS, JS, JV, MW, \u0026amp; SW. Software, validation, formal analysis, resources, data curation: EF, MG \u0026amp; RGl. Writing- original draft: MMa, AT \u0026amp; RGa. All authors contributed to visualization of the data and reviewed the manuscript.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAcknowledgements:\u003c/strong\u003e We would like to thank patient partners Angela Frisina and Bernice King for their contributions to the design of this project and for visualizing and interpreting project results. We thank Hilary Nolan Haupt and Michelle Sharp for their project administration and graphic design support.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eCanadian Institutes of Health Research (CIHR), \u003cem\u003eStrategy for patient-oriented research: patient engagement framework\u003c/em\u003e. 2014.\u003c/li\u003e\n\u003cli\u003eLauzon-Schnittka, J., et al., \u003cem\u003eThe experience of patient partners in research: a qualitative systematic review and thematic synthesis.\u003c/em\u003e Res Involv Engagem, 2022. \u003cstrong\u003e8\u003c/strong\u003e(1).\u003c/li\u003e\n\u003cli\u003eAbelson, J., et al., \u003cem\u003eUnderstanding patient partnership in health systems: lessons from the Canadian patient partner survey.\u003c/em\u003e BMJ Open, 2022. \u003cstrong\u003e12\u003c/strong\u003e(9): p. e061465.\u003c/li\u003e\n\u003cli\u003eDomecq, J.P., et al., \u003cem\u003ePatient engagement in research: a systematic review.\u003c/em\u003e BMC Health Serv Res, 2014. \u003cstrong\u003e14\u003c/strong\u003e(1): p. 89.\u003c/li\u003e\n\u003cli\u003eHamilton, C.B., et al., \u003cem\u003eAn empirically based conceptual framework for fostering meaningful patient engagement in research.\u003c/em\u003e Health Expect, 2018. \u003cstrong\u003e21\u003c/strong\u003e(1): p. 396-406.\u003c/li\u003e\n\u003cli\u003eJaakkimainen, L., et al., \u003cem\u003e24 hours in Ontario\u0026rsquo;s healthcare system: the ecology of healthcare services [abstract]\u003c/em\u003e, in \u003cem\u003eNorth American Primary Care Research Group Annual Meeting: 2023\u003c/em\u003e. 2023: San Francisco, CA.\u003c/li\u003e\n\u003cli\u003eArchibald, M., et al., \u003cem\u003eCo-designing evidence-based videos in health care: a case exemplar of developing creative knowledge translation \u0026ldquo;evidence-experience\u0026rdquo; resources.\u003c/em\u003e Int J Qual Methods, 2021. \u003cstrong\u003e20\u003c/strong\u003e: p. 16094069211019623.\u003c/li\u003e\n\u003cli\u003eArcia, A., M. 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Gent, \u003cem\u003e7 G.R.A.P.H.I.C principles of public health infographic design\u003c/em\u003e, P.H. England, Editor. 2015, University of Leeds: Leeds, UK.\u003c/li\u003e\n\u003cli\u003eKiran, T., J. Tepper, and F. Gavin, \u003cem\u003eWorking with patients to improve care\u003c/em\u003e, in \u003cem\u003eCMAJ\u003c/em\u003e. 2020. p. E125-127.\u003c/li\u003e\n\u003cli\u003eHahn, D.L., et al., \u003cem\u003eTokenism in patient engagement.\u003c/em\u003e Fam Pract, 2017. \u003cstrong\u003e34\u003c/strong\u003e(3): p. 290-295.\u003c/li\u003e\n\u003cli\u003eWallerstein, N. and B. Duran, \u003cem\u003eCommunity-based participatory research contributions to intervention research: the intersection of science and practice to improve health equity.\u003c/em\u003e Am J Public Health, 2010. \u003cstrong\u003e100\u003c/strong\u003e(S1): p. S40-6.\u003c/li\u003e\n\u003cli\u003ePratt, B., \u003cem\u003eWhat should engagement in health research look like? Perspectives from people with lived experience, members of the public, and engagement managers.\u003c/em\u003e Camb Q Healthc Ethics, 2022. \u003cstrong\u003e31\u003c/strong\u003e(2): p. 263-274.\u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"research-involvement-and-engagement","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"riae","sideBox":"Learn more about [Research Involvement and Engagement](http://researchinvolvement.biomedcentral.com/)","snPcode":"40900","submissionUrl":"https://submission.nature.com/new-submission/40900/3","title":"Research Involvement and Engagement","twitterHandle":"@MedicalEvidence","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"BMC/SO AJ","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"patient engagement, patient and public involvement, patient partner, community-based participatory research, primary care research, primary health care, health services research, health communication, big data","lastPublishedDoi":"10.21203/rs.3.rs-4946543/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-4946543/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003eBackground: \u003c/strong\u003eHaving a primary care provider is associated with better care experiences and lower care costs. In 2021, INSPIRE-PHC released Primary Care Data Reports (PCDR) - publicly available summaries of administrative billing data about how populations in each of Ontario’s 60 health teams engage with primary care. Given the characterization of Canadian primary care systems as ‘in crisis’, publicly available data about primary care at the regional level presented a significant opportunity for knowledge mobilization. An understandable resource could ground the public conversation about primary care access in data. Recognizing the role that lived experience plays in ensuring the public understands research findings, a partnership between patient advisors, Ontario Health Team (OHT) representatives, researchers, and trainees was established to co-produce public-facing infographics of PCDR data.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethods\u003c/strong\u003e: Evidence-based guidelines for public health infographic creation and elements of transformative action research guided a six-meeting process to engage up to 14 patient advisors, three OHT staff and two primary care trainees. Patient advisors were affiliated with a provincial patient-oriented primary health care research group or a Hamilton-based OHT. Ninety-minute meetings were conducted virtually, and notes were shared with attendees to ensure they accurately reflected the conversation. Two consultations with OHT-affiliated primary care providers provided direction and ensured project outputs aligned with local priorities.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults\u003c/strong\u003e: Project partners shared feedback on draft infographics, audience identification, priority elements from PCDR to include in the infographics, and aesthetic features (e.g., headings, colour scheme, charts). Project partners felt the most important metrics to convey to the public were those that simultaneously reinforced the benefits of primary care on individual health outcomes and health system costs.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusions:\u003c/strong\u003e Patient engagement in research is becoming widespread, but co-developing knowledge products with patient and health system partners is less common. Our approach to engaging patients prevented both oversimplification and unnecessary complexity in a public-facing visual about attachment to primary care.\u003c/p\u003e","manuscriptTitle":" Am I attached? 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