Carley Ouellette, Dawn Richards, Christine Chambers 0000-0002-7138-916X , and Kathryn Birnie 0000-0002-8223-8834
CONTACT Kathryn Birnie
[email protected]
© 2019 The Author(s). Published with license by Taylor & Francis Group, LLC.
This is an Open Access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/4.0/ ), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
Symposium Chair : Carley Ouellette, BScN RN, McMaster University, Nursing, Hamilton, Ontario, Canada;
[email protected] ; @carleyouellette
Symposium Abstract : Public or patient engagement in research is “…research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’, or ‘for’ them” (INVOLVE, 2018). Patient engagement represents a shift from the traditional view of patients as research participants to one that empowers patients, otherwise identified as “people with lived experience”, as partners and co-builders on research teams. Evidence suggests that engaging patients as collaborators enhances the quality, appropriateness, and relevance across stages of the research process. This includes increased study enrolment and decreased attrition, improved data collection tools, more effective dissemination and implementation of study findings, better researcher-community rapport, and closer alignment of research objectives to patient-identified priorities. However, challenges to greater uptake of patient engagement identified by researchers include difficulties identifying representative and appropriate patients, uncertainty about the scope of patients’ roles, perceived lack of evidence regarding the impact of patient engagement, and the need for researcher education and culture change as a prerequisite. Thus, there is a need for continual knowledge generation and reflective practice regarding patient engagement in health research. The objective of this symposium is to illustrate diverse, meaningful, and active partnership of people with lived experience with pain and their families, in pain research governance, priority setting, research conduct, and knowledge translation. This symposium draws from multiple expert perspectives, including two individuals with lived experience with pain and extensive involvement with patient engagement (symposium chair and first speaker), as well as two researchers leading national patient engagement practice in pain research (speakers).
Speaker 1 : Dawn Richards, PhD, Chronic Pain Network, McMaster University, Hamilton, Ontario, Canada,
[email protected] , @TO_dpr
Speaker 1 Abstract : People living with chronic pain bring a unique perspective to research. Living with a condition 24 hours a day, 7 days a week, provides a perspective of urgency, relevancy, and resilience. The SPOR Chronic Pain Network (CPN) has harnessed the capacity, passion, and perspective of individuals living with chronic pain throughout its governance, operations, and research activities. These community efforts began prior to CPN’s funding by CIHR: in parallel with its grant application efforts, extensive work was undertaken to uncover research priorities for those living with chronic pain. CPN now has engaged approximately 30 partners with lived experience who play roles in its governance, committee membership, research projects, and in helping lead patient engagement and related training efforts (with ebb and flow to accommodate for health and life reasons). With so few similar models to draw from in the research space, CPN’s efforts have been based on guidance available in the literature (published and grey), best practice examples, involving people who have experience in patient engagement in other areas, good intentions and trial and error. Experiences will be shared from the CPN about the initial approach to integrate the lived experience, continued efforts throughout its operations to date, and insights that continue to evolve as a result of evaluating and examining current patient engagement efforts. The presentation will be delivered by an individual whose insights in to patient engagement and research are due to her own lived experience with pain and training as a basic scientist.
Speaker 2 : Christine Chambers, PhD, Department of Pediatrics and Psychology & Neuroscience, Dalhousie University, Halifax, NS,
[email protected] , @DrCChambers
Speaker 2 Abstract : The failure to meaningfully and actively engage patients in health research and care has been identified as a barrier to uptake of research findings and improvements in care delivery. While the arguments for engaging patients in research are compelling (e.g., improved research quality and relevance, reduced research waste etc.), there is limited empirical research available to guide its practice or theoretical basis. Using two successful social media initiatives as case studies, this session will evaluate the experience of patient as research partners. Dr. Christine Chambers will provide an overview of the #ItDoesntHaveToHurt and #KidsCancerPain social media initiatives and the role that patient partners had in guiding project design, implementation, and evaluation. Dr. Chambers will present data from 14 patient partners (93% parents, 67% mothers, 56% aged 40–49) who completed a structured interview at the end of each initiative. Survey results indicated that parents felt listened to (100%), that meetings respected their schedule (83%), and that they were able to share their personal experience as a patient as part of the team (94%). On a scale from 1 to 7, patient reported feeling comfortable with the project (M = 6.22, SD = .81) and that their comments impacted project decision making (M = 5.76, SD = 1.56). While common lessons learned emerged in both groups (e.g., the power of partnership and collaboration), differences emerged in suggestions for improvement, which will be explored in this presentation. This investigation offers novel empirical data on the value of engaging patient partners in pain research.
Speaker 3 : Kathryn Birnie, PhD; Lawrence S. Bloomberg Faculty of Nursing, University of Toronto & Child Health Evaluative Sciences, The Hospital for Sick Children, Toronto, Ontario, Canada;
[email protected] ; @katebirnie
Speaker 3 Abstract : This presentation will outline co-produced activities from a Canadian patient engagement project involving people with lived experience with pediatric pain, parents, researchers, healthcare providers, and advocacy groups. Patient and parent partner input and expertise are sought throughout project activities from design to dissemination.
Outcomes include (1) a patient engagement registry linking patients/families with researchers to partner on research teams; and (2) a top 10 list of research priorities identified by patients, families, and healthcare providers using an internationally established partnership priority setting process (James Lind Alliance). First steps of the #PartneringForPain priority setting process are completed, including a national survey with 215 respondents from across Canada: 40% people with lived experience with pediatric chronic pain, 26% family members, and 34% healthcare providers. From the over 530 ideas submitted, priorities related to health systems issues (e.g., access and standardization of care, transition to adult services,), school (e.g., education for personnel, accommodations), healthcare providers’ beliefs and behaviours, public and healthcare provider education and awareness, social and peer support, chronic pain etiology, assessment/diagnosis, and prognosis, as well as specific treatment modalities (e.g., cannabis). Ongoing next steps include an online interim priority setting survey and final priority setting workshop (held in November 2018). The final top 10 patient- and parent-identified research priorities will be presented. This talk will offer learning from our own experience brokering and managing patient-researcher partnerships, as well as identifying benefits and challenges still to be addressed. Quotes from patient and parent partners about their experience will be shared.
Learning Objective 1 : To understand and critically view how patient partners’ roles were established and are evolving in a national research network.
Learning Objective 2 : To understand the experience of parent partners involved in social media initiatives and ways to improve it in the future.
Learning Objective 3 : To see meaningful integration of patient and parent partners as members of a research team, and empowerment of patient and parent voices to identify pain research priorities.