Co-creation of a qualitative fertility research study to understand waiting time experiences through patient engagement.

The research team comprised three patient partners (S.T., J.T., & K.P.) and five additional project team members (M.H., J.C., L.T., E.M., & K.W). The patient partners were recruited through a purposive sampling strategy; two patient partners, having participated in previous fertility projects and activities with the research team, were specifically contacted by the research team due to the depth of their lived experiences navigating the fertility service system; and one patient partner was contacted by the research team due to their involvement with local infertility support groups and resources. All patient partners consented to share their experiences while on the waitlist for fertility services. Additionally, the project team consisted of undergraduate and graduate students and faculty members with extensive expertise in exercise science, fertility, obesity, physical activity and health promotion, and physical literacy. Their combined knowledge guarantees thorough adherence to research protocols. This research study was conducted in Newfoundland and Labrador (NL), a Canadian province. In this province, only one clinic offers endocrinology and infertility services, NL Fertility Services (NLFS). The research team worked closely with healthcare providers at NLFS, which serves the entire population across a large and rural area. Patient engagement occurred through one-on-one interactions (e.g., with an individual patient partner) and group sessions (e.g., with multiple patient partners). Engagement activities took place from July 2023 to March 2024, involving various interactions among the team (Fig.  1 ). The first author, M.H., initiated the patient engagement sessions, delivering an overview of the objectives of the session, providing background information and updates on the research activities and facilitating discussion between members in the session. Three sessions were conducted: one virtual and two in-person. Additionally, a fertility research retreat was held to discuss the study methodology with patient partners. Of the three patient partners, two participated in group sessions (one virtual and one in-person), while one engaged solely in one-on-one in-person interactions due to their late recruitment. To ensure active commitment, engagement, and collaboration throughout the patient engagement process, one member of the research team (M.H.) regularly communicated with patient partners via email, to keep the patient partners abreast of relevant study developments, such as changes made to the study based on their feedback, and upcoming opportunities to engage with the research team. This member of the research team (M.H.) also kept an active record of the patient engagement process, including the engagement and collaboration amongst the team and the time commitments at each stage of the project development. The timeline depicts a continuous engagement with patient partners, highlighting the consistent communication and feedback attained throughout the research project. To ensure that patient partners felt at ease with the team and that their input was valued, open dialogue and receptivity to receiving feedback from the patient partners was endorsed. Further, patient partners were made aware that no suggestion is insignificant. In line with the guidelines for patient-oriented research, throughout the patient engagement process, patient partners were considered members of the research team, and are referred to as such throughout this manuscript. Previous research has reported many barriers to patient engagement, leading to the need to develop tools and resources that support and enable patients’ engagement in research [ 19 ]. The International Association for Public Participation framework (IAP2) was used to inform public participation throughout the project. The IAP2 framework defines and outlines three pillars of public participation: the spectrum of public participation, the core values, and the code of ethics [ 20 ]. We used the IPA2 framework to create a patient engagement plan aligned with the core values and code of ethics of public participation and define the patient partners’ levels of engagement (i.e., inform, consult, involve, collaborate, and empower) at various research stages [ 20 ]. During the engagement planning, patient partners were informed of the research activities for the study, which included: (1) development of the grant proposal, (2) preparation for execution of the study, (3) data collection, (4) analysing and interpreting data, (5) dissemination of findings, (6) implementation of findings, and (7) monitoring and evaluation. For each research activity, the patient partners determined the level of engagement they wished to contribute to each activity through collaboration with the research team. The Public and Patient Engagement Evaluation Tool (PPEET) tool was used to evaluate the execution of the patient engagement plan [ 21 ]. The PPEET explored the impact of patient engagement at numerous levels and identified any enablers and barriers in the research process [ 22 ]. The PPEET tool includes three separate questionnaires: (1) participant, (2) project, and (3) organisation. For this study, patient partners completed the participant questionnaire, evaluating one-time and long-term public and patient engagements. To interpret the results from the PPEET questionnaires, the data was presented using a 1-100% stacked bar graph, and recurring themes among patients were qualitatively identified. The Public and Patient Engagement Collaborative template, created by McMaster University, was used to take meeting minutes [ 23 ]. The meeting minutes template included the following components: (1) describe the interaction (i.e., what was the activity and who participated), (2) what were the goals of the interaction, (3) what were the main outcomes of the interaction, (4) what did the patient partner contribute to the meeting, (5) how will the patient partners contributions be used going forward, (6) rate how much impact we think the patient partners feedback had on the meeting discussions, and (7) what are the next steps for this work. The researchers reviewed the data collected using this template, focusing specifically on the main outcomes of the interaction and the contributions made by the patient partner during the meeting. M.H. summarized high-level feedback from the patient partners, and revisions to the proposed research study were made based on a consensus reached by the research team. In the engagement sessions, all contributions from the patient partners were carefully considered and incorporated into the research project whenever possible. In the event of a disagreement or differing opinions, the approach outlined in the University of Toronto’s Patient Engagement Toolbox was followed. This framework recommends three potential strategies: (1) forming a task force to further investigate the issue, (2) seeking input from other groups (e.g., another committee or a patient/family advisory group), or (3) postponing the decision for discussion at a future meeting [ 24 ]. Fig. 1 Patient engagement timeline. This figure displays the points at which the patient partners participated, as well as when they were contacted by the research team. In addition, when the research activities (RA) occurred or will occur, in relation to the patient engagement timeline, are presented. * RA1: development of the grant proposal, RA2: preparation for execution of the study, RA3: data collection, RA4: analysing and interpreting data, RA5: dissemination of findings, RA6: implementation of findings, and RA7: monitoring and evaluation Patient engagement timeline. This figure displays the points at which the patient partners participated, as well as when they were contacted by the research team. In addition, when the research activities (RA) occurred or will occur, in relation to the patient engagement timeline, are presented. * RA1: development of the grant proposal, RA2: preparation for execution of the study, RA3: data collection, RA4: analysing and interpreting data, RA5: dissemination of findings, RA6: implementation of findings, and RA7: monitoring and evaluation

A comfort level was noted that allowed the participants to be open about their ideas, views, and experiences. One respondent noted, “I felt seen, heard, validated, and understood, and that my lived experience was appreciated and valued.” Another reported, “This team’s collaborative approach was appreciated and valued.” This resulted in feedback based on a feeling that the research team valued the information provided and that they had provided information that would be used to help others seeking fertility assistance and potentially improve fertility services in the province. Fig. 3 PPEET (Module A) planning the engagement component of your project. This chart illustrates the responses obtained from the Likert scale of the PPEET, representing participants’ feedback regarding the planning of the engagement component PPEET (Module A) planning the engagement component of your project. This chart illustrates the responses obtained from the Likert scale of the PPEET, representing participants’ feedback regarding the planning of the engagement component After completing Module A of the PPEET, which focused on planning the engagement component of the project, results indicated that participants responded “agree” to nine out of the ten questions in the questionnaire (Fig.  3 ). These results reflected a positive understanding of their engagement role and the effectiveness of the planning process. When questioned about their role in the engagement component, they stated, “As a patient partner, my role is to bring a personal and relatable tone to the project. I am also able to provide emotional insight as someone who has been through the fertility waitlist process.” As a result, they demonstrated a thorough understanding of their role and agreed on the integrity of the design process. Fig. 4 PPEET - Module A. One-time engagement activities. This chart illustrates the responses obtained from the Likert scale of the PPEET, representing participants’ feedback regarding their participation in the research activity PPEET - Module A. One-time engagement activities. This chart illustrates the responses obtained from the Likert scale of the PPEET, representing participants’ feedback regarding their participation in the research activity The responses from the questionnaire indicated the participants’ satisfaction with their engagement. Eleven of the thirteen questions were answered with “agree,” while the remaining two received “strongly agree” responses (Fig.  4 ). It was stated that they “could truly feel as though my opinions were valid and taken into consideration.” These themes of understanding and empowerment continued throughout the questionnaire as they felt as if the “conversation flowed freely” and that the research team was “very personable and understanding.” One concern was the need to include “less jargon” as it is “sometimes hard to follow conversation regarding project phases.” The research team has considered this statement and adjusted their approach.

Exploring Patients’ Experiences Accessing Fertility Services and Information: A Journey of Advocacy and Empowerment (November 1, 2023 to December 31, 2024). This project activity includes analyzing data that has been collected through semi-structured interviews to obtain information with regard to the experiences, stories, and thoughts about accessing reproductive health information and services for females awaiting fertility services at the Newfoundland and Labrador Fertility Clinic. This stage will ensure that common themes and findings are understood by all members of the research team. Together, we will define core elements that arose throughout the data collection to ensure the credibility of results. This collaborative learning environment will benefit all members of the research team by ensuring mutual understanding among the team members and by exploring the needs and concerns for further reproductive health education. Patient engagement during this project activity will empower its members by providing them the opportunity to give their insights into the topic area. It also gives them decision-making power in terms of how the results will be translated for different knowledge users. This document will outline the third stage for patient engagement, analyzing and interpreting the data. Additional information on the various levels of engagement opportunities for each research activity is listed below. This document comprises a summary of the commitment and responsibilities of the team members (e.g., patient partners, researchers, and research staff) at each level of engagement. It also includes estimations for the: number of meetings required . amount of patient partner time that will be required . amount of research time required . training patient partners will require . other resources the team will require . number of meetings required . amount of patient partner time that will be required . amount of research time required . training patient partners will require . other resources the team will require . It is important to note that the estimates provided are subject to change due to unforeseen circumstances, restrictions to team resources, and/or other reasons that may arise. This activity will involve a formal meeting with all members of the research team to discuss the outcomes of the data that has been collected through semi-structured interviews. Collaboration with patients at this stage will address relevant health concerns and will contribute to improving the quality of care for this demographic. They can assist the researchers in critically appraising the data collected to reduce researcher bias. This opportunity for patient involvement can offer valuable insight into the methodology used to determine if any modifications should be made. Engaging patient partners will facilitate discussions within the research team to develop common themes from the data collected. This will increase the validity of the results by ensuring that there is consistency in the interpretations of the data throughout all members of the research team. Level 1: Inform Meetings required Patient time Researcher time Training required Responsible team member 0 Patient-determined - None required PE coordinator Level 1: Inform Review the general themes identified by the research team within 1–2 weeks of receiving the documentation. Appraise the practicality of the research plan and ensure that the materials provided are feasible. Review the general themes identified by the research team within 1–2 weeks of receiving the documentation. Appraise the practicality of the research plan and ensure that the materials provided are feasible. Level 2: Consult Meetings required Patient time Researcher time Training required Responsible team member 1 2 h 2 h None required All Level 2: Consult Analyze the data, identify themes from interviews or focus groups to make sense of the findings within 1–2 weeks of receiving them. Attend a meeting to critically discuss the findings with the research team. Provide recommendations for how they understand or interpret the findings. Identify the key messages for patient, public, or community audiences. Co-develop products for sharing the key messages (i.e., infographics, whiteboard videos, newsletters). Consult on the interpretation of our findings to ensure consistency of themes developed between team members. Analyze the data, identify themes from interviews or focus groups to make sense of the findings within 1–2 weeks of receiving them. Attend a meeting to critically discuss the findings with the research team. Provide recommendations for how they understand or interpret the findings. Identify the key messages for patient, public, or community audiences. Co-develop products for sharing the key messages (i.e., infographics, whiteboard videos, newsletters). Consult on the interpretation of our findings to ensure consistency of themes developed between team members.

Infertility is the inability to reproduce due to failure to establish a clinical pregnancy after 12 months of regular and unprotected sexual intercourse [ 1 ]. More than 186 million people experience infertility, which is estimated to affect between 8 and 12% of couples who are of reproductive age (i.e., 18–40) [ 2 , 3 ]. Despite the significant impact on couples, women impacted by infertility are reluctant to share their experiences due to perceived stigma [ 4 ]. Unfortunately, research involving stigmatized patient populations, such as those experiencing infertility [ 5 ], is challenging due to difficulty in recruiting patients [ 6 ]. Engaging with patients may help improve study outcomes, such as recruitment, however, many patients involved in research studies report feeling unappreciated [ 7 ]. Similarly, understanding medical conditions experienced by females has lagged behind those experienced by males [ 8 ]. Thus, there is a need to improve the patient engagement processes in patient research, especially among female patients in the field of infertility. The waiting period for fertility services presents an opportunity to provide preconception education and counseling to eager couples. Unfortunately, several factors affect the experience of individuals waiting to receive fertility care. For example, in Canada, patients diagnosed with infertility have reported feelings of hopelessness and frustration when placed on a waitlist for publicly funded IVF treatment, with minimal resources available to help them navigate their care [ 9 ]. Moreover, physicians and nurses report having minimal time, training and resources to evaluate and counsel patients on modifiable risk factors (e.g., diet and physical inactivity) known to positively influence fertility-related outcomes [ 10 ]. A lack of appropriate lifestyle counselling is associated with several adverse health outcomes, such as medication nonadherence, mistrust of healthcare providers, and avoidance of medical care [ 11 ]. These outcomes are further amplified by the increasing prevalence of patients with a diagnosis of infertility and obesity (e.g., obese women are three times more likely to have infertility) [ 12 ]. Unfortunately, women who are overweight or obese frequently experience weight-related bias and discrimination within the reproductive healthcare system and report poorer health outcomes and experiences [ 11 ]. Feelings of perceived discrimination and prejudice, as well as the lack of appropriate lifestyle counselling among patients awaiting fertility care, demonstrate a need to better understand the experience of accessing fertility services from a patient-centred perspective. Thus, there is a need to develop a research study aimed at understanding the experiences of patients waiting for fertility services with a focus on preconception education and counselling. Involving patients directly in the research process is gaining value in health and social contexts [ 13 ]. Patient-oriented research (POR) is an emerging approach where patients (termed patient partners) take on a more collaborative role within the research process. Patient partners may help determine the research priorities, conduct and guide the research, evaluate outcomes that are important to the patients, and advocate for using the research findings in clinical practice [ 14 ]. The POR approach provides patient partners with various engagement opportunities according to their preferences and interests. Patient partners can choose low engagement, such as the research team keeping the patient partner abreast of information collected, to high engagement, where the patient partner can provide meaningful input into the decision-making process [ 14 ]. Implementing the POR methodology can have many benefits, such as reducing researchers’ unconscious biases and increasing the empowerment of patients through meaningful collaboration [ 15 ]. The use of POR methodology helps to ensure that research aims offer mutually beneficial outcomes for both the participants and the researchers. Patient participation in health research has been recognized as critical to improving the quality of research, relevance to medical needs, and advancements in how findings are applied within clinical practice [ 16 ]. While there has been an increase in the number of fertility patient advocacy groups, fertility research needs more significant patient empowerment and engagement to address patient priorities and care. Further, exploration of effective engagement methods and how these effects can be measured for patients with lived experiences of infertility is warranted. Recently, Howard et al. conducted a qualitative pilot study using principles of POR to develop an evidence-based website educating patients on the associations between sex, pain, and endometriosis [ 17 ]. Despite endometriosis being a common disease among women, those affected face barriers to accessing quality medical care as a result of the social stigma that exists when addressing female sexuality [ 17 ]. In this study, components of POR created empowerment and contributed to emotional healing for those affected [ 17 ]. Patient engagement and POR approaches have been underutilised in reproductive health research. Patient engagement refers to patients (defined as those with lived experience of a health condition) meaningfully and actively collaborating with the processes of health governance, health priority-setting, health research, and health knowledge dissemination [ 18 ]. POR pertains to a field of health research wherein patients are engaged as partners within the research team to create relevant research that aligns with patient priorities and improves patient and health system outcomes and practices [ 18 ]. To address the lack of patient engagement and POR approaches in reproductive health research, we used POR methodologies to develop a qualitative research study collaboratively focused on understanding the waiting experiences of patients seeking fertility services with individuals who have lived experience of infertility. This study outlines the patient engagement plan, POR approaches, and patient evaluation used in the research development process.

This study used patient engagement and POR approaches to collaboratively create a qualitative research study design to explore patients’ experiences while waiting for fertility services. Patient engagement led to significant changes to the research methodology to enhance inclusivity, sensitivity, and effectiveness. Prioritizing patient partners’ perspectives enabled us to create a study that was more relevant to the patient population and more sensitive to the needs and goals of fertility patients. In conclusion, acknowledging and representing the underrepresented patient population of persons with infertility through POR may increase accessible research and ultimately enhance the experience of women and non-binary individuals on the waitlist for fertility services.

Using POR methodologies, this study collaborated with patient partners to design a qualitative research study aimed at exploring fertility patients’ experiences seeking fertility services. Patient engagement initiatives significantly influenced our research trajectory by modifying our aims and methodology. Collaborating with our patient partners, the research team shifted the focus of the proposed qualitative study from exploring persons’ understanding and awareness of fertility risk factors to investigating how fertility patients can feel empowered in their reproductive health journey. By implementing POR, the outcome of this patient engagement study is that our future qualitative research study will address relevant knowledge gaps for persons with lived experience with a proposed methodology that is accessible and sensitive to our patient population. The primary objective of this study was to create research that could change healthcare policies. To do this, our research team collaborated with patient partners to comprehensively understand their lived experiences and ensure that relevant population-specific needs and priorities are addressed [ 24 ]. Rather than solely focusing on previously published work or established clinical practices, we focused on understanding our patient partners’ experiences. The goal of focusing on the patient partners’ experience was to co-create a qualitative study that aligned with the visions of the patient population while addressing the needs of the fertility patients and the broader healthcare system. Experiencing limited services or barriers to accessing fertility services was a dominant finding that emerged from work completed by Maxwell and colleagues in the province of NL [ 25 ]. Our discussion groups with patient partners revealed a continued dissatisfaction with a lack and delay of available services for persons waiting for fertility services in NL. Having to wait for health services is associated with poorer health outcomes and distinct psychological symptoms [ 26 ]. For instance, in a scoping review of the psychological burden of waiting for health services delayed by the COVID-19 pandemic, the authors found that having to wait for healthcare was often associated with impacts on mental health, including symptoms of clinical depression and anxiety, reduced quality of life, and feelings of uncertainty, restriction (being unable to perform a desired task due to inability or pain), and exhaustion [ 26 ]. Similarly, in another study of the experience of waiting for mental health services, authors found that having to wait for mental healthcare was associated with the worsening of mental health and symptoms of mental illness, which lead to patients having to seek alternative interventions and support and develop coping strategies [ 27 ]. By concentrating on the lived experiences of our patient partners, we recognized that the concept of modifiable risk factors may be associated with blame among fertility patients. Similarly, by engaging with our patient partners, we learned that despite requiring and availing of fertility services, the LGBTQIA + and queer communities are largely excluded from reproductive health research. For example, LGBTQIA + individuals are frequently under-represented in fertility-related research, which contributes to a shortage of relevant information and appropriate services for this population [ 28 ]. Similarly, prevailing fertility-related definitions and policies are largely exclusionary, framing infertility from a heteronormative perspective and reinforcing infertility as a condition only experienced by heterosexual couples [ 28 ]. As such, based on engagements with our patient partners, we made several efforts to be more inclusive of the LGBTQIA + community in our project, including using more inclusionary language (for example, saying ‘people of the female sex who identify as either female or non-binary’ as opposed to “women experiencing infertility”) and opening our recruitment criteria to include non-binary individuals as well as females. These findings, which may not have arisen from focusing solely on the existing literature, enabled us to gain a deeper understanding of the phenomenon of infertility in the province of NL and enabled us to create a study that was more sensitive, accessible, and relevant to the target patient population. Prioritising patients’ journeys has been shown to facilitate the development of improved and effective healthcare services, ultimately enhancing the quality of care and information available to patients [ 29 ]. Using a patient engagement approach to inform research in fertility care aligns with a patient-centered care model, which emphasizes placing the patient at the center of clinical decision-making [ 30 ]. This approach has been studied and applied in both fertility and maternal care models. Patient-centered infertility care is a healthcare model developed through patient engagement. This model encompasses ten dimensions: provision of information, competence of the clinic and staff, coordination and integration, accessibility, continuity and transition, physical comfort, staff attitude and relationships, communication, patient involvement, and privacy and emotional support [ 31 , 32 ]. In a patient-centred qualitative study of infertility patients’ experiences, participants identified several areas where services could be changed (e.g., improved communication and appointment coordination) to improve fertility care [ 31 ]. Similarly, in a study of the challenges experienced by those with chronic illness, Mirzaei and colleagues found that patients had valuable input into delivering healthcare services and expressed a desire to be involved in health policy and decision-making processes [ 33 ]. Delaney summarizes that patient-centred practice is an invaluable component of healthcare delivery, and when complemented with evidence-based medicine, it contributes to improved health and healthcare system outcomes [ 34 ]. By engaging with patient partners in our study, we found that fertility patients in NL feel dissatisfied with the lack and delay of current fertility services. Moreover, our patient partners highlighted the potential exclusionary nature of pre-existing fertility research and policies, especially among the LGBTQIA + community. Based on these findings, and the capacity for patients to facilitate the development of improved healthcare services and policies, we suggest some recommendations to improve the fertility services and policies in NL. Due to patient partners’ feelings of dissatisfaction during the waiting period for fertility care, and the pre-established psychological toll of waiting for healthcare, we recommend providing more support and information to patients while they await fertility care in NL. In this way, patients can be better informed of the existing fertility services and practices, and can seek additional support or care as necessary. Similarly, based on the prevailing exclusion of LGBTQIA + community from fertility research and services–a finding that arose in both the current study and previous literature–we recommend that current fertility policies and practices be reassessed and updated as needed to shift away from the conventional heteronormative perspective and be more inclusive of traditionally under-represented groups, such as the LGBTQIA + community. In line with recommendations from researchers such as Larson and colleagues [ 35 ], the final component of the project was to evaluate patient partners’ satisfaction with patient engagement and POR approaches. Patient partners expressed feelings of contentment and empowerment when actively involved in the decision-making process related to their health and well-being. The reflection of this was evident by the high satisfaction response rates collected from the PPEET and through focus-group discussions in which patient partners expressed that they felt “heard” and “seen” throughout the process. Consistent with previous research [ 36 ], we found that engaging patient partners in health research and care fosters a sense of satisfaction and autonomy while contributing to improved health and well-being. Incorporating patient engagement through one-on-one interactions and group discussions facilitated an open dialogue and experience-sharing, allowing for a deeper understanding of the phenomenon of interest (e.g., waiting for fertility services) among the research team. Furthermore, using patient engagement tools such as the PPEET enabled the research team to effectively capture patient feedback, which helped the research team maintain a patient-centred perspective. For example, our patient partners acknowledged difficulties in comprehending research terminology and understanding the roles and expectations of patient partners within the research team. Thus, there was a deliberate effort to remove technical jargon from discussions for our subsequent meetings. Additionally, considering the patient partner feedback, the research team worked with the patient partners to clearly describe expectations and responsibilities to support meaningful engagement in the research process. In reflection on the patient engagement process, we recommend developing a comprehensive, plain-language patient engagement plan that outlines the research process and opportunities for patient involvement. Moreover, while the study benefited from using the PPEET tool, it would be helpful to employ other assessment tools to further understand the patient engagement experience and identify opportunities for patient involvement in similar projects (i.e., future studies in the field). Based on the current study, we recommend that future studies using patient engagement research develop studies that investigate the psychological and emotional impact of the waiting period for fertility services. Additionally, based on high-level feedback from our patient partners, a critical area of exploration is the availability of support networks and the use of coping strategies on the patients’ experience of infertility. Lastly, the ultimate goal of this work would be for patient partners to be empowered to create a patient-led intervention aimed at reducing emotional stress and anxiety while waiting for fertility services. Due to the limited number of fertility support groups in the province, locating patients willing to become research patient partners is challenging, and the purposive sampling strategy introduced selection bias. Furthermore, by exclusively studying the person who is seeking pregnancy as a patient partner, this study may reflect a narrowed patient perspective in which valuable insight from the non-birthing person is missed. Additionally, recall bias and social desirability bias may have influenced participants’ ability to remember information accurately and may have impacted them to present themselves favourably. Finally, while the study contributes to emerging patient engagement research and may be used as a reference for conducting patient-oriented research within the field of infertility, the research findings may not apply to populations beyond those studied or the broader field of reproductive health in general.

Below is the link to the electronic supplementary material. Supplementary Material 1 Supplementary Material 1