My Opinion Matters Too! What Makes Patient Partners Feel Valued in Patient-Oriented Research? Learning From Patient Partners who Experience Barriers to Engagement in Healthcare and Research

Theoretical Positioning

To gain deep insights about diverse patient experiences and meaningful inclusion in POR, we used a critical, qualitative exploratory method informed by principles of equity and intersectionality whose theoretical underpinning is explicitly oriented towards transformation, building alliances among different groups, and working towards social justice (Collins & Bilge, 2020; Crenshaw, 2017). Grounded in the work of Black feminists, intersectionality adds a distinct analytical lens that challenges researchers to consider the impacts of diverse overlapping and interconnected systems of power (such as sexism, racism, and ableism). These systems give rise to unique experiences of health and wellbeing, including marginalization (Abrams et al., 2020). Further informing our analysis are key principles relating to power, inclusion and representation, social justice and equity, social locations, safety, reflexivity, and diversity of knowledge. Guided by Bauer (2014), we adopted an intersectionality approach which includes: (1) considerations of how complex and intersecting identities impact engagement experiences, (2) engagement with diverse communities of patients and researchers to inform the project, and (3) the adoption of multidimensional and anti-categorical approaches to analyzing data from individuals with diverse identities and social locations (such as gender, practice position, and ethnicity).

Reflexivity and Positionality

To ground our research within collaborative practices, we used an Integrated Knowledge Translation (IKT) approach. Planned from the outset, this approach provides a collaborative research framework that sets out processes for exchanging knowledge, making decisions about methodology and stipulating involvement in the collection, interpretation, and dissemination of data between the researchers and knowledge users (Kothari & Wathen, 2013). Of note, our team was co-led by a patient partner and included leaders from two not-for-profit community agencies that work with communities facing complex health and social care issues. By adopting this approach, our team worked to foster meaningful partnerships by promoting inclusive team activities, conducting frequent meetings, and creating a plan to facilitate and support recommendations. This collaboration helps to facilitate mutually beneficial research studies to address the priorities of knowledge users.

Our research team itself reflected diverse backgrounds, with respect to key demographic (e.g., gender, age, ethnicity, location) and professional (e.g., career stage and roles) characteristics. This enhanced the conceptualization and implementation of the research and provided opportunities for capacity building and mentorship. Of note, the team included researchers from three universities across British Columbia, a patient-partner who led and co-led several research activities, two community knowledge users, and a librarian. Research assistants and trainees from different stages of their education were engaged, including undergraduate, graduate, and post-doctoral trainees from a variety of disciplines, including public health, psychology, nursing, and environmental studies. Team members also represented diverse ethnic and racial identities, with several having minoritized backgrounds.

Participant recruitment was approached thoughtfully, particularly when potential participants had pre-existing connections with team members, to ensure that participation was voluntary and free from any sense of pressure. Participants received consent forms and interview schedules in advance of data collection and were given a minimum of 24 hours to review all study materials prior to the interview. They were also invited to request any support needs for the interview (e.g., translation services) and could opt to complete the interview in a dyad if there were concerns about potential power imbalances. Throughout all interactions, researchers used inclusive language, including respecting participants’ preferred pronouns and accommodating participants’ language and syntax.

Sample

To recruit our study sample, we utilized purposeful and snowball sampling techniques. Team members utilized their own connections within communities to identify potential participants. Snowball sampling techniques were also employed to garner participation from individuals who have engaged in POR partnerships that were both successful and unsuccessful. The participants for this study were pulled from a larger sample of 37 participants that were part of a larger study. This paper focuses on the 14 participants that were identified as patients or community partners engaged in POR. Participants were recruited from across all geographic areas of British Columbia, Canada, with over 60% living in Vancouver and surrounding areas and 29% in northern and rural British Columbia. Moreover, the 14 participants ranged in age from 38 to 79 years old, with 11 identifying as female, two identifying as male, and one choosing to not disclose their gender. Regarding ethnicity, of those who disclosed theirs, six reported that they were Caucasian, Canadian, or a White settler and four identified themselves as Korean, Chinese, or Indian. 12 participants were interviewed individually and two were interviewed in a dyad. In this paper, we draw directly from the insights of the patient and community partners.

Data Collection and Analysis

Our research was informed by a critical theoretical approach of intersectionality and included an intentional exploration of how interaction of different social locations (e.g., ‘race’/ethnicity, Indigeneity, gender, class, sexuality, geography, age, disability/ability, gender, class, sexuality, migration status, religion) shaped participants’ experiences of partnerships (Bauer, 2014; Bowleg, 2012; Hankivsky, 2022). In our interviews, we sought to curate brave and safe spaces in which participants were able to share their own experiences of POR and social exclusion and discuss their broader engagement within the POR landscape.

To generate in-depth and rich accounts, semi-structured interviews were conducted by experienced qualitative researchers (DB, NC, SM, SD). A preliminary interview schedule was co-created by members of the research team, including patient and community partners (see Appendix A). During the interview, we asked questions aimed at uncovering experiences with, barriers to, and facilitators of engagement in POR, including asking open-ended questions about how their own social locations impacted their experiences of engagement and partnerships. The semi-structured interview approach both supported the in-depth exploration of the focal topic and provided the opportunity to garner broader insights and experiences. Interviews took place via telephone or Zoom and lasted up to 90 minutes. These were digitally recorded and transcribed verbatim. Only the data originating from individuals who identified as patients or community partners were analyzed for this portion of the study.

Thematic analysis was utilized for this study (Braun & Clarke, 2006). Data were first cleaned for accuracy and then de-identified and stored securely in an encrypted and password-protected platform. Data were read closely prior to analysis, allowing for immersion in the data, and then coded using a qualitative software program (NVivo 12). Initial codes were generated independently by a team of researchers (DB, NC, SD, KG, JG, and JF), with each of the transcripts coded at least twice independently. Preliminary themes and interconnections were documented in an analysis table and shared with the research team. Focused discussions were undertaken to support ongoing data analysis and interpretation. The analysis table was updated and then supplemented with illustrative quotes and descriptors. Analysis of sex- and gender-based considerations was undertaken and extended further through intersectionality theorizing. Specifically, we adopted a critical stance toward categorical theorizing, which includes intra-categorical analysis to reflect the complex and overlapping impacts of power and social location (McCall, 2005). Having determined that theoretical saturation had been accomplished, no further participants were recruited (Fusch & Ness, 2015; Sandelowski, 1995).

Ethical Considerations

The study underwent harmonized research ethics board review and was approved [H19-01726-A001]. All participants were provided with a letter of introduction, a comprehensive information sheet, and consent form. Participants were encouraged to contact the lead researcher if they had further questions or concerns or wanted further information. Participants were given the option to provide either written or verbal consent, and ongoing verbal consent was confirmed prior to any data collection. In addition, data was de-identified to promote confidentiality. Given the sensitive nature of the research, care was taken to foster safe and inclusive environments. Participants were made aware that they were able to refuse to answer any questions and were provided with a list of accessible support services if needed. Likewise, the demographic survey was designed to allow for identification of various social and demographic characteristics that helped us to define our study sample and ensure that diverse perspectives were included in the research. Participants were encouraged to only answer what was comfortable.

Rigor

To facilitate the credibility of our findings, we engaged in prolonged immersion in the data, providing detailed descriptions and excerpts reflecting diverse patient experiences and voices. Additionally, we continuously involved community and patient partners on the team to reflect on and ground our analysis in the lived experience of the participants. The insights of community and patient partners were instrumental in supporting the analysis of the data and helped sensitize the team to tacit assumptions and more nuanced interpretations.

Building Trusting Relationships and Communicating Effectively

As a central aspect of the POR experience, participants unanimously identified the importance of building trusting relationships between researchers, fellow patient partners, and knowledge users. When strong and trusting relationships were not formed, participants described that this adversely affected their ability to engage and gave rise to concerns about tokenism, meaning that participants’ involvement was cursory as opposed to meaningful. Participants noted that poor relational practices restricted productive conversations, gave rise to concerns about the credibility of the research, and limited the perceived value of collaboration (described by one participant as “tokenistic”). Central elements of trusting relationships were described by participants through several subthemes.

Respecting Patient’s Expertise and Recognition for Contributions

Community and patient partners expressed desire for greater recognition of their contributions, in particular noting that their contributions were a legitimate form of knowledge and expertise. For many participants, their engagement was perceived as offering important social and economic benefits, including making the research more socially responsible and impactful. One patient partner noted that the publicly funded nature of research gives rise to an onus and expectation that the research being conducted “will impact the people it’s intended to assist” (P009).

Underpinning participants’ expectations of engagement was a desire to be treated equally within the team environment. This included having their contributions and time valued in the same way as it is for researchers and other knowledge users. One participant commented that their experience is “just as important as the doctor or the researcher with all the education” and that participants’ opinions and experiences are “just as valuable and worth the same amount” (P013). Participants noted that while researchers may have greater expertise in relation to research methodology and the technical aspects of the work, the experience of community and patient partners could provide further context to the focal topic and support more impactful outcomes and policy. This was seen as particularly important when conducting research with equity-deserving populations that have experienced significant barriers and marginalization. In particular, participants engaging in POR with immigrant, refugee, and newcomer populations and Indigenous communities noted the need for researchers to have well established expertise and experience, understand and unmask underlying racism and structural disparities, and appreciate the uniqueness of the population or community. Of note, some newcomer participants expressed profound caution around engagement activities, noting fears related to cultural, social, or political viewpoints of research. For example, one participant expressed explicit concerns related to research during the COVID-19 pandemic, recalling fear for the safety and wellbeing of their families within their home country if traced back.

During the interviews, participants also shared their desire to contribute as ‘whole’ individuals, recognizing their varied life experiences beyond their lived experience of a health issue. Some participants shared that they were experienced in other professional areas, which allowed them to have skills that could be utilized for additional pieces of the research project (e.g., community connections, interviewing skills, etc.). Many of the participants expressed that these varied experiences and skills were not widely recognized, valued, or utilized in their previous experience with POR.

When asked about strategies that may support participants to feel valued within a POR team, community and patient partners explained that teams should be willing to embrace their contributions and integrate these within the research. In particular, participants felt that researchers should consider their input regarding the topics and research questions they find interesting and important, rather than being a ‘token’ that furthers the curiosity of the researcher. Thus, participants expressed a desire that research studies should be tailored to, or include, the interests of the patient partner or the community more broadly.

Finally, participants noted that seeing something come out of a research project was an important way in which they came to feel valued. One community partner, who supports research teams in research with multiple marginalized populations, noted that there was a need to intentionally document how the contributions of those with lived experience impacted the work. For this participant, an opportunity existed to “create the narrative that her research brought forward and to use it not only to tell our story, but to hopefully have it as a very accessible manual for others” (P022). Other participants noted that seeing the outputs of the research, through knowledge mobilization, reinforced the value of the work and their contributions and made meaningful impact within their communities.

Working Across Diverse Social Spaces

When asked about how their own social locations intersected and influenced their experience of POR, some of the participants described how they often spanned multiple roles and social locations defined by gender, ethnicity, research capacity, and world view. For some, this means simultaneously occupying positions of advantage and disadvantage. Participants described how these complex positionalities, boundaries, and liminal spaces gave rise to unique challenges and opportunities. For example, one community partner described the duality of being disadvantaged in some ways, while also having the privilege of a Canadian graduate-level education, commenting that “it’s important for people to be aware that all of us have these different identities that give us some privileges and some disadvantages, so it’s important to be aware of this complexity” (P015). By engaging in research in this way, some of the participants reflected that they were navigating two distinct worlds, as well as bringing similar ‘intersections’ that may be experienced by the populations targeted by the research.

Compensating and Recognizing

Compensation and recognition emerged strongly during the interviews and was widely discussed by those with experience as a community or patient partner in POR. While participants noted that compensation and recognition can take many forms, monetary compensation was seen as a primary need in POR involving diverse populations that face barriers to engagement. Participants recognized that conversations around monetary compensation can be challenging, particularly when considering how much should be paid, who should receive compensation, and its prioritization in research budgets. Compensation was seen as a central aspect of feeling valued, closely tied to feelings of equity. Participants noted that while other team members typically participate in a formal and paid role (e.g., primary investigator, research assistant, policymaker, etc.), community and patient partners may be seen as “informal” participants and thus not be paid for their time. Participants felt that they should receive appropriate and timely compensation for their involvement over the duration of their engagement, and that this can help neutralize power imbalances and legitimize their contributions.

Although compensation was viewed as a basic component of participation, many recognized that the costs to participants (including those for attendance, childcare, and transportation) far exceed the financial compensation received. Not offering appropriate compensation to community and patient partners who, unlike researchers and healthcare professionals, are not in a salaried or hourly position, was seen as a key factor that both limited their input and created risk.

Of the 14 participants, 12 described, in some manner, the connection between lack of compensation and the risk that their voices may not truly be valued in the research process. One community and patient partner commented that there is a “fundamental risk” to participating in POR, whether it be the risk of re-traumatization, or financial risk (P011). In addition, participants recognized that equity-deserving populations, and those who already face barriers to participation, are especially impacted when compensation is not offered, and that this may result in harm. One participant noted that “vulnerable populations can be dealing with so many challenges but if the research team can provide some financial support, then again that’s one less barrier that they need to worry about to participate in the research” (P015).

While the desire for appropriate monetary compensation was made clear, alternative forms of reciprocity were also seen as important. For example, some participants indicated that while they may not actually need or want financial compensation in some situations, the meaning of the compensation held value. For some, compensation was a means of legitimizing and valuing their express expertise and contributions as patient partners and community members, as opposed to just their time. As noted, participants also highlighted that their skills typically expanded far beyond lived experience and included broad personal and professional experiences and insights. As many of the patient and community partners captured in this research held prominent roles in their respective communities and related organizations, their contributions included broader professional insights relevant to the engagement of diverse communities. This included a deep understanding of cultural and social values that can underpin meaningful engagement and impactful change. Thus, steps to offer appropriate recognition were seen as important, including direct recognition for their individual contributions and co-authorship on manuscripts.

Taking a Trauma-Informed and Culturally Sensitive Approach

Engaging with POR teams requires a strong sense of humility and reflexivity. This was particularly important among community and patient partners, who were often asked to share personal and vulnerable experiences in a unidirectional manner, without similar vulnerability flowing from researchers. As one participant explained, “you’re the only one at the table with a personal view …it’s a vulnerable space” (P026).

Participants expressed that a safe and inclusive partnership space was critical to enabling them to share their experiences, and that this included a need for research teams to adopt trauma-informed and culturally sensitive practices. In doing this, patient and community participants expressed the need for reciprocity and respect, along with partnership spaces that were affirming, accountable, open, and safe. Participants identified the need for dedicated resources and strategies to support participants, who may experience potential distress, harm, or trauma when sharing their own experiences. For example, for those engaged in research focusing on mental health or substance use disorders, fears of, or experience of, stigma and prejudice was noted and contributed to poor partnership experiences. As one participant cautioned “we never know what’s going to trigger somebody…” (P006), while others discussed experiences of harms and re-traumatization, which left them needing time to ‘recover’ (P026) following research engagements.

When working with culturally diverse communities, community and patient partners recognized that engaging team members with expertise in trauma-informed practices is essential. For some, this was a means of creating spaces whereby the diverse experiences and perspectives that may exist could be acknowledged and recognized, as well as working to establish safe spaces through which the team could discuss and challenge dominant discourses and vantage points around health and healthcare issues. For Indigenous participants, or those engaged with Indigenous communities, the need to centralize community perspectives and needs was recognized, requiring researchers to create meaningful and reciprocal research spaces, recognizing the importance of Indigenous knowledges and worldviews. Furthermore, another patient partner commented on the importance of body language, both in terms of how researchers physically present themselves and how they perceive body language displayed by various individuals or groups.

Equally important to engagement was the recognition and mitigation of barriers (e.g. linguistic, ethnic, or cultural) that impede communication, compounding an already sensitive and complex situation. For example, newcomer populations (i.e. immigrants and refugees) often experience increased complex care needs and higher healthcare inequities (Bergold & Thomas, 2012; Snow et al., 2018). These groups often experience greater barriers for inclusion in POR, which may further perpetuate negative health outcomes. As a result, community partners working with newcomer groups noted that they often leaned on other patient partners for guidance and support, particularly during engagement activities that were sensitive. Finally, those working with older adult and rural communities also recognized that technical support and access to appropriate technology (e.g., tablets and printers) may be necessary, especially where virtual activities were planned and offered.

Recommendations

This research study has provided a deep exploration into POR with populations that face barriers to engagement in research, perspectives that are seldom heard. Key messages from the wider study are summarized in a range of infographics and resources (Banner et al., 2022a; 2022b; 2022c; 2022d; 2022e). Here, we have learned from patient and community partners that experience a range of overlapping barriers and social exclusions, examining factors that shape patient experiences in POR. These factors included effective communication, navigating mutuality and respect, compensation and recognition, relationship building, and trauma informed practices. While many of these factors reflect those described in the broader POR literature, we learned how these insights can be more nuanced when reflecting the diverse characteristics, identities, and contexts of those engaged and how common barriers can compound exclusion in POR. Researchers must be appropriately prepared to engage with diverse communities and well positioned to support meaningful partnerships and tangible impacts. Two main recommendations arose from this work: 1) Co-development of tools to support critical, reflexive, and equity-centered and trauma-informed practices, and 2) Co-creation and mobilization of anti-racist, equity-centered, and trauma-informed POR training programs.

In order to promote safe and trauma-informed relational practices in POR, research teams need to be well prepared and critically reflexive. Continued exploration of engagement practices among populations that face barriers is warranted and should continue to work to identify and promote best and promising practices. The creation and widespread mobilization of practical engagement and evaluation tools is needed. Tools should incorporate intersectionality (Kelly et al., 2021) and trauma-informed lens (Knowledge Translation Program, n. d.), while including actionable strategies that can assist teams to collectively navigate complex research and social spaces. In doing this, research teams must work together to continually examine, challenge, and evaluate their engagement practices.

Equity-centered, and trauma-informed POR training programs are needed. This is particularly important given the widespread drive among research funders to adopt equity, diversity, and inclusion within health research. A failure to adequately prepare research teams may give rise to harmful, tokenistic, and traumatic engagement spaces. Fulsome, intentional, and sustained engagement of diverse populations in the creation of training programs and infrastructure is warranted as a means of fostering inclusion and plurality, while avoiding the continued perpetuation of dominant voices and perspectives.

Limitations

While this study extends the existing literature and provides an in-depth analysis of the factors that shape engagement experiences in POR for people who experience multiple barriers, this study has some important limitations that must be considered. First, despite seeking to reach a diverse cohort of participants, the majority of participants were located in urban areas of British Columbia. Future studies should explicitly seek to engage community and patient partners from more diverse communities, including rural and remote areas, since this may yield new insights relevant to participation in POR teams. Secondly, as this research was focused specifically on British Columbia, future research that is broader in scope is warranted, including exploring experiences at a national and international level. Finally, while sex- and gender-based considerations were explored during analysis, this did not emerge strongly in the thematic analysis. However, greater diversity with respect to sex and gender in future studies would be beneficial.