Advancing Patient and Community Engagement in Occupational Therapy Research

Terminology

In the health services literature, the term patient engagement in research refers to involving people in a researcher role, distinct from involvement as a study participant. Canada’s Strategy for Patient-Oriented Research defines patients broadly as “individuals with personal experience of a health issue and informal caregivers, including family and friends” (CIHR, 2019, p. 5). Patient engagement in research is similarly used in several American initiatives, such as those sponsored by the Patient-Centered Outcomes Research Institute (Forsythe et al., 2019), while patient and public involvement (PPI) in health and social care research is widely used in the United Kingdom (Staniszewska et al., 2017). The word patient, however, does not fit the intent of public engagement outside the health sector. Acknowledging the range of health, social, and educational settings in which occupational therapy research occurs, we expand our terminology to include communities (individuals or collectives) as potential research partners, noting that co-researchers may include service users and knowledge users who are community members and leaders, service providers, and policy makers. Accordingly, we use patient and community engagement in research to refer to our topic, and patient and community collaborators to refer to people with lived experiences relevant to a study’s purpose, who engage in one or more phases of a research process in a designated research role.

Patient and Community Engagementin Research

Ideally, patient and community collaborators engage in research from conception (defining what needs to be studied, research questions, and important outcomes) through to sharing and implementing findings, with specific roles or contributions like any other member of the research team. In practice, they may engage in specific stages of a project depending on their interests, skills, and availability—also like any other member of the research team—from consultant to co-producer of research. Unlike being a study participant, where they contribute expertise or information as data, patient and community collaborators are integral members of the research team and bring a unique perspective as potential beneficiaries of the research. As consultants, they may advise on elements such as study protocols, readability of survey items, or final reports, but this role may be ancillary with limited influence; while as investigators or co-producers of research they actively contribute to decisions and steering the research (Price et al., 2021). The evolution of patient, family, and community members in research from advisors to co-principal investigators is observed as a “culture shift” (Pozniak et al., 2021) that occupational therapy researchers should embrace in both discipline-specific and interprofessional research. It is philosophically aligned with collaborative, team-based health and social care.

Genuine reciprocal relationships are at the core of engaging patient and community collaborators (Leese et al., 2018; Magasi et al., 2021; Montreuil et al., 2019; Tremblay et al., 2020). Power dynamics in the patient/community-researcher partnership can be a barrier to effective teamwork and should be acknowledged and addressed early in the relationship (Magasi et al., 2021). This is especially critical when partnering with members of marginalized communities who have experienced the inequalities arising from oppressive systems, policies, and colonial history. Recognizing relationships as fundamental to the collaboration and useful research outcomes means taking time to learn about shared interests and develop mutual respect and trust—one step toward decolonizing the research process. Genuine relationships generate research focused on issues relevant to the community, adoption of methods that are accessible and respectful (Montreuil et al., 2019), and strategies for interpreting and sharing findings in keeping with the community’s cultural characteristics (Rieger et al., 2020; Tremblay et al., 2020). It is incumbent on lead researchers to budget for and provide the training and support necessary to sustain patient and community collaborators’ participation.

Some research questions and approaches are especially reliant on community partnerships, many of which have a strong presence in the occupational therapy literature. For decades, community-based participatory action researchers have intentionally partnered with community collaborators to identify research questions and priorities toward addressing a particular health or social issue; the Canadian Journal of Occupational Therapy (CJOT) has published several studies of this nature (see, for example, Turcotte et al., 2019). While participatory research methods typically describe the roles of community partners as an explicit step, this element can also be integrated into other research designs, including qualitative methodologies (e.g., Leese et al., 2021) and multi-national clinical trials (e.g., Fletcher et al., 2018).

Why Patient and Community Engagement in Research Matters

In (co-author) Eileen’s experience as a patient collaborator, there are many reasons involving patients on the research team is beneficial. Involving patients with a social media influence or known in their community can enhance recruitment of study participants. Including patient partners from the start of the project can help identify outcomes that matter most to patients, discover procedural holes or gaps, and add clarity to the participant experience while keeping the research relevant to patients more generally. Patient partners can assist with plain language so that research information (recruitment invitations, consent forms, patient-facing study materials, findings) is easier to understand for participants, other patients, and the community. In (co-author) Catherine’s experience, patient collaborators have offered especially valuable perspectives when interpreting findings and articulating key messages at study conclusion, similar to reflections shared by Stocker et al. (2020).

Our experiences are supported by the literature. People “with lived experience are well-positioned to identify health care needs and factors that would improve their quality of life” (Cobey et al., 2021, p. 2). Meaningful patient engagement helps create programs of research more relevant and applicable to individuals and communities and leads to better health outcomes (Forsythe et al., 2019), a shared goal for researchers, patients, and communities alike. The ultimate goal of research is to make a difference, reduce inequities, improve health and social outcomes, and advance the quality of services delivered—why wouldn’t research teams work with and alongside the people directly affected by the issues giving rise to the research?

Advancing Meaningful Patient and Community Engagement in Research

There are challenges to authentic collaborator engagement (Montreuil et al., 2019). It may be easier to recruit partners where infrastructure such as patient networks exist or a culture of patient and community engagement in research already prevails (Pozniak et al., 2021; Vat et al., 2017). Yet meaningful patient and community engagement in research is feasible in most settings and overcoming the challenges a worthwhile endeavour considering the benefits. Regardless of our skills and experience in the research enterprise, most of us can up our game in patient and community engagement in research. To be meaningful, the engagement process recognizes the power and potential of nurturing relationships and avoids pitfalls like the illusion of inclusion (i.e., inviting partners without involving, respecting, and valuing their contributions, perpetuating power imbalances in decision making). Established research groups offer resources for negotiating roles, responsibilities, and recognition of patient and community collaborators in research, and evaluating patient and community engagement in research (e.g., Hamilton et al., 2018; Staniszewska et al., 2017). A concept analysis of public involvement in research identified important antecedents and consequences for effective public involvement in research, such as clear goals, sufficient preparation and support, reciprocity, sharing control, and valuing different perspectives (Hughes & Duffy, 2018). Inviting multiple patient and community collaborators to the team is a good strategy for many reasons: no two stories are the same and diversity is welcomed; the realities of living with chronic conditions or uncertain circumstances can affect availability, so being able to share the load is important; and a sense of belonging and support can be fostered when one is not a solo (or mistaken for a token) voice.

The practice of patient and community engagement in research can be advanced if research reports make it transparent, both in plain language reports for communities and papers in scholarly journals. Documenting the lessons learned during the research process in a report for the community is an example of the former, giving a head start to subsequent research projects (e.g., Kiepek et al., 2020). The method section of scholarly papers should describe the patient and community consultations, collaboration, or co-production process, to support replication, evaluation, and improve our research practices. Last year, our colleagues at the British Journal of Occupational Therapy revised their editorial policy to require a PPI statement for all papers, a declaration intended to value the skills and knowledge shared by partners and elevate PPI to “an essential part of the whole research process” (de Iongh et al., 2021, p. 459). They argue that readers need enough information to critique the PPI process, just like any other part of the research method, and assess its rigor.

CJOT welcomes patient and community collaborators as authors; the journal endorses the International Committee of Medical Journal Editors’ statement on authorship (ICMJE, 2019) which identifies four criteria for inclusion as an author. It is not necessary for one to have a specific title, position, or credential to fulfill authorship criteria. Contributors who do not meet all criteria should be appropriately acknowledged for their specific contributions, with their agreement. A survey of 112 international editors-in-chief of medical journals explored perspectives on patient partners as authors (Cobey et al., 2021). While the majority supported patient authors, 31% reported it as inappropriate. Despite the survey defining patient engagement in research, Cobey and colleagues suggested some responding editors may misunderstand the contributions of patient and community collaborators. Concerns were expressed about the research being unduly influenced by patient bias; we ask, does that potential for bias not exist with all authors? For the 31% of editors opposed to patient authors, the shift toward collective leadership, power-sharing, and co-production is incomplete. A more enlightened view was shared by the study authors: “Access to, and awareness of, appropriate authorship criteria is an important right for patient partners” (Cobey et al., 2021). Notably, their study team included patient authors, as do many of the works we have cited in this editorial.

Conclusion

Patient and community engagement in occupational therapy research is growing and there is a considerable body of literature to draw upon to ensure it continues to flourish. Patient and community engagement helps to focus research questions on what truly matters to them and generates a shared purpose for all involved. CJOT promotes inclusive authorship practices that recognize patient and community collaborators’ active role on research teams and their experiential knowledge. Furthermore, research papers need to clearly describe methods to engage patient and community collaborators because it is only through transparent and explicit communication that their contribution is recognized and can shape future research practices.