Patient engagement in the SPOR Evidence Alliance: Reflection and learnings

Underpinning patient engagement in health research is the motto “Nothing About Us Without Us” (Staley 2009; United Nations n.d.). Support for involving community members in health research has grown considerably over the last two decades, with funding agencies recommending patient–researcher partnership as a means to improve research quality (Canadian Institutes of Health Research 2014; Patient-Centered Outcomes Research Institute 2016; Michael Smith Foundation for Health Research 2014; Boote et al. 2002). Patient engagement in research is broadly understood to occur when people with lived experience are actively involved in governance, priority setting, conducting research, or knowledge translation activities (Leese et al. 2018; Hamilton et al. 2018a). Hamilton et al. (2018a) described meaningful patient engagement as a planned approach that involves patients and their caregivers in the research process, with these individuals perceiving it as a rewarding and productive experience. Here we use the term “patient partners” to describe patients, their caregivers, and the general public who engage in health research activities in partnership with researchers.

It is generally recognized that involving patients as partners can improve relevance of health research and facilitate dissemination of results (Canadian Institutes of Health Research 2014; Boote et al. 2002). The literature has credited patient involvement with illuminating new areas of inquiry, increasing study enrolment, improvements to study protocols, sharing ownership of the research process, and knowledge translation (Rhodes et al. 2002; Kirwan et al. 2005; de Wit et al. 2013; Holmes 2014; Leese et al. 2018; Salsberg et al. 2017; Forsythe et al. 2016). Although most reports focus on the benefits of patient involvement in research, some studies identified challenges. For example, a case study led by patient partners in a Patient-Centered Outcomes Research Institute (PCORI) funded project documented challenges for fully integrating patients into research teams (Robbins et al. 2016). In another qualitative study of 50 patient partners and research stakeholders, Hahn et al. (2016) outlined characteristics of tokenism (i.e., researchers making perfunctory or uninformed gestures towards engaging with patients) and ways to minimize it. A scoping review also highlighted the potential for power imbalance between patients and researchers, and issues around adequately valuing patient partners in the research process (Bird et al. 2020). These studies highlighted the importance of matching partners with the “right” projects to better assure a successful partnership. In a qualitative study involving 22 people with arthritis who had previous experiences as patient partners ranging from 1 month to 10 years, Leese et al. (2018) addressed ways of minimizing challenges in partnerships, including: (i) negotiating the value of different ways of knowing (e.g., lived experience vs. objective fact) and (ii) having an environment that supports the physical and emotional impacts (e.g., fatigue, stress, uncertainty) of engaging in research as a person living with chronic illness.

In summary, current evidence suggests that the role of a patient partner can be both rewarding and burdensome. Increased efforts are often needed to support patients as partners in health research. The purpose of this paper is to offer an example of a patient–researcher partnership in a national research alliance and our learnings from the past three years. First, we describe how patient partners have been involved in the governance, priority setting, and research teams within the SPOR (Strategy for Patient-Oriented Research) Evidence Alliance (SPOR Evidence Alliance n.d.-b). Next, results of a self-study on the perceived quality of involvement of patient partners are reported. The paper ends with reflections on opportunities to advance the practice of involving patient partners in research within the SPOR Evidence Alliance.

Established in September 2017 and fully operational as of April 2018, the SPOR Evidence Alliance is a Canada-wide alliance of researchers, trainees, patients, health care providers and organizations who use health research to inform decisions. The Evidence Alliance provides national-level support in knowledge synthesis, clinical practice guideline development, knowledge translation, and patient-oriented research. With a mandate to deliver the best available evidence to inform health policy and improve patient care, the Evidence Alliance has created an environment where patients and their caregivers are actively involved in its governance, research priority setting and conduct, and capacity building (SPOR Evidence Alliance 2020).

The Evidence Alliance draws on the guiding principles of the SPOR Patient Engagement Framework of Inclusiveness, Support, Mutual Respect, and Co-build (Canadian Institutes of Health Research 2014). Several patient partners participated in co-creating the funding proposal and the patient partner engagement strategy (SPOR Evidence Alliance 2020) through an iterative process. Over the years, the Evidence Alliance has expanded their membership by actively recruiting new patient partners across Canada. The Evidence Alliance considers all individuals, who are interested in participating in the organization’s activities in the capacity of a patient, as patient partners. To date it has 28 patient partners; of those, 17 have participated in the Alliance’s operation. The remaining individuals are new members who will start participating in activities when they feel ready.

In 2020, the Evidence Alliance conducted a self-study on the experiences of this patient–researcher partnership from a patient partner perspective. An ad hoc team, consisting of five patient partners, three researchers, two trainees, and one research staff member from the Evidence Alliance developed the online questionnaire. A total of 17 patient partners, who had been actively involved in the Evidence Alliance’s activities, were invited to complete the survey.

Quality of partnership was assessed with the Patient Engagement In Research Scale 22-item short form (PEIRS-22) (Hamilton et al. 2021). The original PEIRS (37 items) was developed based on an empirical conceptual framework and a literature review (Hamilton et al. 2018c). Each item of the 22-item measure is rated on a 5-point Likert scale to evaluate meaningful engagement in research (internal consistency α = 0.96). PEIRS-22 showed acceptable floor and ceiling effects (<15%) and test–retest reliability (intraclass correlation = 0.86). The overall possible scores range from 0 to 100, with a score under 70.1 meaning a low-to-moderate level of meaningful engagement, and above 92 meaning extremely meaningful engagement from a patient perspective (Hamilton et al. 2021). In addition, the patient partners were asked to elaborate on their ratings on the PEIRS-22 and how their involvement had changed because of the COVID-19 pandemic.

To maintain confidentiality and reduce bias, patient partners’ PEIRS-22 scores and demographic information were summarized in descriptive statistics by a biostatistician who was not an Evidence Alliance member. For the free text data, a thematic analysis was conducted by the two PhD trainees who were not involved in the day-to-day operations of the Evidence Alliance (JL, TO). Both have been trained in qualitative research and analysis, and one trainee has been involved as a patient partner in a research setting in British Columbia prior to beginning her research training (TO). Initial open coding (i.e., assigning conceptual labels to content elicited during the sessions) was followed by clustering the labels into thematic categories. Each researcher read and coded the free text independently. The codes were then compared and discussed to achieve a broad initial coding scheme. Preliminary themes were presented and discussed with the patient partners in the self-study team to enhance rigour.

The SPOR Evidence Alliance was established with a goal to support and advance patient-oriented research. As such, it has invested heavily in supporting patient partner involvement in the research process since inception. This has led to the success of recruiting individuals from across Canada. This self-study reveals that our patient partners have been actively involved in a variety of roles and activities. On average, individuals felt that their engagement with the Alliance has been meaningful, as reflected in the mean PEIRS-22 score. The mean score was 82.1 (SD = 15.9), which is above the cut-point of low-to-moderate level of meaningful engagement (70.1) and below that of extremely meaningful engagement from a patient perspective (92). Findings from the free text analysis, further revealed strengths, as well as opportunities for improvement from the viewpoints of patient partners.

In general, the patient partners credited the Evidence Alliance with supporting their involvement in a variety of roles and activities. While there was agreement that the Evidence Alliance has created a collegial environment for collaboration and co-learning, some experienced situations whereby a more deliberate process could have been helpful to involve patient voices in decision-making. One approach to improve in this area could be for committee chairs and project leads to periodically check if the ground rules for decision-making are addressing the needs and expectations of patient partners. To this end, tools such as the Patient Engagement In Research Plan workbook (Hamilton et al. 2018b) could be useful to facilitate open conversations. For complex or potentially controversial decisions that require deeper discussions, consensus techniques such as deliberative dialogue may be considered for reaching a thoughtful decision (Acosta et al. 2017). Since this technique performs better when applied with an experienced facilitator, this might be an area for the Evidence Alliance to build training capacity.

A strength of the Evidence Alliance is the creation of a comprehensive patient engagement strategy (SPOR Evidence Alliance 2020) and compensation policies (SPOR Evidence Alliance 2019), acknowledging the unique and important contributions of patient partners. The self-study, however, revealed an opportunity to improve the speed for processing compensation for the partners. Fair and timely compensation is essential for showing respect to the patient partners and that their contributions are valued (Richards et al. 2018). While the processing time for compensation claims in academic and research institutions varies, a streamlined protocol will likely be helpful to ensure timely payments.

This self-study has also uncovered areas for further work to advance the practice of patient involvement in the Evidence Alliance. Among those who completed the survey, the majority self-identified as women, white, and having a university degree or training in a trade. These findings resonate with an observation that research teams tend to involve patient partners who are selected and in a position to contribute their perspectives (Leese et al. 2018). It has been suggested that sometimes the criteria used to identify patient partners might have contributed to the homogeneous characteristics in research groups (Canfield 2018). Ideas generated from these selected groups, however, may not represent those from larger target populations, when some members are not able to add their voices because of age, race/ethnicity, sex/gender, disability, occupation, education level, socioeconomic status, and where they live. To this end, we consider this an opportunity to expand on the Evidence Alliance’s patient partner outreach and recruitment strategy to include a more diverse group of partners to join at different levels of the Alliance’s operation.

The self-study has several limitations. First, since it was a co-learning opportunity for patient partners and researchers, the survey was designed for a quality improvement purpose rather than seeking answers that are generalizable to other research partnerships or settings. Second, the qualitative data were analysed by the research trainees who were not involved in the day-to-day activities of the Evidence Alliance. Specifically, this was highlighted by one patient partner during reviews of this paper that the free text data coding and thematic analysis was done by the trainees with patients involved only at the feedback level to ensure the findings resonate with their experiences, once the preliminary themes had been identified. While this process could result in missing some nuances in the responses, this was necessary for protecting the identity of patient partners who contributed their thoughts. We have balanced this approach by involving a research trainee with experience as a patient partner to add a critical lens to this analysis. Finally, this study centered only on the experiences of patient partners. Given that patient–researcher partnership is a complex and dynamic process, we recognize that further evaluation from the perspectives of researchers and other stakeholders will help to enrich our learning.

In conclusion, this self-study has offered a dedicated opportunity for the Evidence Alliance members to pause and listen to patient partners and identify areas for growth and further evaluation. Overall, our patient partners commanded about the respectful environment within the Evidence Alliance and identified opportunities for growth. The use of a standardized questionnaire on meaningful patient engagement with open-ended questions allowed us to gain a deeper understanding of our current practice, which was rewarding. We encourage research teams and networks to consider this approach when pursuing future self-studies of their own.

We thank all the patient partners who have contributed to the development, operation, and growth of the SPOR Evidence Alliance. We also thank Leo Lu for providing statistical support for the self-study.