Engaging patients as partners in health research: Lessons from BC,Canada

Introduction

Canada is seeing increasing interest in engaging patients as partners in health research, recognizing the potential to improve its relevance and quality. ¹ This interest is spurred in part by Canada’s Strategy for Patient-Oriented Research ² (SPOR), which defines patient engagement as meaningful and active collaboration in activities such as governance, priority setting, research conduct, and knowledge translation. ^3,4 The SPOR builds on international work including INVOLVE ⁵ in the United Kingdom and the Patient-Centred Outcomes Research Institute ⁶ in the United States, as well as decades of work in patient engagement in healthcare, non-government organizations, and community-based research traditions.

The increased momentum for this activity is promising. However, in the enthusiasm to make patient engagement in research a reality, there may be a tendency to ignore the challenges inherent when lay people and professionals work together. ⁷ In this commentary, we discuss some of these challenges and address them as they relate to recruiting, training, and supporting patients for the British Columbia Support for People and Patient-Oriented Research (SUPPORT) Unit, ⁸ part of SPOR. We review a project involving several of the authors ⁹ alongside this framework to examine how these activities were approached.

Background

Community-based participatory research has a decades-long history. It is described as systematic inquiry in collaboration with those affected by the issue being studied and as combining knowledge with action to achieve social change. ^10,11 Another well-established area, patient engagement in healthcare, focuses on various levels from one’s involvement in one’s own care to governance and policy-making. ¹²

Systematic engagement of patients as active partners in health research is relatively new in Canada. Although some researchers have long partnered with patients, and non-government organizations have always involved affected populations in their work, SPOR is catalyzing a coordinated approach across the research enterprise. Led by Canadian Institutes of Health Research (CIHR), SPOR aims to increase research conducted with and by knowledge users, including patients. In particular, SUPPORT Units, which offer services for research teams, are generating substantial patient engagement activity.

In addition to this activity, there is a developing—but still sparse—literature on patient engaged research. It spans mostly the last decade and is based predominantly on anecdotal evidence and some reviews. ^{13 –15} There is little empirical evidence that defines successful patient engagement.

Patient engagement: Key elements

The developing BC SUPPORT Unit framework—a tool to conceptualize and organize our patient engagement activities—is built on the three elements of recruit, train, and support as explained below. Our understanding of these activities was enhanced by critical success factors drawn from Boivin et al. ⁷ who emphasize the importance of fostering credibility, legitimacy, and power balance in public participation. Credibility means contributing knowledge that is valid and relevant. Legitimacy is the ability and right to speak on behalf of others, and power relates to influence in decision-making. Although recruitment, training, and support are important for all stakeholders, ^16,17 for the purposes of this article, we focus on patients only.

Recruitment is the process of signing up the right people to work together. Potential patient research partners need personal experience of the topic and clarity on what role they will play, including what influence they will have. Understanding of health research is an asset but should not be a requirement; training can address knowledge gaps, and researchers should be prepared to mentor as needed. Potential challenges include validating patient involvement at all (other team members may argue “we are all patients”), securing people with the appropriate lived experience, inadvertently recruiting patients who are strong advocates for one way of thinking, and signing up patients with no links to larger populations with similar experience. In our experience, there is a tendency to select readily available patients and those who are articulate, experienced, and easy to get along with. It is difficult—but often critical—to engage harder-to-reach patients, including those with multiple conditions and low literacy or socioeconomic status, as well as ethnic minority groups and people living in rural areas. ¹⁸

Training includes initial orientation and just-in-time training depending on roles assumed throughout the project. Patients need to understand the project and its context. They will draw on their own experience, but it is helpful for them to have information about the broader population affected. Potential challenges range from availability of good training materials to recognition of what training is needed. For example, a common but mistaken assumption is that once assembled, teams simply know how to work together. Training on teamwork can be invaluable, as can training on how to contribute knowledge that is seen as valid and relevant, how to speak on behalf of others, and how to influence decision-making. Training should be budgeted in grant applications and project plans.

Support includes assistance with administrative, logistical, financial, and psychosocial issues. Through support, ideally barriers to engagement are removed and patients feel valued as members of the research team. Examples of support are travel arrangements, reimbursement for out-of-pocket expenses such as child care, or emotional support (eg, if sharing personal experience creates trauma). The main challenge to support is assuming all it takes is good intention. As with training, there are likely additional resources and specific expertise needed to help patients be seen as and feel themselves to be contributing members of the team. For example, focus group or survey data enable patients to speak on behalf of others. Expert facilitation can balance power, ¹⁹ ensuring all parties feel comfortable to speak up. Facilitation can also maximize divergent views as opposed to glossing over differences of opinion. ²⁰ Finally, funding for support—not only facilitation but activities such as team building—is an important but often overlooked aspect of patient engagement.

Evaluation of recruiting, training, and support for patient partners is critical for lessons learned and ongoing improvement. Such evaluation would ideally complement an effort to assess the hypothesized impacts of patient engagement, filling the current gap between engagement’s promises and the evidence supporting its practice. ²¹

Patient engagement in Telehealth for Emergency-Community Continuity of Care Connectivity via Home Telemonitoring

The Telehealth for Emergency-Community Continuity of Care Connectivity via Home Telemonitoring (TEC4Home) ⁹ research project examines the use of home telemonitoring for high quality and safe transition of patients with heart failure when discharged from hospital to home. It uses home sensors to collect patients’ biometric measurements (weight, blood pressure, pulse, oxygen saturation) that are monitored remotely by health professionals to detect deterioration, intervene early, and avoid unnecessary emergency department readmissions and hospitalizations. The triple aim framework ²² measures the efficacy of TEC4Home on patient health outcomes, patient experience, and healthcare utilization costs. Results will inform the scale-up and spread of home telemonitoring technology in settings across BC.

Phase 1, ending September 2017, was a feasibility study in three hospitals enrolling a convenience sample of patients to test models of remote care, technologies for monitoring, and the triple aim evaluation framework. Phase 2, starting early 2018, is a randomized clinical trial involving a range of urban, regional, rural, and remote communities across BC.

The engagement of patients as partners in the project was a requirement of the granting agency. Initially, one patient and two family caregivers were recruited to provide testimonials and help edit the grant application. They became team members and committee participants. Other team members are health professionals, researchers, administrators, policy-makers, industry partners, and non-government organizations.

Recruitment of the first patient was opportunistic. The principal investigator heard one caregiver speak about her experiences related to her father’s heart condition and approached her to help develop the grant application. The investigator then met with a patient and another caregiver through the Doctors of BC Shared Care Committee. ²³ It was recognized early that for this project, patients needed experience of heart failure, either directly or through informal caregiving. It was also recognized that three people could not represent all patients with heart failure, so recruitment for a patient advisory group began. It quickly became apparent that an established engagement mechanism was required (ie, more than informal outreach), so contact was made with Patient Voices Network ²⁴ and heart health-related organizations. There was no formal role definition for patients being recruited; other attributes and resources, for example, openness and objectivity, links to larger populations, were not formally determined. Ideally, these elements would be articulated in the recruitment materials. Finally, recruitment of harder-to-reach populations was not an issue in the first phase of the project, but it will be important as TEC4Home moves into phase 2.

The need for training of patient partners (or training in patient engagement for the rest of the research team) was not considered initially in TEC4Home. Learning occurred organically through communication and just-in-time coaching. In retrospect, structured training for patients on fundamental research concepts would have minimized misunderstanding and optimized synergy among the team. The TEC4Home patient partners are articulate, experienced, knowledgeable, and to varying degrees, comfortable in a research setting. However, misunderstandings could have arisen to hamper the cohesiveness of the team. For example, exclusion criteria to select patients for a study must be specific in order to answer the research question, but does not mean that excluded patients are not important. Patients coming to research without training may misperceive this issue, which in turn could generate further misunderstandings and misgivings about research. As the project moves into phase 2, training for patients who are new to research engagement will be critical.

Support for patient partners in TEC4Home has happened organically. Through open communication, the necessary support has become apparent, for example, ensuring patient partners get to know other team members. Awareness has matured about the financial costs of engaging patients, including reimbursement for out-of-pocket travel expenses to attend meetings. Power imbalances have not arisen due to the project leadership, which works to engage all members and value their input equally. Budgeting of patient engagement was done retroactively after successful grant application, but if done beforehand would have avoided a complicated budget rework. External facilitation did not seem necessary but could have been helpful if there was any perception of power imbalance. Finally, tasking one team member with patient engagement responsibility, though recommended, ¹⁵ did not seem necessary.

Finally, there was no plan for evaluating the patient engagement aspect of the study. This is not uncommon, given the newness of systematic patient engagement in health research outside of traditions such as community-based and participatory action research. However, CIHR is developing reporting requirements for research projects funded under SPOR.

Discussion

The above retrospective review reflects the current state of engaging patients as partners in health research in BC and beyond: research funders are increasingly making patient engagement a condition of award; researchers are interested in engaging patients; patients are interested to partner; and stakeholders instinctively know it is “the right thing.” Without a doubt, there are researchers who regularly partner with patients and non-government organizations that have long histories of involving patients in research-related activities. However, systematic patient engagement in research is new, and many of us are just reaching out and engaging those available without plans in place, learning as we go.

The TEC4Home project has fortunately recruited experienced people. Further, the research team has been supportive and communication has been open. Therefore, the project has been able to benefit from patient engagement through illumination of perspectives that are valuable to patients. For example, patients brought forth the important notion of co-monitoring. This results in home telemonitoring being not only about nurses overseeing patients’ physiologic states but also patients optimizing self-management through correlating their own actions with physiologic responses. Also, patients provided researchers with insights on how health professionals can best communicate news to encourage participation and avoid alienation. These examples strengthen patient recruitment for the study itself as well as adherence to telemonitoring, while helping researchers and clinicians understand what is important to patients beyond physiologic wellness and recovery from heart failure after hospitalization.

The patient engagement itself also presented important challenges to be addressed. These include: (1) involving patients who are willing to receive formal training in research to facilitate full participation in various committee discussions, (2) the appropriate budgeting to facilitate full and effective patient partnership, and (3) capacity-building in the sense of having more patients ready and willing to be engaged. This last point is especially salient as phase 2 will engage patient populations in different socio-economic, geographic, and cultural settings, thereby requiring a diversity of voices on the team for planning and implementation.

As noted above, undoubtedly the success to date of having patients involved in TEC4Home planning and implementation is due to experienced patients and family caregivers who are committed and enthusiastic, together with researchers and clinicians fully embracing patient involvement. We propose that all projects would benefit from thinking about recruitment, training, and support as described here to guide patient engagement in their research planning and implementation, anticipating the challenges in each area and mitigating them from the outset.

Projects would ideally also include the study of patient engagement methods specifically in order to add to this important body of knowledge. Scientifically tested and validated tools including models, frameworks, checklists, and outcome measures are critically needed to design, execute, and evaluate patient engagement. To help fill this gap, the BC SUPPORT Unit is building on a national initiative that saw the creation of an evaluation tool kit this year. ²⁵ The Unit has also launched method clusters to advance the study of patient-oriented research. ²⁶

Conclusion

It is becoming increasingly clear that, as well as the practical elements of recruitment and training and support, specific attention must be paid to challenges that could easily be ignored in the enthusiasm of this important endeavor. We propose that these challenges—many of which relate to issues of credibility, legitimacy, and power—are subtle, and therefore, focused effort is required to surface, strategize, and address them before a research project begins.

Of course, for patient engagement to thrive at a project level, the environment in which it takes place must be conducive. For example, with recruitment, ideally there are shared mechanisms for people interested in partnering to connect on projects but also to build strong relationships that can be drawn upon over time. With training, ideally there are curated, validated resources that can be easily accessed in a variety of formats that meet the preferences of learners. This is increasingly the case as SUPPORT Units develop resources and as CIHR refines Foundations of Patient-Oriented Research, a three-module course covering an overview of patient-oriented research, fundamentals of health research in Canada, and team building. With support, ideally there are policies in place to enable funding for staff time, expense reimbursement, and appropriate compensation of patient partners throughout the research process, including the pre-grant phase.

Finally, we emphasize that while this article focuses on recruitment, training, and support for patients, it is the case that attention to these areas is important for all team members. Patient engagement in health research is a team effort, with as much learning and adaptation required for researchers and other participants as for patients.