Patient Engagement in Research

Authors believe patient engagement will lead to research findings pertinent to patients’ concerns and dilemmas. This systematic review research team aimed to answer four key questions: what are the best ways to identify patient representatives? How to engage them in designing and conducting research? What are the observed benefits of patient engagement? What are the harms and barriers to patient engagement? They found that patient engagement increased study enrollment rates and helped researchers secure funding, design study protocols, and choose relevant outcomes.

The most cited challenges were related to logistics (extra time and funding needed for engagement) and an overarching worry of a tokenistic engagement. Moreover, engagement helped disseminate to the extent that their reporting was more meaningful and understandable for participants and the community.

• Reviewed studies highlight different approaches to engage patients with the research circumstances, for instance: engaging patients in consultation to define their health research priorities that resulted in additional research topics that were not covered by current research programs, or patients attending outpatient cancer therapy to evaluate their attitudes, motivations, and barriers to participation in clinical trials, or asking a random sample of patients with diabetes about their preferences for future trials in diabetes in terms of design (pragmatic vs. explanatory trial design) and outcomes (surrogate vs. hard endpoints).

• The most common method used to engage patients were focus groups, interviews, surveys, and the most active form of engagement is serving on a study board or advisory council and attending regular meetings with researchers (as participatory research studies and community based participatory research). For example, engaging several stakeholders’ persons took the role of an advisory board and a partner in research. They helped develop study protocol, recruitment procedures, meetings and presentations, and selected outcomes, even execution of study intervention. It seems engaging patients through digital channels and electronic platforms are not included in this study.

• Patients have the capacity to contribute to every stage of a study, including study concept and design, data collection, data analysis or interpretation, conclusions, and even dissemination of results.