Background/Purpose: The goal of clinical and health-related research is to benefit the end-consumer—the patient. Since patients are the experts on their unique experiences living with their condition, they represent an important stakeholder to engage in the research process. Patient engagement in research is an expanding area, elevating patients from solely research subjects to active collaborators in research development, design and execution. Despite the recognized importance of patient engagement, little has been done to examine how to better prepare patients for inclusion. The objective of this study was to provide an informational session to patients on patient engagement in order to: 1) elicit feedback regarding what information and resources they need to feel confident in participating in research, and 2) gauge their level or interest in being involved in future research.

Methods: A learning session was conducted at the 2016 National Gathering Conference, which was hosted by Arthritis Introspective and the Arthritis Foundation and provided educational sessions to adults with rheumatic diseases and their loved ones. Individuals did not register in advance for the breakout session and all were eligible to participate. The session lasted 1.25 hours and presented: 1) the value of patient engagement in research, 2) different levels patients can be involved in the research process and 3) basic research concepts and examples, and was followed by a discussion. At its conclusion, participants were asked to complete a survey to provide feedback regarding the session, indicate their level of interest in engaging in research and identify beneficial information and resources to increase or improve their involvement.

Results: Twenty participants attended and completed the survey (n=20). Of them, 15% indicated that they had some prior research experience (eg. college research assistant, advanced research degree, research team involvement) while the remainder responded no prior experience. Forty percent responded they were unaware patients could be involved in research beyond being a research subject. Participants rated on a 5-point Likert scale (5=high) how well the session was able to accomplish certain goals: 1) improved understanding of research process (4), 2) improved understanding of how patients can be involved in research (4.2), 3) helped them feel empowered that their experiences matter (4.05) and 4) made them interested in getting involved in research at some level (4.1). After the session, 75% of participants indicated they wanted more research training. Participants expressed interest in trainings that are conducted in-person, online or via webinars. Concerns regarding involvement in research included knowledge and access to opportunities and confidence to collaborate with researchers and clinicians.

Conclusion: The results of this study suggest that patients benefit from a basic informational session on patient engagement. Future efforts should include the development and evaluation of additional trainings and resources to increase research understanding and elucidate the value of patient involvement. Improved access to opportunities for patients involvement should also be considered.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/patient-engagement-in-research-understanding-patient-interest-and-needs/