How to engage patients and clinicians as research partners, and have fun, too [poster] Conference Poster uri icon

abstract

  • Introduction: Health research funders are increasingly requiring engagement of patient and clinician stakeholders in research operations; however little is known about how best to do that. We have engaged patients and clinicians as research partners in two studies - TransforMN and PIONEER. Methods: We relied on extended networks of relationships with individuals in collaborator organizations (e.g., MDH, ICSI, HPMG) to help identify patients and clinicians willing to serve as advisers and co-investigators. In some cases, these individuals' were first recruited as study subjects and participated in research interviews, which provided them insight into the study goals and content. In other cases, they were recruited directly by the PI because of their knowledge and interest in the research topics. In all cases, direct, personal contact was necessary to successfully develop and maintain relationships. Results: Nearly all TransforMN Study clinician and patient advisors agreed that participation was a good use of their time; however fewer would be willing to serve on such an Advisory Board again. Achieving sustained, meaningful engagement without overburdening advisers is challenging. Payment for time is very important to patient advisers and somewhat important to clinic advisers. A good communications plan and multiple communications modes (phone, email, in-person, individual and group communications) are key. Dedicated study resources are required to manage these relationships. Discussion/Conclusions: Successfully engaging patients and clinicians as research partners requires a deliberate approach and plan, a budget to support their contributions, and time and resources to develop relationships.

publication date

  • 2013