2019 Annual Report: Valuing Patients as Equal Stakeholders

Through the DCRI Research Together™ program, the DCRI strives to view study participants as partners in research rather than research subjects.

The program was formed to help study sponsors meaningfully embed the patient perspective throughout the research process as clinical research becomes more patient-centered.

DCRI Research Together, led by program lead Renee Leverty, BSN, MA, (pictured left) brings together thought leaders in engagement to develop and apply fit-for-purpose strategies for effective patient involvement. By working to create a gold standard of partnership with patients and community groups in trial design, conduct, and oversight, as well as dissemination of results, DCRI Research Together aims to enhance participants’ experience and create more impactful research.

This engagement can take many forms. One approach is to assemble a panel of diverse patient advisors whose insights and experiences inform study teams and sponsors every step of the way. The Cardi-Yacks, a group of patients with heart failure, convened as patient advisors on the CONNECT-HF trial, worked on many components of the trial. They participated in end-user testing of a mobile app and provided feedback to developers before the app’s implementation in the trial. They also worked on developing a motivational enrollment game for sites, along with providing insights on study processes, materials, barriers, and retention.

The Cardi-Yacks’ contributions provided so much value that the group also advised a study team on maintaining patient-centeredness for a separate grant that was submitted to the Patient-Centered Outcomes Research Institute® (PCORI). In addition, one of the members is now serving as a co-principal investigator for another grant.

This article originally appeared in the DCRI's 2018-2019 Annual Report. View more articles from this publication.

Renee Leverty, BSN, MA, program lead for DCRI Stakeholder Engagement and DCRI Research Together, discusses how her team works with patients and patient advocates to incorporate the patient perspective in every stage of clinical research, from study design to dissemination of results.