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W-21: Meaningful Patient Engagement: From Vision to Reality in the Rare Disease Space

Poster Presenter

Linda Brennan

Director, Community Partnerships
Cystic Fibrosis Foundation
United States

Objectives

Apply innovative practical approaches to developing collaborations between patients and the research community across the research continuum. Identify and formalize opportunities for patients to meaningful engage in in research activities.

Method

To increase patient engagement in clinical research the Cystic Fibrosis Foundation created two mechanisms to connect the CF research community to the CF patient community: Community Voice and Research Voice. We studied whether CF researchers were more likely to engage patients in study design when there was an easy mechanism to do so.

Results

Our hypothesis was that if there was an easy mechanism by which CF researchers could engage with the CF Community to get patient input in the research process the number of projects incorporating patient feedback would increase. In order to test this hypothesis, we tracked both the number of members of the CF Community who were signing up to be involved in Community Voice and Research Voice as well as the number of projects that the research community were conducting to engage the CF Community in any research related project over the last three years (2016-2018). Our findings indicated that our hypothesis was correct. We saw growth in both the membership numbers of Community Voice and Research Voice and an increased number of projects soliciting input from the CF Community in CF Research.

Conclusion

Including the patient perspective in drug development and research is increasingly seen as critical to ensuring that research questions are directed toward questions that matter most to patients and to ensuring that clinical trials designs are feasible. People living with the disease or condition being studied are experts in the disease experience, and their insights are invaluable for prioritizing, designing and conducting studies. However, significant barriers including time, cost, and other logistical factors can make meaningful patient engagement and collaboration difficult to operationalize. By creating easy mechanism to engage the patient community in research the CF Foundation has worked to overcome these barriers, and to foster engagement from diverse segments of the CF community rather than a small number of token patient representatives. The CFF created two mechanisms to connect the broader research community to the CF patient community: Community Voice and Research Voice. We were able to demonstrate that by creating and facilitating a system for the research community to engage with the patient community, there was an increase in the number and ways in which CF patients are able to meaningfully collaborate across the therapeutic lifecycle. These patient engagement opportunities for the CF community ranged from research prioritization, fiving feedback on study design, participation in a central Investigational Review Board, the CF Data Safety Monitoring Board, the CFF Clinical Research Advisory Board, and grant review committees. We also found that tools, such as promotional materials, and training lead to enhanced buy-in and increased opportunities for patient engagement.