Community Voices in Research (CVR): A lived experience expert-centred approach to advance the future of inheritable bleeding disorders

Maria E Santaella; Cynthia D Nichols; Michelle Witkop

doi:10.2478/jhp-2024-0020

Abstract

Abstract Introduction

Web-based registries are essential tools for gathering patient-reported information for research purposes. The National Bleeding Disorders Foundation recognised and responded to the imperative to actively include persons with inheritable bleeding disorders and their immediate family members, as Lived Experience Experts (LEEs), in all aspects of the research process. Consequently, Community Voices in Research (CVR) was developed and launched with the aims of creating a LEE-centred approach to complement existing research efforts, highlighting mechanisms to actively incorporate them, and using the data collected to identify relevant gaps in knowledge.

Methods

The evolution of CVR reflects active LEE involvement in its development. CVR, a community-powered registry, collects information through electronic surveys to understand the unique LEE experience and incorporate it into research. Information collected includes demographics, social determinants of health, access to care, diagnosis, symptoms, pain, and mental health. A Personalised Dashboard engages LEEs by providing data collected and linking them to educational resources and other research opportunities.

Results

CVR provides several mechanisms that allow LEEs to actively engage in different facets of the research process. LEEs share their experiences through timely surveys, and access publications using CVR data, opportunities to participate in other projects, and advisory boards.

Conclusions

CVR is a vehicle to collect both historical and contemporary data directly from LEEs to address research gaps. CVR provides researchers with a better understanding of the needs of LEEs and incorporates their unique and important perspectives in research, education, and advocacy.

Article

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Authors

Maria E Santaella

msantaella@bleeding.org

National Bleeding Disorders Foundation (NBDF) – Research Department, New York, United States
Cynthia D Nichols

Munson Medical Center, Traverse City, Michigan, United States
Michelle Witkop

Bleeding Disorders Consultant, Michigan, United States . Contributed to CVR development while employed at NBDF