We have to tell our stories so many times, but nothing changes. This space feels like a place where the stories matter and are heard.”
Research centering the perspectives and needs of people living with chronic conditions is essential for improving care. We know that there are groups of people whose voices are needed to inform research, but may feel hesitant to engage due to past experiences. There are also researchers who want feedback on their science but don’t know how to best listen to the people they want to serve. Our project, funded by the Patient-Centered Outcomes Research Institute Eugene Washington Engagement Award (EACB 26582), sought to increase our understanding about how to bridge this gap.
We focused on improving research on maternal health by building a learning community of Black and Native American women to inform reproductive and chronic disease research in the form of a patient advisory group available to consult with academic investigators. The design was informed by the Vanderbilt Institute for Clinical and Translational Research’s Community Engagement Studio and the University of South Carolina’s Patient Engagement Studio. Our primary research team included four academic faculty and four patient/community partners. Patient advisory group members included 17 Black and Native American women between 30-54 years old, with at least one chronic condition known to negatively impact pregnancy outcomes. We identified five academic research teams investigating topics relevant to women’s reproductive health and facilitated sessions for each research team to engage with the patient advisory group and receive feedback about their research. Surveys and/or debriefing sessions with the patient advisory group, researchers, and our primary team were thematically analyzed to identify lessons learned from our work.
Through this process we learned crucial lessons about bridging researchers and the people living with chronic conditions. Patient feedback led to identification of study design improvements which have the potential of decreasing bias, increasing engagement with diverse populations, and increasing the effectiveness of data collection. Our diverse primary team composed of researchers and patient/community partners was crucial for facilitating engagement between academic investigators and patient experts. For patient partners, the experience facilitated self-advocacy, built trust, and increased their likelihood of wanting to participate in future research.
There were some moments that were uncomfortable but that doesn’t mean negative. In general, all the sessions were positive – if nothing else I learned something from every session. I learned more about how researchers feel. That is the other side of the coin that can bridge the gap.”
We engaged a graphic narrator to help our patient partners and research team best share perspectives on the process of connecting with each other. The image at the top of the blog is from the patient partner final session and the image below is from the research partner final session.
Community engagement studios that center the perspectives of people with lived experience are mutually beneficial for academic investigators and patient experts. They offered potential improvements for increased effective and equitable research, investigator appreciation of the patient perspective, and empowered research participants. Although bringing together researchers and those living with the conditions they seek to address requires intention and care, it has incredible potential to improve the quality of research and build community trust.
As an Indigenous person there is a historical reason for not trusting in research or that I wasn’t enough or what I said wasn’t meaningful, but now I know it is. Now I know that my voice is important and matters. It is important that researchers hear that.”
Yes it builds trust – not a light switch – but it builds it…makes me more willing to participate in research instead of being afraid.”
We invite you to watch our video and listen to the voices of our patient and community partners directly! Click here to watch!
Interested in learning more about how to effectively connect patients and researchers? Please reach out to Sarah Verbiest @ Sarah_Verbiest@med.unc.edu – she and other members of the team are happy to coach you forward!
