I first encountered PCORI in the course of doing my ministry work. My background is as a minister, a community advocate, and a community organizer, and I immediately recognized PCORI as another way I could serve the community. PCORI gave me an opportunity to talk to people about things that really matter to them, like their health struggles and how to improve their lives.
Working with PCORI, I’ve learned how research ties into the daily lives of people I work with. Research is making a difference for that mother who’s living with HIV and for the folks dealing with substance abuse. In one of the first projects I did with PCORI, I worked with youth on ways to use research to end violence in communities. Using research was a different way of doing things, and a new way to make a difference.
Community members who work with PCORI become more and more engaged over time. They gain more ownership.
Early on in my career, when people talked about research, it was always what we didn't trust about it. PCORI has enabled us to have longer conversations about research, and now I see how it can empower people. Research helps people see that they can improve their blood pressure, or prevent diabetes, or improve how granny is being treated in her nursing home.
In my community, folks are looking for answers, and PCORI lets them be a part of finding those answers. PCORI engages patients in meaningful, respectful ways that allow them to feel like not a subject but a part of the solution to the problem they're facing. Community members who work with PCORI become more and more engaged over time. They gain more ownership. People who would never ask their doctor a question say, “I’m going to ask my doctor about this.”
It becomes a partnership among the patients, the researchers, the institutions, the clinicians, and all the stakeholders. Everyone’s ultimate goal is to increase positive health outcomes and help the community become stronger and healthier. They want families to grow stronger and people to have hope.
Neely Williams, a community partner consultant at the National Institutes of Health, is a patient co-investigator for the PCORnet Phase I and Phase II Mid-South Clinical Data Research Network and the patient co-principal investigator for the PCORnet Bariatric Study. She is also the Pastor of Community Concerns at the New Unity Church in Nashville, Tennessee.