What could partnering look like?
As a patient partner, you often have all the expertise you need because of your experiences with a chronic condition, as a young adult, and as a user of healthcare/specialty care. Some projects may be looking for a patient partner who has more expertise in a certain area of research, such as interviewing, analysis, or a specific healthcare topic. Make sure to ask the researchers with whom you are partnering for clarity on what is expected of you, what ongoing communication will look like, and how the partnership will work.
If you would like to prepare yourself with additional terminology or knowledge on the research process, check out PCORI’s training on Research Fundamentals.
Roles for Patient Partners
- Brainstorming of research ideas
- Help design study
- Consider how to reach target populations
- Collect and analyze data (more advanced)
- Edit presentations and papers
- Disseminate findings to target populations
Red Flags to Watch For
- You are not the right patient due to identities but they still want you as a patient partner no matter what
- Being asked to attend many meetings
- Ghosted for long periods of time
- Do not get regular updates
- Not getting recognition for work
Being involved in research as a patient is fulfilling because I know that I could be helping someone just like me. I got into research because of my rheumatologist. She thought I had a lot to offer other patients and doctors. Participating in research is important to me because I enjoy helping others and being a part of something that could possibly change healthcare. My overall experience has been good and bad. Sometimes you feel like you are not getting the outcome you want, but most of the time, I am just grateful that I could be helping someone in the future.
How did it happen? Dr. Akinsete was the only black rheumatologist I was ever treated by, and she immediately changed my perspective on my overall health. In the beginning, I would not take my medication, but she was persistent on me being healthy. We related well; she helped me from scratch. One day she emailed me and said I would be a great writer in the newsletter NJ Pediatrics. She suggested I write from a patient perspective about why it is important to have POC doctors.
What did I do? I wrote about my experience at Montefiore Medical Center with and without Dr. Akinsete. I also acknowledged the fact that I had issues in every social determinant of health and that contributed to my demise in the beginning of my diagnosis.
Why did she ask me? Dr. Akinsete asked me because we can relate to each other. While getting to know me, she learned that I have helped write other articles and have participated in research since middle school by giving blood and trying different infusion therapies.
Pancy, YP AREA Patient Partner
Watch for the article: Akinsete A., & Brown P. (2022). Case Study: Importance of Diversifying the Pediatric Rheumatology Workforce. New Jersey Pediatrics, 18-20.
