Melissa Bronson is a caregiver by nature. Long before her son was diagnosed with a rare kidney disorder, she was working as a special education teacher responsible for supporting students with learning differences. Now, as a Patient Partner on the PCORnet® Steering Committee, Melissa is activating her caregiving insights to improve national-scale, comparative clinical effectiveness research powered by PCORnet®. We spoke with Melissa as part of our 10-year anniversary celebration to hear what she values most about PCORnet, how PCORnet has evolved over this last decade, and her vision for the next 10 years.
How did you get involved in clinical research?
Five years ago, my son was diagnosed with a form of glomerular disease, which reduces the kidneys’ ability to maintain the right balance of proteins and red blood cells in the bloodstream. Each glomerular disease is a bit different, and the unmet need in understanding these differences makes research and drug development for these disorders challenging – with so many different symptoms, what works for one may not work for another.
Early into my son’s diagnosis, it was clear patients and caregivers are important to helping research teams better understand these conditions so they can conduct effective trials. That is when I learned about the Glomerular Learning Network (GLEAN), a collaborative of nine pediatric institutions working to improve the health of children like my son through clinical quality improvement and research. GLEAN is part of PEDSnet, a PCORnet® Clinical Research Network.
What inspired you to serve on the PCORnet® Steering Committee?
The more I learned about PCORnet through GLEAN, the more I saw how much study teams using PCORnet integrate the patient and caregiver voice into research. I was inspired by the opportunity to not only collaborate directly with the principal investigators for studies being conducted, but to do so within a culture that truly values my input and puts it to action.
From my very first day on the Steering Committee, I was supported by the full team. The Steering Committee leadership comes to all the Patient Partners after our meetings and asks if we have any additional feedback we did not get to share; they also consistently seek out our opinion on how the team can improve. Their support is helping me be more confident in sharing my voice and using my role to improve the research process.
This year, we are celebrating 10 years of PCORnet. How do you think the PCORnet infrastructure has impacted patient-centered research?
If someone had predicted ten years ago that I would be welcomed onto the Steering Committee for a national resource that supports the conduct of comparative clinical effectiveness research, I would not have believed them. Not only because my son’s condition had not yet been diagnosed, but also because incorporating the patient’s perspective into the clinical research was not common practice in those days. The patient-centered requirement for all studies powered by PCORnet® has catalyzed the idea that patients need to have a role in the design and conduct of research that is intended to benefit us.
PCORnet® Network Partners are also continuing to push boundaries in this area. They have expanded the Steering Committee from three to eight Patient Partners, meaning we now have an equal vote with the academic committee members in our meetings. Patient Partners participate in other relevant meetings, too, including the PCORnet® Data Committee, which I recently joined. Step by step, we are getting closer to bringing that patient voice into every aspect of the research process, which is exciting progress.
What do you hope research powered by PCORnet® achieves in the next 10 years?
The broad scope of PCORnet data resources means we can already capture many populations that are frequently excluded from traditional research, and I see a lot of promise in continuing to expand the reach of PCORnet. I would also like to see more stakeholders brought into the research fold, including people like nurse practitioners who would bring a unique perspective.
What advice would you give to other patients or caregivers who may be interested in getting involved with PCORnet?
Partnering with research teams can seem intimidating, but the truth is, your perspective is incredibly relevant and needed. I would say that before you decide it is not for you, just try it. You might be surprised at how validating and empowering it is to use your voice to improve the lives of others. More doors are always opening to lend research support, so reach out to your healthcare institutions to see how you can get started.