Patients Helping Shape Research: How PCORnet and PEDSnet Are Making Studies Better
Key Words: patient voices, PEDSnet, PCORnet, research partnership, families, clinical studies
This study explains how a national research network called PCORnet is helping patients take part in health research. PCORnet brings together many hospitals and clinics and uses health data from over 47 million patients to improve care.
Within PCORnet, the PEDSnet network focuses on children and families. PEDSnet includes Family and Youth Advisory Councils so parents and young people can share their ideas and help guide research.
The study shows that when patients and families work as partners with researchers, studies are more helpful and easier to understand. The authors also say research should be “careful, kind, and connected” so families feel respected and supported.
Takeaways
Why does this matter?
- Research works better when patients and families help design and guide studies.
- It helps make sure studies focus on what matters most to real people.
What does this mean for patients and families?
- You may have more chances to share your voice in research, especially in networks like PEDSnet.
- Studies may become more caring, clear, and helpful for you and your family.
Citation:
Merritt, Greg PhD*; Zebrick, Ava MSHCM†; Stephens, Bill MSHCM‡; Goytia, Crispin MA§; Bronson, Melissa MA‖; Zemon, Nadine RN¶; Williams, Neely MDiv, EdD(c)#; Stowe, Shirley RN**. Patient Voices Leading Change: A Call to Action for Careful, Kind, and Connected Patient-Partnered Research in PCORnet®. Medical Care 64(3S):p S191-S195, February 2026. | DOI: 10.1097/MLR.0000000000002264