Results Summary

PCORI funded the development of PCORnet®, the National Patient-Centered Clinical Research Network, to make it easier and more efficient to conduct research. PCORnet is made up of Partner Networks that harness the power of large amounts of health data and patient partnerships.

Patient-Powered Research Networks (PPRNs) are networks operated and governed by patients, families, caregivers, and community members in close collaboration with clinical researchers, with the goal of shaping and conducting research to better serve their communities and improve their health outcomes. Several PPRNs, including PRIDEnet, participated as Partner Networks in PCORnet.

PCORI funded PRIDEnet’s participation in PCORnet from 2015 to 2019. This report outlines PRIDEnet’s achievements in building its research infrastructure capacity to

  1. Create ways to involve patients, families, and caregivers in decision making about the network
  2. Create a way to collect and share data reported by patients for research
  3. Involve patients, caregivers, families, and communities in the research process, including recruiting people to take part in research studies
  4. Lead or join in research studies that focus on the community’s priorities

Network at a glance

PRIDEnet is a PPRN made up of sexual and gender minority (SGM) people, including members of the lesbian, gay, bisexual, transgender, and queer (LGBTQ) communities. SGM people do not always have access to the health care they need. PRIDEnet was created to help SGM people participate in the clinical research process from beginning to end. PRIDEnet participants include more than 14,000 SGM people who participate in the PRIDE Study by contributing data and contributing to its forum. In addition, 41 health clinics, community centers, and advocacy and education organizations nationwide are part of its Community Participation Consortium.

Title PRIDEnet: A Participant-Powered Research Network of Sexual and Gender Minorities
Network design Patient-Powered Research Network (PPRN)
Partners University of California San Francisco
PRIDEnet Community Partner Consortium
Participants 13,244
Area(s) of focus Lesbian, gay, bisexual, transgender, and queer (LGBTQ) communities

How does the network operate?

PRIDEnet gathers data through the PRIDE Study. The PRIDE Study collects information from SGM people about their physical, mental, and social health. During a pilot phase, PRIDEnet created an iPhone app that allowed people to answer surveys for the study. People could also use the app to share topics or questions they thought were important to research. Later, the team moved the study to a website that can be used from any device that’s connected to the internet.

Researchers can propose studies that use data collected from the PRIDE Study, or they can request to have their own surveys sent to people in the PRIDE Study. PRIDEnet’s Patient Advisory Committee has 12 community members. The committee reviews and gives feedback on research questions and study materials. A Research Advisory Committee with five clinicians who are researchers plans and conducts PRIDEnet studies.

PRIDEnet made its research process more efficient by creating

  • An online system to collect and review outside requests for research
  • An online system designed to rapidly reach, recruit, and engage participants
  • The PRIDE Question Catalog, a searchable database of all questions used in the PRIDE Study
  • A system to alert PRIDEnet staff of new participant feedback from the PRIDE Study’s yearly survey

How did the network involve patients and other partners?

Because many SGM people experience social stigma, discrimination in health care, and exclusion from clinical trials, PRIDEnet established its Community Partner Consortium to increase SGM participation in research. The consortium includes health clinics and community organizations around the country. PRIDEnet works to understand and support partners’ health-related missions and build their ability to take part in research. For example, the PRIDEnet team used the iPhone app to ask the SGM community about health research priorities. People suggested more than 3,500 health topics and cast more than 60,000 votes to help prioritize the topics.

PRIDEnet also conducted community listening sessions to learn about the experiences of SGM people with health research, health issues, and possible solutions to health problems. PRIDEnet uses these sessions to ensure that it’s conducting research that is responsive to the experiences of SGM people.

PRIDEnet trains ambassadors to represent the project at community events, at online information sessions, and on social media. PRIDEnet also trains researchers and others on how to include SGM people in studies.

PRIDEnet’s Participant Advisory Committee meets monthly via teleconference and at least once a year in person.

Who is in the network?

The PRIDE Study has enrolled 13,100 participants as of January 31, 2019. The study uses a web-based research portal to collect information about patients and their physical, mental, and social health. While a Partner Network in PCORnet, PRIDEnet participated in three clinical trials, five observational studies, and one methodology study.



  • 72% white
  • 7% Hispanic or Latino
  • 6% mixed race
  • 2% Asian
  • 2% black
  • 2% other
  • 16% no information


  • 80% 18–44
  • 16% 45–64
  • 3% 65 or older

Sex assignment at birth

  • 51% female
  • 29% male
  • 20% no information

Gender identity

  • 31% woman
  • 29% man
  • 4% transgender male/trans man/female-to-male
  • 2% transgender female/trans woman/male-to-female
  • 5% genderqueer
  • 2% multiple gender categories
  • 4% other
  • 15% no information

How does the network support future research?

PRIDEnet developed a digital research platform to conduct research quickly and cheaply with SGM people. This platform can be used as a model for other groups interested in conducting digital health research. PRIDEnet’s work continues with funding from the National Institutes of Health, Stanford University, and researchers who pay to do studies using PRIDEnet data.

PRIDEnet continues to accept proposals from other PCORI networks and external organizations for research using data from the PRIDE Study.


Patient-Powered Research Networks (PPRN): PPRNs are operated and governed by patient groups and their partners and are focused on particular conditions or populations.

PCORnet: PCORnet is a network of networks that brings together patients, clinicians, researchers, and healthcare systems to share information and participate in research.

Journal Citations

Related Journal Citations

Project Information

Mitchell R. Lunn, MD
University of California, San Francisco
$2,146,683 *

Key Dates

January 2019

Study Registration Information

Journal Articles


Has Results
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: January 27, 2023