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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.

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.

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.

Glossary

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.

Overview

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 toward the PPRN goals of developing and optimizing research and engagement infrastructure capacity to

• Establish a governance structure that fully engages patients and other stakeholders for the purposes of contributing to research
• Create a data infrastructure conducive to the ongoing collection of patient-reported data
• Meaningfully engage patients, caregivers, families, and community members in the research process, including identifying and recruiting participants for clinical trials and other research studies
• Lead or partner in the conduct of comparative effectiveness studies responsive to the research priorities of their communities

Network Infrastructure

PRIDEnet is a PPRN comprising sexual and gender minority (SGM) people, including members of the lesbian, gay, bisexual, transgender, and queer (LGBTQ) communities. PRIDEnet was created to be a mechanism to enable these medically underserved and socially marginalized populations to 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 prioritizing topics and research questions. In addition, 41 health clinics, community centers, and advocacy and education organizations nationwide are part of PRIDEnet’s Community Participation Consortium.

Network Governance and Operations

PRIDEnet’s primary data-gathering mechanism is the PRIDE Study, a national, longitudinal cohort study of SGM people’s physical, mental, and social health. During a pilot phase, PRIDEnet created an iPhone app that allowed participants to complete the eligibility screening, informed consent, and study enrollment processes. Surveys in the app collected physical, mental, and social health data including healthcare experiences and patient-reported outcomes. The team also used the app to collect health-related topics and research questions proposed by participants. The app was later transformed to a web-based research portal that is accessible from any device when connected to the internet.

Researchers may submit proposals for ancillary studies to answer research questions with data collected from the PRIDE Study or administer their own survey to the PRIDE Study participants. Members of the Participant Advisory Committee and the Research Advisory Committee review research proposals based on criteria such as demonstration of significant community engagement and creation of community-accessible dissemination products. PRIDEnet’s Research Advisory Committee consists of five clinician-investigators who develop, conduct, and disseminate studies by PRIDEnet and external researchers. PRIDEnet’s Patient Advisory Committee—composed of 12 SGM community members—reviews and gives feedback on research questions, strategy, and materials.

PRIDEnet refined its research processes to be more efficient in several ways, including creating

• An online proposal and review system to streamline the ancillary study proposal process
• A custom web platform 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

Stakeholder Engagement

Because many SGM people experience social stigma, discrimination in healthcare, and exclusion from clinical trials, PRIDEnet established its Community Partner Consortium to increase SGM participation in research. PRIDEnet works to understand and support partners’ health-related missions while simultaneously building the capacity to engage and recruit SGM people for research studies. For example, the PRIDEnet team used the iPhone app to elicit health research priorities from the SGM community, resulting in more than 3,500 suggestions for health topics and more than 60,000 votes to help prioritize the topics.

PRIDEnet also conducted community listening sessions to gather opinions and experiences of SGM people as they relate to the importance of health research, health issues, and possible solutions to health problems. PRIDEnet uses these sessions to ensure that it is conducting research that is responsive to the experiences of SGM people.

PRIDEnet trains ambassadors to educate community members and to encourage participant engagement and enrollment in research. Ambassadors conduct outreach at community events, hold in-person and online information sessions, and create social media content. PRIDEnet also provides in-person and online cultural competency and humility trainings to help researchers and others effectively enroll SGM people into studies.

PRIDEnet’s Participant Advisory Committee consists of 12 SGM community members who review and provide feedback on research questions, research strategies, research proposals, public-facing communications, recruitment materials, and dissemination materials. The Participant Advisory Committee meets monthly via teleconference and at least once a year in person.

Demographics and Research Capacity

The PRIDE Study has enrolled 13,100 participants as of January 31, 2019. The study uses a web-based research portal to collect demographic, physical, mental, and social health data including healthcare experiences and patient-reported outcomes from participants.

While a Partner Network in PCORnet, PRIDEnet participated in three clinical trials, five observational studies, and one methodology study.

Future Opportunities

PRIDEnet developed a digital research platform to conduct research quickly and cheaply in partnership with SGM people. This platform can be used as a model for other groups interested in conducting digital health research. PRIDEnet will maintain and advance its infrastructure with funding from the National Institutes of Health, Stanford University, and investigators who pay to conduct ancillary studies with the PRIDE Study.

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