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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 ARthritis Partnership with Comparative Effectiveness Researchers—branded by patients as ArthritisPower®—participated as Partner Networks in PCORnet.

PCORI funded ArthritisPower’s participation in PCORnet from 2015 to 2018. This report outlines ArthritisPower’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 participate in research studies
4. Lead or join in research studies that focus on the community’s priorities

Network at a glance

ArthritisPower is a PPRN that consists of patients with rheumatic and musculoskeletal diseases, or RMDs. RMDs cause pain in joints and bones and reduce range of motion. The PPRN was established in 2014 by the Global Healthy Living Foundation, or GHLF; CreakyJoints, a non-profit organization under GHLF that works to improve care for people living with arthritis; and the University of Alabama Birmingham, or UAB. The PPRN is a virtual network with patient members from across the United States.

How does the network operate?

ArthritisPower created an executive board and groups representing patients, researchers, and industry partners to lead the network.

To manage the network, GHLF recruited patients and developed the ArthritisPower app software. GHLF also worked with an oversight board to make sure researchers protect participants. UAB provided scientific and data management expertise for the network and specific projects.

ArthritisPower collects information through the app. Patients first sign forms to allow ArthritisPower to access their data, like health records and lab results. Patients then use the app to update data about their health, medicines they take, and other topics like pain and depression.

Researchers can apply to use ArthritisPower in three ways:

• Use data that patients update in the app about their health, medicines, or other topics.
• Send new surveys to patients through the app.
• Recruit patients to participate in a study.

ArthritisPower made its research process more efficient by working with an external oversight board and app developer.

How did the network involve patients and other partners?

ArthritisPower created a Patient Governance Group, or PGG, to help create new studies and spread the word about study findings. The PGG is made up of 10–12 patients. Any ArthritisPower patient participant may apply and interview to become a member of the PGG. GHLF staff and current or former members of the PGG then choose the new members. Members of the PGG review applications from researchers who want to use ArthritisPower to do studies. The PGG also advises leadership on how to recruit patients and improve the network. Each member of the PGG serves for three years to ensure that the PGG reflects current patient needs.

ArthritisPower’s PGG has monthly calls to review and give input on proposed research studies, learn new research methods, and receive updates. Members of the PGG also attend two- to three-day in-person meetings where they do team-building activities, attend educational sessions, and help decide on the rules for how ArthritisPower operates.

Patients can use the Send Feedback option of the app to submit comments to help make the app better. Patients can also create custom reports in the app to track their medicine use and health over time to share with their doctors. Patients can access monthly sessions led by researchers to learn about topics like pain management.

Who is in the network?

As of March 2019, 17,965 patients share data with ArthritisPower.

While part of PCORnet, ArthritisPower participated in 38 studies.

How does the network support future research?

ArthritisPower plans to keep doing research through sponsorships with companies and by applying for research grants.

ArthritisPower has relationships with other PCORnet networks to recruit new patients and try new ways to do research.

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 ARthritis Partnership with Comparative Effectiveness Researchers—branded by patients as ArthritisPower^®—participated as Partner Networks in PCORnet.

PCORI funded ArthritisPower’s participation in PCORnet from 2015 to 2018. This report outlines ArthritisPower’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

ArthritisPower is a PPRN made up of patients with rheumatic and musculoskeletal diseases, or RMDs. The PPRN was established in 2014 by the Global Healthy Living Foundation (GHLF); CreakyJoints, a nonprofit advocacy organization associated with GHLF that works to improve quality of care and access to care for people living with arthritis; and the University of Alabama at Birmingham (UAB) Center for Education and Research on Therapeutics of Musculoskeletal Disorders. The PPRN is a virtual network with patient members from across the United States.

Network Governance and Operations

ArthritisPower collects information from network participants in multiple ways. Participants first sign an electronic health record release and HIPAA authorization for the network to access their electronic health record data, lab results, and claims data. Participants also contribute longitudinal health and medication data through the ArthritisPower app and responses to a set of validated patient-reported outcome (PRO) measures for concepts like pain, fatigue, and depression. The project team can also push any survey to participants via the app’s integration with SurveyMonkey and other survey management platforms.

External researchers may partner with ArthritisPower in three ways:

• Query data from existing ArthritisPower measures, retrospectively or prospectively.
• Conduct ancillary studies where additional variables or measures are implemented and become part of the ArthritisPower database.
• Recruit participants for independent clinical trials or studies through the app’s Research Opportunities function.

ArthritisPower established an executive board and groups representing patients, researchers, and industry partners to lead the network.

GHLF and UAB staff worked together to establish and operate ArthritisPower. With responsibility for managing the network overall, GHLF recruited, engaged, and provided ongoing support to participants; corresponded with the Institutional Review Board (IRB); and developed and maintained app software. UAB provided scientific and data management expertise for designing and implementing the network and specific projects. To refine its research processes for efficiency, ArthritisPower worked with an external IRB and app developer.

Stakeholder Engagement

ArthritisPower’s Patient Governance Group (PGG) serves as a steering committee, which helps to develop and implement new studies and disseminate findings. The PGG is composed of 10–12 patient members of ArthritisPower who come from a variety of professional, geographic, and demographic backgrounds. All ArthritisPower patient participants are candidates for the PGG. Interested candidates are invited to submit a written PGG application and undergo a phone interview with GHLF staff and current or former members of the PGG, who then choose new members based on transparent selection criteria. Members of the PGG assess proposals from researchers seeking to access ArthritisPower data or recruit ArthritisPower’s participants into studies. The PGG also advises leadership on participant engagement strategies and network improvements. Each member of the PGG serves for a maximum term of three years to ensure that the PGG continues to reflect current attitudes and needs of the patient community.

ArthritisPower’s PGG participates in monthly conference calls where they review and provide input on proposed projects, learn new research methods, and receive updates on research projects. The PGG also attends a two- to three-day in-person meeting annually where they participate in team-building activities, research education sessions, and governance decision-making discussions.

Patients can contribute to the network by using the Send Feedback option of the app to submit comments and feedback about specific research projects and to improve the app’s usability and functionality. Patients can also create customized reports in the app to track their medication usage and PRO measure scores over time to share with their healthcare team. Patients can access regularly occurring researcher-led webinars that are tailored to patients’ interests. Webinar topics include pain management and diet.

Demographics and Research Capacity

As of March 2019, 17,965 patients share data with ArthritisPower.

ArthritisPower participated in 38 studies, including 14 cross-sectional, 8 prospective, and 1 retrospective cohort observational study; 3 randomized controlled trials; 2 qualitative studies; 1 descriptive analysis; 1 large simple trial; 1 secondary data analysis study; and 7 other studies.

Future Opportunities

ArthritisPower plans to maintain its research capacity by using its strong relationships with other institutions and research funders. The network maintains its infrastructure with support from corporate sponsorships and research grants.

ArthritisPower has established relationships with other PCORnet networks to expand its research capabilities and its ability to reach patients.