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 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.

Title ArthritisPower, formerly AR-PoWER (ARthritis Partnership with Comparative Effectiveness Researchers)
Network design Patient-Powered Research Network (PPRN)
Lead partner Global Healthy Living Foundation (GHLF)
Other partners CreakyJoints
University of Alabama at Birmingham (UAB)
Participants 17,965
Area(s) of focus Patients with rheumatic or musculoskeletal diseases

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.

Population (as of 03/31/19)


  • 88% white
  • 4% mixed race
  • 3% black
  • 2% American Indian/Alaska Native
  • 1% Asian
  • 1% no information
  • 5% Hispanic or Latino


  • 18% 18–44
  • 63% 45–64
  • 17% 65 or older
  • 1% no information

Sex assignment at birth

  • 90% female
  • 9% male
  • 1% other

Gender identity

  • 90% female
  • 9% male
  • 1% other

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.


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.

More to Explore...

Project Information

Seth Ginsberg, BS
Global Healthy Living Foundation
$2,070,219 *
AR-PoWER (ARthritis Partnership with Comparative Effectiveness Researchers) PPRN

Key Dates

March 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