Creakyjoing.com, one of the most popular arthritis organizations on the Internet, is a part of the Global Healthy Living Foundation. GHLF has been awarded a PCORI contract to develop a PPRN or patient-powered research network as a part of the National Patient-Centered Clinical Research Network (PCORnet) working with the University of Alabama's Center for Education and Research.
What this means is that patient governors are being selected to help in the following ways:
• Advisor: through discussions on monthly conference calls, at the annual
Patient Governor Group conference, and informally throughout the year, a
Governing Member will serve as a sounding board for the GHLF/CreakyJoints
staff and health researchers by representing the viewpoint of AR-PoWER
patient/members specifically and individuals affected by inflammatory
arthritis generally.
• Advocate: a Governing Member will serve as an advocate for the value of
patient participation and leadership in rheumatology research.
• Ambassador: as an informed insider, a Governing Member will serve as an
ambassador for AR-PoWER to other individuals affected by inflammatory
arthritis, their caregivers, healthcare providers, and to the wider community.
• Research Collaborator: a Governing Member will work with fellow Governing
Members, other patients, and with professional researchers to participate in
one or more of the following research activities: outreach and recruitment,
identify topics for research, set priorities for research, frame study questions,
develop research protocols, implement research activities, review and
interpret research results, and disseminate or implement research findings.
I've been honored as one of these Patient Governors, and am looking forward to writing here about this research project, as time goes by.
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