Patient Research Partners

If you would like to receive additional information on becoming a Patient Research Partner, please email the OMERACT Secretariat, Shawna L. Grosskleg.

Patients Add Power to Research Initiatives

Nobody knows how arthritis changes your life better than the people who have the condition. Recognising this, OMERACT has Patient Research Partners fully integrated into each stage of the OMERACT process. The involvement of patients has been based on:

  • The recognition that patient involvement strengthens outcomes research in rheumatology; the contribution of patient research partners to defining important outcome measures, such as minimum clinically important difference, recognizing domains of concern, such as sleep and fatigue, and ensuring feasibility of assessments, such as in the tolerability of MRI scanning times, has been manifest.
  • The face validity of outcomes development which clearly incorporates the patient perspective; regulatory authorities (e.g. US FDA) require such involvement.
  • An intention to ground theoretical discusses in the "lived experience" of arthritis and, in concepts, which can be readily communicated to patients to help with therapeutic decision-making. Parallel patient reported outcomes measures related to the personal life impact of diseases and their treatment, and systems to help patients integrate evidence into personal health care decisions have emerged as an important area of development.

Click here to view article in The Rheumatologist.

Guiding Principles for Patient Research Partner Participation in OMERACT

This is a guideline for inviting patient research partners in OMERACT projects, and provides advice how to obtain optimal benefit from their inclusion. Section 1 presents the principles of patient involvement; Section 2 describes different levels of practical patient involvement; Section 3 discusses the selection and support of patient research partners. Click here to view or download PDF.

Patients' Expectations and Experiences at the OMERACT 2010 Conference
Until recently, active patient participation in outcome research has been limited. In-depth interviews with new OMERACT patient participants has provided insights to help improve the collaboration between patients and researchers. Click here to view or download PDF.

OMERACT Glossary
The Patient Research Partners Group has produced an OMERACT Glossary which is useful not only for patients but for professional involved in OMERACT. Click here to view or download PDF.

Sponsorship of Patient Research Partners
We would like to secure, enhance and further develop patient involvement in OMERACT. Establishing an OMERACT patient participation fund will ensure that the resources are available to build on this cooperation between patients and researchers – working together we can make a real difference. Click here to view or download PDF.

project

Maarten de Wit

PhD

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Laure Gossec

MD, PhD

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Rodney Hughes

MB BCh, MA, MD, FRCP

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John R. Kirwan

BSc, MD, FRCP

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Pam Montie

 

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Pam Richards

 

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Marieke Voshaar