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The Arthritis Newsletter

Spring 2016

Does Patient Engagement in Research Matter?

By Shanon McQuitty and Lianne Gulka

depression-and-arthritis



Dr. Clayon Hamilton is currently a Postdoctoral Fellow in knowledge translation, in the Department of Physical Therapy at the University of British Columbia. Dr. Hamilton’s work has focused on musculoskeletal health, with a particular interest in measuring illness perception and behaviours in people with knee osteoarthritis. Dr. Linda Li recruited Dr. Hamilton to Arthritis Research Canada (ARC) based on his interest in her research focused on physical activity counselling interventions for people with arthritis.

 

Measuring Patient Involvement in Research

Dr. Hamilton will work with patients to develop a measurement scale, the Patient Engagement in Research Scale (PEIRS) to determine how effective we are as patients involved in the research process.

 

The inspiration for his current study came out of the belief that the patient perspective should always be considered in research, especially in the development of tools for patients. Dr. Hamilton believes that at times developers and researchers do not necessarily reflect the needs of the patient. His motto in the development of PEIRS is “with patients, for patients”. The PEIRS will evaluate the extent to which patients are meaningfully and effectively engaged in health research.

 

In the initial development, the study will be driven by patient partners with arthritis from the Arthritis Patient Advisory Board (APAB) and the Canadian Arthritis Patient Alliance (CAPA) followed by other patient groups, especially those with chronic diseases.

 

Three Year Research Plan

 

  • Phase 1 – developing a conceptual framework and a bank of items reflecting meaningful and effective patient engagement in research
  • Phase 2 – selecting and preliminary testing of the items
  • Phase 3 – evaluating the validity and reliability of PEIRS

 

Patient-Researcher Partnerships

Dr. Hamilton believes this study will lead to continued development and increased understanding of the experience of patient partners in research. Ultimately, the goal is to optimize the quality and mechanism of the patient-researcher partnership by measuring the degree to which patients are successfully engaged in the research process.

 

Dr. Hamilton looks forward to working in partnership with APAB and other patient groups to ensure this outcome measure reflects patients’ values and experiences as research partners because after all, It Is About Us!

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