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Understanding patients’ experiences as partners in research
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Scientific Study Title:
Advancing Integrated Knowledge Translation: Understanding Patients’ Experiences as Partners in Patient-oriented Research
Start Date:
  • 2019/06
End Date:
  • TBA Why We Did This Research? Patient engagement in research (PEIR) is a new way of doing health research where patients and members of the public become part of the scientific research team. PEIR is not about patients being participants or subjects to be studied by researchers, but becoming partners in shaping what we research, and how we do it. This new approach better connects scientific research to the everyday realities, problems, and concerns of people living with the diseases and medical conditions being studied. PEIR is part of a change in the healthcare system to make what matters to patients a bigger priority. For many patient partners and researchers, PEIR is a new and different way of doing things, and this can be challenging. In this study we want to understand how patients who become involved in research teams deal with and adapt to the challenges they face in their new role. If we understand how and why it may be difficult for patients to be partners in research, we can have a better idea of how to make it easier.
Research Category
Tags
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Linda Li
Senior Scientist, Implementation Science, BSc(PT), MSc, PhD, FCAHS
Nick Bansback-Website Headshot-400x400
Nick Bansback
Research Scientist, Health Economics, MSc, PhD
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Alison Hoens
Knowledge Broker, MSc, BScPT
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Catherine Backman
Senior Scientist Emeritus, Rehabilitation, PhD, FCAOT
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Jenny Leese
MA, PhD, Post-Doctoral Fellow
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Stephanie Therrien
Research Coordinator, BA

Methodology

Execution of Research

  1. We will develop a tool that will help patient partners choose a research project to become involved with.
  2. We will evaluate how effective this tool has been in helping patient partners make decisions that they are satisfied with.
  3. We will interview patient partners on a regular basis over a year to learn about their experience as part of the research team in the projects they have chosen.

Who is involved?

Involvement

We will need 63 participants for our study. Eligible participants will be patients interested in being matched as patient partners to a research team doing health research in British Columbia. Participants who have chosen a project will participate in three interviews over the course of a year, at Months 4, 8 and 12 about their experiences as a patient partner. We are also partnering with patients on our research team. Our group of patient partners consists of a balance of women (Ms. Egan and Ms. Mytopher) and men (Mr. Loftsgard and Mr. Loo), as well as diversity of age, diagnosis/health conditions, and geographic locations.

External Partners & Contacts

Kent Loftsgard, Sunny Loo, Sherri Mytopher, Dorothy Egan (Members of BC SUPPORT Unit Patient Council)

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