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Understanding Patients’ Experiences as Partners in Patient-oriented Research

 

Scientific Study Title:  Advancing Integrated Knowledge Translation: Understanding Patients’ Experiences as Partners in Patient-oriented Research

 

Principal Investigator:          

Linda Li, PT, PhD (UBC), Erin Michalak PhD (UBC) (co-lead)

 

Study Start Date: 

2019/06  

 

Study End Date: 

TBA

 

Why do 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.

 

What will be done?

  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? 

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.

 

Co-Investigators:

Sterling Bryan, Professor, University of British Columbia, School of Population and Public Health, Faculty of Medicine

Nick Bansback, Associate Professor, School of Population and Public Health, University of British Columbia, Research Scientist, Arthritis Research Canada

Alison Hoens, Physical Therapy Knowledge Broker, University of British Columbia, Department of Physical Therapy, Faculty of Medicine

Catherine Backman, Professor, Occupational Science & Occupational Therapy, University of British Columbia, Senior Scientist, Arthritis Research Canada

Laura Nimmon, Assistant Professor, University of British Columbia, Department of Occupational Science and Occupational Therapy

 

Arthritis Research Canada Trainees:

Graham Macdonald, PhD Candidate, University of British Columbia, Department of Rehabilitation Sciences, Faculty of Medicine

Clayon Hamilton, Postdoctoral Fellow, University of British Columbia, Department of Physical Therapy, Faculty of Medicine

Jenny Leese, PhD Candidate, University of British Columbia, Department of Rehabilitation Sciences, Faculty of Medicine

 

Research Staff:         

Stephanie Therrien, BA, Research Assistant

 

Patient Partners:     

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

 

Funding Agency:

N/A

 

How do people get involved?

 If you would like to take part in this study or seek more information, please contact:

Stephanie Therrien, stherrien@arthritisresearch.ca, 604-207-4053

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