Assessing Meaningful Patient Engagement in Research

Study Title: Patient Engagement in Research Scale (PEIRS) Study Principal Investigator: Clayon Hamilton, PhD. Postdoctoral Research Fellow, Faculty of Medicine, University of British Columbia Study Start Date: 2016 / Study End Date: TBA

Why do this research?

This research will create and test a measurement tool, the Patient Engagement in Research Scale (PEIRS). The PEIRS will assess patients’ perceptions of being meaningfully engaged as Patient Research Partners in health research. The practice of patient engagement in research is a change from the usual way of doing health research, and it is becoming increasingly valued and required. Patient engagement in research occurs when patients take a role in conducting tasks and making decisions in research governance and at any stage in the research process, from planning the research through to the dissemination, the use, and assessment of the use of the research findings. Patients who engage in research bring their important experiences of living with health issues and using health services. Their experiences can make the research more relevant to the needs of patients. Patient engagement is meaningful when the research process demonstrates certain values, such as mutual respect and co-building of knowledge, which benefits the patients, researchers, research funders. Presently, there is no measurement tool to assess the extent to which patients are meaningfully engaged in research. To determine the best ways of engaging patients in research, the Patient Engagement in Research Scale (PEIRS) is needed to assess the success of different ways of engaging patients in research.

What will be done?

1. Find out what patients view as the key components of meaningful patient engagement in research.
2. Develop the PEIRS using what patients indicate are the most important components of meaningful patient engagement in research.
3. Assess the PEIRS to ensure it can detect different degrees of meaningful patient engagement in research.

Who is funding the research?

Dr. Clayon Hamilton is funded by a post-doctoral trainee award from the Michael Smith Foundation for Health Research.

How do people get involved?

For more information, please view the recruitment notice here or contact: Clayon Hamilton, PhD. Postdoctoral Research Fellow Phone: 604.207.4031 Email: peirs@arthritisresearch.ca

Who is on the research team?

Co-Investigators: Dr. Linda Li, Professor, University of British Columbia Alison Hoens, Clinical Professor and Physical Therapy Knowledge Broker, University of British Columbia   The patients on our team have several years of combined experience engaging in research related to their health issues. Arthritis Patient Advisory Board Patient Research Partners: Annette McKinnon Kelly English Shanon McQuitty   Research Assistant: Tara Azimi

Publications

Hamilton CB, Hoens AM, Backman CL, English K, McKinnon AM, McQuitty S, Li LC. An empirically based conceptual framework for fostering meaningful patient engagement in research. Health Expectations. To access publication, click here. 

Hamilton CB, Hoens AM, McQuitty S, McKinnon AM, English K, Backman CL, Azimi T, Khodarahmi N, Li LC. Development and pre-testing of the Patient Engagement In Research Scale (PEIRS) to assess the quality of engagement from a patient perspective. PLOS One. (DOI: 10.1371/journal.pone.0206588) 13(11):e0206588, 2018. To access publication, click here.

Workbook to Guide the Development of a Patient Engagement in Research (PEIR) Plan. View PDF here.