Engaging Patients and Families in Research

Next week (March 20th) on #hcldr we are going to explore patient engagement in research. We will be joined by special guests from the BC SUPPORT Unit and the Michael Smith Foundation for Health Research in British Columbia, and Dalhousie University and IWK Health Centre located in Halifax, Nova Scotia.

  • Andrea Bishop, PhD, Postdoctoral Fellow, Strengthening Transitions in Care, IWK Health Centre — @ABishopPhD
  • Janet Curran, RN PhD, Associate Professor, School of Nursing Dalhousie University and Clinician Scientist, Strengthening Transitions Care, IWK Health Centre — @STIPC_Lab
  • Bev Holmes, PhD, President & CEO of the Michael Smith Foundation for Health Research — @msfhr
  • Colleen McGavin, Patient Engagement Lead, BC SUPPORT (Support for People and Patient-Oriented Research and Trials) Unit — @BCSUPPORTUnit

As authors of newly-published papers in the Healthcare Management Forum, they are joining us to share lessons learned about engaging patients as partners in health research.


Blog post by Andrea Bishop and Lori Last

Researchers across Canada are increasingly interested in engaging patients as partners in health research, recognizing the potential to improve the relevance and quality of the research. This interest is spurred in part by Canada’s national Strategy for Patient-Oriented Research (SPOR), which defines patient engagement as meaningful and active collaboration in activities such as governance, priority-setting, research conduct and knowledge translation.

In this blog and in our upcoming tweetchat, we want to share the lessons we’ve learned when engaging patients, community and other partners in the research process. We bring perspectives from across Canada (British Columbia on the west coast and Nova Scotia on the east) and across the continuum of care (adults with heart failure who are managing their condition from home (http://journals.sagepub.com/doi/full/10.1177/0840470417741712) and children and their parents in an acute care hospital (http://journals.sagepub.com/doi/full/10.1177/0840470417744568). Despite the differences in our projects, we’ve observed some common themes, lessons and challenges as we strive to engage patients in our work in a respectful and meaningful manner.

The first challenge is recruiting patients or community partners. There are many different ways patients might choose to be involved in a research project, from helping to develop research questions and promoting the research project to helping analyze the data.  Starting off with a clear and shared idea of individual roles and responsibilities is critically important. We’ve learned through experience that while it might be “easier” to recruit a patient you know and have worked with before, it can mean missing out on diverse perspectives that can enrich your work. How do we ensure a diversity of perspectives?

Once a patient has committed to taking part in a research project, they need to be supported to make the best contribution possible. That support can take many forms, from covering parking and child care expenses and payment for the time they invest in the project to emotional support when patients share potentially traumatic and painful experiences. These can be significant issues, particularly for research projects that might require a bigger time commitment from the patient. How do we keep engagement feasible and meaningful?

Successful patient engagement takes more than just the commitment of individuals on a research team. Researchers and the organizations they work for need support to do patient engagement, evaluate it and define best practices. Many researchers are doing this work under the umbrella of the SPOR Patient Engagement Framework  and in partnership with regional centres called SUPPORT Units that are providing on-the-ground services for research teams across Canada. This pan-Canadian approach will ensure that we share and build upon lessons learned in other jurisdictions.

As researchers and patient partners who are committed to advancing patient engagement, we admit we are doing much of our work organically and we’re learning as we go. There is a lack of evidence, guidance and practical tools to support those of us who want to do patient engagement well. We are keen to share what we have learned on our patient engagement journey to date but we also want to learn from the #hcldr community. Both articles mentioned in this blog post are available at http://journals.sagepub.com/home/hmf. They provide great background to this week’s #hcldr chat, so give them a read if you have a chance.

Join us for the weekly #hcldr tweetchat on Tuesday March 20 at 8:30pm EDT (for your local time click here) when we will discuss the following patient engagement related topics with special guests @msfhr, @BCSUPPORTUnit, @STIPC_Lab, and @ABishopPhD :

  • T1 How can organizations better recruit patients for research? What tools could they use? What information could they share?
  • T2 What can researchers and staff do to ensure that patient engagement in research is meaningful?
  • T3 How would you define successful patient involvement/engagement in research? What metrics?
  • T4 What best practices from other industries should healthcare researchers adopt when it comes to patient recruitment and engagement?


“Engaging patients as partners in health research: Lessons from BC, Canada”, Bev J Holmes, Stirling Bryan, Kendall Ho, Colleen McGavin, Healthcare Management Forum, 1 February 2018, http://journals.sagepub.com/doi/full/10.1177/0840470417741712,  accessed 13 March 2018

“Partnering with parents to advance child health research”, Janet A Curran, Andrea Bishop, Jill Chorney, Lauren MacEachern, Rebecca Mackay, Healthcare Management Forum, 3 February 2018, http://journals.sagepub.com/doi/full/10.1177/0840470417744568, accessed 13 March 2018


One comment

  1. Connie Rufenbarger · · Reply

    This looks like a wonderful endeavor. Patients and patient and public engagement are the key to the future of research. I encourage you to refer to the Komen Tissue Bank- www. Komen Tissuebank. Over 5,000 women with no sign of breast cancer have donated breast tissue via core biopsy , blood and detailed personal histories to create the first biorepository of true normal healthy breast tissue to a bank that is available to researchers around the world. They donated with the understanding that they would get no personal.
    The research being done with the tissue is breaking new ground in record time by supplying a normal control for research.
    It is a tribute to the generosity of women and the PI Dr. Anna Maria Storniolo.
    This project is a testimony to the public’s right to make informed decisions for research.

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