The idea of PaCER began 12 years ago when a group of disgruntled seniors from the Kerby Centre of Excellence in Calgary approached Nancy Marlett about the negative image being portrayed about seniors in geriatric and gerontology literature. They had decided to challenge the predominant research assumption that being older was defined by “burdens;” they wanted to do their own research to contest that notion. Several grants were cobbled together, including a grant from the Canadian Institutes of Health Research. Over 150 seniors in Calgary and rural settings participated in a day-long session to co design the topic and the process for the research. They chose to learn about research, trying out different methods in small groups with a mentor.
The groups decided to focus on resilience because, as one of the seniors said, “researchers are making it just another thing I have to worry about not having enough of” or as another remarked “if we’re not careful, we will be tested and put into treatment for having enough resilience.” They chose to learn how to conduct research by researching resilience in six theme groups. This gave us a chance to test out a number of qualitative methods. The seniors, much to the surprise of the funders and professionals, learned how to conduct research on resilience. They presented at a national gerontology conference and published a paper on a seniors perspective about resilience as social capital that challenged the dominant view of resilience as a personality characteristic. After the project they worked with Nancy to write a book about their experience so others could learn to do their own research.
The group gains momentum
When Nancy was presenting the research findings about training seniors to conduct research to faculty members at the University of Calgary (UCalgary) medical school, two of the audience approached her and asked if she could teach patients to do research to fill in the large gaps in clinical pathways. A grant application was submitted for a national funding opportunity designed to find new ways of engaging patients in health care and we were off and running.
The grant required that the research be led by senior leaders in Health systems to ensure that the research was implemented once complete. Two of the directors of Alberta Health Services Strategic Clinical Networks (SCNs) stepped up and a powerful team was formed, consisting of leaders of from these SCNs, health researchers and faculty members who had worked on the Grey Matters project. We set off with the Grey Matters curriculum, and belief that patients could be taught to conduct quality research and to take up new roles in the SCNs.
Blazing a trail
15 Patients with arthritis (the first target of the grant) were recruited and we set out together to make sense of this new patient engagement mandate, to train patients to engage other patients in research to provide a new research tool for the emerging SCNs. Many dropped out of the first co-hort – it was too strange, too hard, too long-- but a second co-hort was in the wings interested in the results produced by the pioneers. We trained these first two cohorts in a year-long internship with the support of SCN members who introduced the interns to the SCNs, to health research and planning, and then the die was cast. It had ignited an interest in this new approach to engagement: research by patients through engaging other patients and carers as co- researchers. The results of the internship projects were being used to inform policy and practice change and it was decided that we had to continue.
Growth through struggle
The next two years were very challenging. Although we trained researchers and a clearly outlined method, we had neither infrastructure nor funding to support the internships or the research being requested. There were no traditional grant sources or funds for such a disruptive idea and it was disruptive. Researchers were skeptical; clinicians were surprised; educators were unsure that such an innovative process would be welcome. We decided to offer research teams (SCNs, health agencies, clinics) small research support units. These were:
low cost, covering just the PaCER researcher salaries
low risk because we provided infrastructure to hire and pay researchers, and supervision of research quality
high impact: the research resulted in publications, changes in policy and practice and led to further research grants
In addition to conducting research the SCNs sponsored the third cohort in the internship training and a group of researchers and health agencies sponsored the internship groups in the fourth cohort.
Today we are a recognized innovator of new engagement methods in health research. We have a board structure that oversees the expanding research contract business (PaCERinnovates) and an emerging contract unit to help with specific aspects of the PaCER method (PaCER Inc.): co design, interviewing and group research, and implementation supports. Our competency-based curriculum combining theory and practice of patient engagement is now a Certificate program delivered through UCalgary’s Continuing Education. Our most recent graduates, June 2019, are the 6th co-hort to complete our training and we are embarking on our 7th — scheduled to graduate in January 2020.
Our story continues,… so please stay tuned for announcements and exciting news and developments from our interns and program sponsors through PaCER’s blog and social media platforms!
Dr. Nancy J. Marlett,
Director and Founding member, PaCER