Including the Patient Voice to Improve Canadian Health Care

Ensuring that research incorporates the perspectives of patients with lived and living experience and views them as equal partners in the research enterprise is critical to having a health care system reflective of the priorities of patients, their families, caregivers, and community members. This improves the quality of care and the provision of health services for Albertans and Canadians.

While the PaCER program is based in Alberta, students come from all over Canada to learn the theory and practice of patient-oriented research or to hone their existing research skills. The cohorts are sponsored by various stakeholders including health care organizations such as Alberta Health Services and/or academics. The sponsors typically provide $45,000 to support the cohort. PaCER participants do not pay tuition, which removes financial barriers and fosters richer and more nuanced research approaches and results. PaCER students also have access to University of Calgary resources like the library and IT support while working on their projects.

PaCER cohorts are representative of their diverse communities – they reflect various patient experiences and areas of health. Participants are from many different ethnic backgrounds, genders, and geographical locations (e.g. rural) and address critical health care concerns such as irritable bowel syndrome, long COVID, and maternal health. Truly, diversity is woven throughout the program.

One priority of the PaCER program is to decolonize health care research. Several Indigenous cohorts have gone through the program and gave insight on their experiences with the health care system. PaCER staff continue to work to build relationships and trust with Indigenous People. This fosters a health care system that reflects the voices of Indigenous People. Another cohort, sponsored by faculty from McMaster University, focused on maternal health and is composed of women from different ethnic backgrounds and approaches to maternal health.

PaCER not only receives national recognition but is acknowledged internationally. While the focus of PaCER is on Canadian health care issues, AbSPORU staff are providing advice to international groups on the ins and outs of conducting patient oriented research. PaCER leadership, for instance, is providing advice to international groups such as the European Patients Academy on Therapeutic Innovation (EUPATI).

PaCER promotes the patient voice and experience as not only a valuable component of research, but as key to ensuring that health care decision-making reflects these experiences. PaCER graduates become active patient partners, advisors and advocates. Some now hold senior positions on advisory councils while others continue as active research partners on local, national and international projects. One graduate of the program is working in IMAGINE SPOR and is exploring innovative research methodologies and communications approaches such as digital storytelling.

The PaCER program illustrates the impact of strategic partnerships like the one between AbSPORU and the University of Calgary. AbSPORU provides scientific oversight and operational support while the University of Calgary Continuing Education delivers the certificate and training program, giving participants access to the University of Calgary resources.

The PaCER program allows patients to take an active role in the research being conducted on their health, building trust with patients and communities.