I continue to discover partnerships in Canada that include patients and families in important roles in research and health care improvement. After publishing a post last month about a special patient-focused issue of Healthcare Quarterly, I learned about another publication dedicated exclusively to the engagement of patients and community members in health care.
Engaging Patients in Health Research: The Ontario Experience includes reports from 17 demonstration projects that have patients and “service users” fully involved in research in the community. The projects are sponsored by the Ontario SPOR SUPPORT Unit or OSSU. SPOR (Strategy for Patient-Oriented Research) is a collaboration of public and private organizations, including the Canadian Institutes of Health Research, philanthropies, academic institutions, businesses, patients and clinicians, committed to the transformation of patients and families from “passive recipients of health services… into proactive partners” in research. That transformation requires evidence to inform changes to health policy. In pursuit of its mission, “moving what health researchers know into what health care providers do), SPOR engages patients and community members in research that guides policy and ultimately health care delivery throughout Canada. The Ontario Unitis a collaboration of 12 health research centers with a coordinating center that manages the unit’s extensive activities.
Similar initiatives to increase patient and community involvement in health research exist in the United Kingdom through the National Institute for Health Research and in the U.S. through the Patient-Centered Outcomes Research Institute.
Highlighting 17 projects in patient-oriented research
Engaging Patients in Health Research is a special issue of CMAJ, the peer-reviewed journal of the Canadian Medical Association. The issue’s 17 articles, an introduction and a closing reflection reveal the diversity of research projects that can be “patient-oriented.” The 17 projects include mental health, the health of indigenous populations and children, chronic diseases and a variety of issues centered in health systems: surgical care and treatment for hip fracture, primary care, medication access, and prehospital emergency medicine.The issue does not shy away from addressing real challenges faced by organizations and individuals who sincerely want to include patients and community members in research. In their introduction, members of the CMAJ’s advisory group for the issue describe some of the key difficulties faced by projects in the issue. Those challenges – timing, logistics, funding –are common barriers to research that become more complicated and more acute in the context of daily life in the real world. Researchers became aware that patients who are willing and able to participate in research may not always fully represent the population. For example, the experience of patients with chronic disease, full-time jobs or limited income, may need extra help or services in order to participate. And it’s especially important to include their experience and views.
It’s increasingly clear that the work of patient engagement is not a bucket or a silo. When patients and all members of the community are allowed to engage authentically in all aspects of healthcare, everyone benefits and performance improves. Much of healthcare is distinctly local, and we can all learn and gain inspiration from evidence that patient engagement is an international movement.