How do we engage patients to ensure their perspectives and experiences drive our work?

In the past, rheumatologists designing clinical trials in rheumatoid arthritis focused on reducing joint swelling and tenderness as the most important outcome. However, after engaging with patients, it became apparent that the fatigue associated with the disease is almost as important as the swelling and tenderness itself.

A project bringing together patients on dialysis, their caregivers and healthcare providers identified research on the causes and effective treatments of the itching that is associated with end stage kidney disease as an important priority. A review of research in dialysis patients identified that relatively few studies are focused on itching.

At a recent editorial meeting of Healthy Debate a physician suggested he might write an opinion piece about the impact of the July 1 switchover, the date that new medical residents start their rotations, on patient care. One of the patient members of the editorial board said, “Well, I’ve be in the ICU on a few July 1sts. Let me tell you what it feels like.”

We are in an era of greater awareness of the importance of involving patients in everything we do in healthcare. As patients are increasingly saying, “Nothing about me without me.”

We have moved from educating patients about their disease or their medical condition, to consulting with them about their course of treatment, to involving them as active partners in their own care and in designing parts of the health care system.

More and more health care organizations are involving patients in all aspects of their work, from sitting on search committees, to patient and family advisory committees, to being members of teams doing system redesign. In research, the James Lind Alliance in the UK has developed a method for bringing together patients, caregivers and clinicians to identify the top-ten research priorities in various fields, with the view that these priorities should influence the type of research that is done.

My observation (though I may be incorrect) is that faculties of medicine are lagging behind other areas in the health care system in how we involve patients in our work. I rarely, if ever see patients involved departmental strategic planning processes, for example. Patients aren’t on the search committees when we recruit our academic leaders, and they have little say on building the priorities of academic medical institutions.

The Department of Medicine at U of T has an opportunity to lead the way in patient involvement, and has already articulated this as a priority. The first of the department’s eight guiding principles is to “Ensure that the perspectives and experiences of our patients and their families drive our work”.

For this principle to become a reality, Dr. Gillian Hawker has asked me to help her operationalize that commitment as the DoM’s inaugural Lead for Patient Involvement.

I have been talking with people at the University of Toronto, outside of Toronto (the University of Montreal’s Centre of Excellence for Partnership with Patients and the Public is a leader in patient partnerships) and I have been reviewing some of the literature in this area. I am currently writing a discussion paper to present Dr. Hawker and the department with a series of options and opportunities for how patients can partner with the department, including:

• Governance – Should the department have a Patient and Family Advisory committee directly advising the Chair? Should patients be on key recruitment/appointment committees? Should a patient lead the patient involvement activities of the department and sit on its executive committee?
• Education – Should patients be involved in the resident selection process? Should the department establish a cadre of carefully selected and trained patients who are involved in the education of medical students and residents? The University of Montreal has experience in this regard through their Expert Patient Committee.
• Research – Should the department collate and develop tools to help department members meaningfully involve patients in their research, such as through priority setting, research design and conduct and knowledge translation? Should patients be partners in determining the department’s research priorities?
• Quality improvement – Should patients be fully integrated in QI activities to try to ensure that they focus on topics that matter to patients and collect outcome data that matter to them? How should patients be integrated into the teaching of QI?

There will be many challenges along the way, including the possible skepticism of some members of the department, the resources required (including payment to patients), the need to ensure that a diverse group of patients are involved and the avoidance of tokenism.

However, this is a great opportunity for the department to take a leadership role in patient partnership in academia, and there will be many educational and research opportunities as the department studies and learns from its activities.

I’d like to end with a bit of shameless advertising: Healthy Debate, which now has half of its editorial board made up of patients, is offering electives for residents and fellows who want to spend four weeks learning how to write for the public. Our first elective student, Department of Medicine resident Wilson Kwong, just wrapped up his time with us. His first product, an article on ethnic nursing homes, has already been posted. Please encourage any interested residents and fellows to apply – they can email me at laupacisa@smh.ca.

Starting in the fall, Healthy Debate is partnering with the Munk School, the Dalla Lana School of Public Health and the Toronto Star to offer a year-long part time educational program focused on writing on health issues for the public. Details about that program can be found here. This year will be a pilot, but we are hoping that it will be successful and we can offer this going forward.