Patient Engagement - Finding Your Degree of Involvement

Miriam Kaufman BSN MD FRCPC is a paediatrician and public educator.  She graduated from Duke University School of Nursing in 1976 and Queen’s University Faculty of Medicine in 1980. Miriam has written a number of books for young people and their parents. She is an Adolescent Health Specialist at the Hospital for Sick Children in Toronto.

It was an honour to be able to attend the Health Council of Canada’s National Symposium on Patient Engagement.  I had many thoughts throughout the day, often starting with comparing the paediatric and adult health care systems.

In paediatrics, doctors, nurses and allied health professionals have long had a different relationship with patients than in the adult care setting.  Long gone are the days of restricted visiting hours, health care providers who only talk to the parents, and drab care settings.  Family-centred care has become embedded in the paediatric system, to the point that adolescent care providers (like me) have to remind our colleagues that it isn’t always appropriate to have the parents in the room, or to honour parents wishes if they ask us to lie to their 17 year old.

Patient engagement is essential, but I do think it is important to remember that different people want to be engaged at different levels and, depending on how they are feeling, maybe not at all.  Some people may just want to get health care, and their providers struggle to help them see this as their disease, with engagement in the process essential for an optimal outcome.  Other patients want to be engaged in their own care, getting advice and making informed decisions.  A much smaller group want to be engaged with the system by sitting on committees, advocating for others, or consulting with health care teams.  Health care institutions must do everything they can to support patient engagement, but it shouldn’t be a requirement for care.  No one should be forced to be more engaged than they feel comfortable.  Highly engaged people help create environments that are respectful of and more comfortable for all patients.

At the conference, we were classified as being either health care consumers or providers, but of course all of us in the room were consumers.  We have all had less than optimal experiences in the health care system, but most of us have had some very positive ones too.  I must confess that I am in the “engaged enough” category when it comes to my own health care.  I try to find good providers, I take responsibility for sorting out their advice and making decisions, I almost always show up on time, and I am engaged in staying as healthy as possible by exercising, eating fairly well and never letting a day go by without chocolate! But I’m not interested in being actively involved in a consumer group or sitting on an advisory board.  I don’t think there is anything wrong with this.

I keep coming back to two of the speakers.  One spoke about the incredible work that Princess Margaret is doing to make their outpatient experience more accessible and efficient for patients.  I loved their ideas and the fact that they came from hours of discussions with current and previous patients.  But the plan they were putting into place was expensive and was being paid for by a private donor.  We don’t have a health care system that can afford some of these amenities.

I also think that patients feel more engaged when staff are more engaged.  I was with my father at a Toronto hospital last week and was very impressed by how kind and helpful everyone we spoke with was, from busy people who stopped to give us directions, to the person at reception, to the CT technician and on and on.  We both felt comfortable in that environment, and it had nothing to do with the building or the amenities.  It was because there was no feeling that it was their hospital and that we were trespassers.  Rather, we felt that the hospital was shared by all—providers, staff, patients, and that we belonged.