Increase patients’ role in cardiology policy

Hey there, time traveller!
This article was published 14/01/2015 (4119 days ago), so information in it may no longer be current.

OVER the past several months, the University of Ottawa Heart Institute has conducted a study into Manitoba’s Cardiac Sciences Program. The report is now complete and contains some strong language regarding the state of the Cardiac Sciences Program. I think one of the concerns of many of the patients who are seen by the cardiac program is how does this affect me and where is the program going? And engaging the patient and the patient’s family would be a good first step in creating a program that works efficiently.

My family has a significant history with the Adult and Pediatric Cardiac Sciences Program. My wife is seen at the Heart Failure Clinic at St. Boniface Hospital as she has a congenital heart defect and she has had open heart surgery. My sixyear- old son also had a congenital heart defect that was mitigated when he received a heart transplant at the age of five months. He is currently followed by pediatric cardiology at the Variety Children’s Heart Centre. Most of our acute care and cardiac surgery took place in Edmonton. Being a family with one cardiac transplant and the potential for another, we took a particular interest in the possibility of starting a cardiac transplant surgery program closer to home. As you can see, cardiology is a significant portion of our everyday life, and the issues faced by the program affect us in a very personal way. To us, the subject matter of the consultant’s report is life and death.

From the report, I was shocked at the blunt language. Saying a surgeon is “disinterested” in post-operative care is a damning statement, but much of the report pointed to issues we’ve experienced first-hand.

‘Saying a surgeon is “disinterested” in post-operative care is a damning statement, but much of the report pointed to issues we’ve experienced first-hand’

The frustration for me and many patients and caregivers is that much of the subject matter in the report is well-known to those who use the system. Patients and many staff close to the cardiology program were shocked at the notion a heart-transplant surgical program was being considered. It seems counterintuitive to place additional strain on a program that already has significant organizational problems (as identified in the report).

It is commendable that leaders in health care want to have a flagship cardiac program and view transplant surgery as a component of that program. However, expanding the surgical program requires a great deal of support. It is just not a matter of having a qualified surgeon. You need ICU staff, the infrastructure and support services.

Management of complex cardiac patients is extremely intensive, while ironically the actual surgery is a relatively finite portion of the program. Cardiac patients and transplant patients in general require a lot of followup support because it’s an ongoing and life-long process.

The challenge going forward is to act on the recommendations of the consultant’s report. I think there is a significant role for patients to participate in that process. The Winnipeg Regional Health Authority has indicated it wants to tackle the leadership of the cardiac program and is discussing setting up a committee to provide oversight over the program. This would be an excellent opportunity for patients or patient advocates to participate.

While there are patient representatives participating in many areas of health care, it is not common for patients or patients’ families to be taking a leadership role in health-care policy. But doing so would tap into a new resource and new perspective in health care. Engaging patients and their families in a leadership role is the only way to change the culture to a truly patient-centred system.

I hope the leaders in cardiac sciences and the WRHA take a long, hard look at how to better address patient needs and engage families. Some of the best advice they can receive may come at no expense — they simply need to ask.

 

Donald Lepp is an advocate for greater involvement of patients in Canada’s health-care system. He is a board member at Seven Oaks General Hospital and a council member of the Stollery Children’s Hospital’s Family Centred Care Council.