patient participation

Yesterday, the first ever meeting of Patient and Family Advisers (PFAs) was held at Holland Bloorview Kids Rehabilitation Hospital in Toronto. Patient and Family Advisers from Thunder Bay to Halifax were there to get to know each other and work on issues that they felt strongly about. Everyone there wanted to build a strong national network of advisers in order to bring a helpful patient and family voice to healthcare.

Many providers of care are beginning to take it upon themselves to consider the patient perspective. A recent movement to include Patient Reported Outcome Measures (PROMs) is a good example of this.

Friday, June 15, 2012 – Prior to the last six months, I spent a lot of time seeking out groups who were prepared to have patients join them in their discussions. Now, I have increasingly been attending meetings of groups who have, for the very first time, invited a patient representative to join them. They are now seeking out the Patients’ Association of Canada to find patient representatives to join them.

What is very interesting is how much their deliberations change once patients are in the room. They begin to recognize how little input patients have made up until now, and how patients offer a different perspective on the issues these groups face.

April 27, 2012 - In the recent past, it was difficult to get a response to our message about the importance of patient participation. Although many people agreed that patients should become more engaged in health care, there were few actual examples of that in practice and not much opportunity to participate in a meaningful way. There was also very little demand for more information.

All of that has been changing. And in fact, our message has become very desirable.

We are not sure how the change happened. We hope that it is because more people recognize that patients must participate in the system to help improve their own experience and that of everyone associated with health care. It is also now widely agreed that health care systems must improve their capacity to treat chronic conditions. And this of course means that the patient must be more actively engaged - not only in their care, but in how that care is delivered.

April 2, 2012 - Our health care system has been focused on acute care since its inception however the vast majority of illness these days is chronic rather than acute. Gradually, everyone is beginning to realize that hospitals can no longer be the core of the health care system if we are to respond appropriately.

February 3, 2012 - Yesterday’s New England Journal has a brief history of acute infectious diseases and a plea for continued vigilance. It declares how such diseases played an important part in the history of medicine and celebrates success in combating them through vaccination and scientific research. Although it somewhat overstates the benefits due to medical advance, it appropriately recognizes that our current medical system was founded when such diseases became understood and began to be dealt with.