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.
I spent this morning with a national group that was formed to develop recommendations for dealing with the misuse of prescription drugs. For the moment, I was the only patient representative in the room, although other groups previously had long and intimate contact with patients. I explained how to add more about the patient experience to the process, and pointed to the fact that patients should also have access to more information.
At the end of the meeting someone else raised the idea that patients who had experience with prescription drug misuse should join the group. That was the high point of my two days in Halifax.