For the last three years I have kept a Livejournal blog describing my experience as I was diagnosed and treated for prostate cancer. I am no-longer receiving any treatment for the condition and so I regard myself as cured and call myself a cancer survivor.
I created that blog because I wanted to record and communicate my experience as a way of demystifying the process and helping people understand that cancer is only another treatable disease. The outcome is often (but not always) that the person is able to live a normal life or, at least, live a life in which the effects can be managed. Even where the condition is the direct cause of the death of the person it is still important to take the positives from the situation and make the information available to other people in the same situation.
I have discovered that there is a very vigorous debate going on the internet about the relationships that people have with the medical profession. It covers such things as: "What do we call such people?"; "who owns the information?"; "Whose life is it anyway?". It goes by various names: "Health Advocacy", "Participatory Medicine" and lots of others.
It seems to me that there is a paradigm shift going on. People have access to information that was previously only available to health professionals, their own information is held within the health system but it could now be owned by the person not the system. These are technological drivers. In the United States there is a huge debate on how to make health provision fair and efficacious. This is a major social change. The other driver (both technological and social) is the explosion in social media which is enabling this debate to occur between people across the world.
I am British citizen who is more than happy with the National Health Service and would never consider buying health insurance.
The thesis I want to explore in this blog is that there is a paradigm shift happening and it is akin to the ways in some societies (notably Europe and the US but by no means exclusively) have changed the way they regard and treat disabled people over the last 20 years or so. The major change has been the development of the "Social Model" of disability. I believe that we are developing a "Social model" of medicine.
I attended a "Disability Equality" training course last week and one of the participants complained that disabled people had created a new establishment when he asked who the "we" were that our trainer (who is visually impaired) kept referring to. She replied: "empowered disabled people". To my mind that is what is happening in medicine—people previously referred to as "patients" are becoming empowered and developing a new vocabulary as a result.
In coming posts I will develop this theme and look at some of the terms that are being bandied about.