Introducing the Fainting Goat

Let’s talk about personal health information and how putting people in control of their information can improve their health and the health of our healthcare system. 

After 25 years working in the Canadian healthcare system for a provincial health department as well as non-government health agencies and local health authorities, I have created this blog to hopefully fuel some discussion outside of ‘the system’. 

I believe that there are only two ways to fix our healthcare system; create efficiencies to save money (without compromising care); and mitigate the demand on the system – prevent people from getting sick in the first place.  We need both solutions to work in tandem and we all have a role to play.   Psst ….. In case you were not aware, there are some significant challenges with the Canadian healthcare system, and some would say, the system itself is on life support right now.  

So, what’s with the Fainting goat? If you haven’t heard of these rare, quirky, lovely animals there are a number of amusing videos online and there are even Fainting Goat blogs (this is not one of them) check them out on You Tube.  These goats have a congenital medical condition known as Myotonia congenita, the goat's muscles tense up when the animal is startled and don't immediately relax. It’s like experiencing a full-body charley horse, without the pain.   This unusual condition brings new meaning to the term ‘scapegoat’.  Fainting goats were bred as the ultimate fall-guy; they were put in fields with flocks of sheep and, if a predator attacked, the goat would faint, be eaten, and the sheep would escape. 

When I came across the fainting goats, they made me think of all the people out there dealing with unique health issues, congenital or acquired, acute or chronic and how they cope with their diagnosis.  The goats are survivors despite living with a condition that makes them incredibly vulnerable.  If you are fortunate enough to be completely healthy, congratulations, keep it up.  Chances are you or someone in your family deals with a health issue or there is a hereditary health problem lurking in your family history that occasionally crosses your mind. 

We can all relate in some way with the shock of a diagnosis, the panic to learn as much as you can about whatever insolent disease or disorder had the nerve to discount the condition of your health.  My fainting goat was a rare form of melanoma, diagnosed and treated over 10 years ago never to return (knocking on wood here – no this is not a blog about skin cancer).  The shock of receiving that diagnosis was a bit like the stunned paralysis the fainting goat experiences but, like the goat, I eventually bolted up and got to work. 

My experience emphasized how important my role is in managing my health and how big the information divide was between my doctors and me.  The internet helped me to bridge some of the information divide, add to that my connections from working in the system and having both a GP and oncologist in my family, you would think I would be an engaged partner in my care decisions. Despite all these advantages I was barely more than a passive participant in my care.  My research took hours of work every night, provided lots of background information and the opportunity to ‘chat’ with people dealing with a similar diagnosis but also sent me in lots of wrong directions.

How do we navigate a complicated healthcare system over our lifetime in a way that reduces our risks and maximizes our opportunities to live a long and healthy life?  I believe one of the solutions is to own and manage our personal health information.  Personal health records leverage technology to empower each individual to manage their health information in a way that enables them to improve and maintain good health.  It is about making everyone an active, informed partner in their health care. 

The evolution of personal health record technology is in its infancy with adoption rates advancing at different stages around the world. Canada is quite far behind most developed countries but sometimes that can work to our advantage.  I believe our approach to personal health records should be guided by the experiences of other nations by studying their successes, challenges and the relevance of their approach to Canadians.  I also strongly believe personal health records need to be developed to meet the needs of healthcare consumers not providers.

So this is my blog, my passion. It’s not about goats or cancer. Every week I intend to write about current advances in the adoption and evolution of PHRs around the world.  In between, I will be tweeting relevant articles and commentary on the subject @myfaintinggoat.  It’s an important discussion and I hope that you will join in and make your voice heard, share your experiences, your support or your skepticism. 

It’s your health information.  It’s your health.  Manage it well.