experience matters

My wife had experienced strange (and very uncomfortable) abdominal pains for a number of years. No one could ever properly diagnose it. Every time the pain flared up, she’d trundle off to a clinic, they’d run a couple of tests (which would always be inconclusive), and a couple of days later it would disappear again. Painful and frustrating, since the obvious conclusions were that no one was reading the history of what was happening, and we both knew it would come back again.

Finally, last December (during another bout of pain), she lucked out and got in to see her long-time doctor. (Yes, read that sentence again. I said “lucked out” to see her own doctor. But I digress.) After recounting the last few years of goings-on, the doctor recommended something a little different. A new test revealed acute appendicitis.

In all of this running around, one thing struck me as being so backwards that I was amazed that someone didn’t accidentally remove, say, my wife’s spleen. Everyone communicated verbally. Is it just me, or did we suddenly regress 100 years?

Okay, a bit of an exaggeration, but my point is the same: the medical community (and not just here in Cowtown, this is a widespread issue) has to rely on verbal communication (the telephone game problem), faxes (read-only and not always legible), and if you’re particularly unlucky, hand-written notes. Even the most basic of electronic communication — email — seems to be eschewed.

My wife works for the Calgary Health Region, so I often hear about many of the inefficiencies that abound within. (I’m certain that Calgary is not alone.) Most of them are from poor communication stemming from no centralised records. And despite a fairly large effort in the Health Region to have everyone read off the same databases, it only covers the Health Region. If I go to British Columbia and need to visit a hospital, I have to verbally tell them my medical history. Worse, if I have to go to another country.

Which begs the question: In our age of ubiquitous computing and near-omnipresent networking, why isn’t there some form of centralised location for all this stuff? A place where my doctor, my ophthalmologist, my podiatrist, my dentist, and most importantly, MYSELF, can review (with permission) my health record. Record. Singular. One. Combined, covering all aspects from the sniffles I had last week to the penicillin allergy I developed in Grade 1 after tonsillitis.

I thought it would make a killer business model. The one thing I lack is enough contacts within the medical industry to get the credentials to pull it off. Turns out I wasn’t the only one who thought of this. Google, Microsoft, iHealthRecord, and a few other services have beaten me to it.

These services are just starting to roll out in limited release in the United States. They’re with several HMOs (which I’m beginning to appreciate more and more with Canada’s grossly diminished public service), and they look promising (if a bit fractured). I can’t wait until something like this works with all the various health regions in Canada. But these services bring to light some of the concerns people have about a centralised system.

The biggest one is privacy. Privacy is a huge problem for most people. It’s not just about the fear that someone could crack into your data (that’s a security issue), it’s having your private health information visible to others. Herein lies the irony — this is not about privacy. It’s about control. People want to make sure that only people they approve can see anything, and a system like this makes people worry that they’ll have no control at all.

Guess what? You have no control right now. Your health records are duplicated in many places (maybe even a hundred times!). You can’t see any of them without going through a lot of red tape. Doctors can request them without your knowledge or permission. Your entire record can be even transferred from your existing doctor to another one if practises are sold or shut down. You might not even be told.

In my world — heavily populated with kittens, puppy dogs, and little children laughing and playing under cloudless skies all the day — I have absolute control over my record. I define not only who has access to my record (e.g. my dentist), but also what specifically they can see. I might decide that they don’t need to know about my mental health, since they’re really only there to look at my teeth. My general physician, on the other hand, would probably need to see everything. If I visit a clinic for a quick item, I can grant temporary access. I can pull access if I leave one doctor for another. And most importantly, I can update my own information and see what the other doctors are saying.

Crazy talk, I know. Especially since this will initially increase the number (and severity) of hypochondriacs. Long-term, I think this will also create more education. People will learn more about themselves, their health conditions, and pay attention (shocking thought though this is) to what their doctors are telling them.

So, I have a question to pose to our readers: Would you accept a centralised system? (Not necessarily any of the services listed above.) What problems do you believe you would have with such a system? And — this is the important one — do you think it would make the experience of visiting doctors less tiresome and/or troublesome?

[Update: 23 May 2008]

Google Health is now in public beta. It’s not really usable in Canada, but anyone with existing records at a select few American institutions can give it a whirl.