Who Controls My Health Data?

This sound familiar?  I visit my doctor’s office and the first person I encounter after getting called back checks my weight, temperature, and blood pressure.  They scribble something down in a folder and nod sagely.  Presumably they’re recording my personal health data, so I lean forward to see what they’re writing, at which point they turn and walk out.  This really irks me.

My Personal Health Data

Guys in general are probably pretty bad about keeping track of our personal health data.  If we’re honest about it, most of us probably know more about the health of our engines than we do about the condition of our bodies.  I have several friends that have actually taken oil samples from their engines and sent them for analysis to see how the engine wears.  I know this because I’ve watched them debate the results, wading through engine oil data.  I briefly considered this at one point.  Sad, I know.

When I started really trying to take charge of my health, one of the first things I did was try to find a way to measure my progress.  That’s the geek in me, I guess.  One of the local hospitals has a program called the Men’s Health Alliance, which allows members to get a blood lipid profile at no cost every year.  I signed up and promptly got tested.  I also bought a home blood pressure monitor and started checking my blood pressure regularly, since that was the catalyst for my epiphany.  This data was all sent to me.  Not my doctor.

Six months later, I saw my doctor for my first ever annual physical.  I came armed with my data to help him better understand my progress, which I promptly gave him to place in my records.  He sagely accepted the data, and I got the regular blood work, etc.  He called me to say that things looked pretty good, but lipids still needed to come down, and that was it.  He didn’t offer to give me a copy of my data.  No mutual exchange of information.

This bothered me for a few days, so eventually I called him back and politely requested a copy of my test results for my records.  I won’t bore you with the details, but suffice it to say that it took some effort, but I did get that copy.  I’ve managed to get every copy since as well, but it doesn’t happen without a substantial amount of effort on my part.  Quite frankly that rubs me the wrong way.  After all it’s my personal health data.  It’s a profile being built about me.  A snapshot of how the engine is running, if you will.  Yet trying to extricate this data from the healthcare system and gain access to it can feel akin to knocking off a bank.

Turns out there’s a group trying to change that situation.  Over the weekend, I ran across HealthDataRights.org.  It’s a non-profit, volunteer group that is promoting the idea that individuals have the right to their personal health data in a straightforward and simple manner.  I really like this idea.  For one thing, it appears to my admittedly libertarian principles.  After all, I’m paying them to collect and interpret information about me.  It makes sense that I should have access to the information.  But more practically, allowing patients access to their health data allows them to become involved in the decision-making process about their health.  If someone with high cholesterol can observe how their eating habits moves that number, they become an active participant in managing their risk of heart disease.

I know that not everyone will be interested in tracking the progress of their health so closely.  In fact, it may be that only a small number of people care about this subject.  For a long time, I never gave it a second thought.  But we have a growing health care problem in this country, and part of that is associated with the ever-expanding waistlines.  Part of the solution lies in getting people to participate in the process, and that requires information.

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