There's a lot of talk out today about the "Health Data Bill of Rights" which Google has chosen to endorse. Tim O'Reilly endorses it as well saying...
I was surprised then, when I met recently with a congressman in Washington, a former physician, to talk about healthcare reform. When we moved to the topic of portable health care records, I was quite startled to hear him say "When I was practicing as a physician, I considered those records to be my property." After all, he said, they were his notes, his analysis. He obviously still felt this way.
Given this disconnect, I was glad to endorse today's Health Data Bill of Rights:
OK. Let's take an example here. What about Mental Health patients? Under this proposed law patients would have access to all their Therapist's notes. What happens when an already depressed patient learns their Therapist is concerned they might commit suicide? Might they get so distraught over the thought that they actually go through with it? Might that be why Psychiatrist, Psychologists and Therapists generally don't share their notes with patients? I think it probably is.
But, you say, maybe that's an isolated problem. Normal medical situations wouldn't suffer from that same problem. Right? Let's take another example.
I go to the Doctor complaining of stomach pain. The Doctor sees me, writes a prescription, and asks me to take a blood test. Well, I don't like needles and I just had a blood test 3 months ago so I explain this to the Doctor and he relents. He tells me to come back in a few weeks and we'll see how the prescription is working. Great. I pick up the prescription, head home and since I'm living in this brave new world I pull up Google Health to review the day's session.
Then I see this annotation on my chart "Patient was extremely agitated to the point of being irrational."
What?!? This is what my Doctor thinks of me? Well screw you Doc, I'll find a Doctor who doesn't think I'm "irrational" thank you very much. And off I go.
Where's the problem here? Well it turns out I have lead poisoning. The Doctor wrote the annotation not to insult me but to remind himself to check again when I return in a few weeks. That annotation would be crucial to diagnosing what's wrong with me but it got lost in the shuffle as I went on to see another Doctor out of anger over a perceived slight.
(For the record this is a true story based on me. My family physician discovered lead poisoning by putting the very same annotation in my chart years ago.)
So what's the solution here? The answer is I honestly don't know. But what I do know is that this is a far bigger problem than the "throw open the doors to data" crowd wants to believe. Google's post on the subject cites HIPAA as if it currently gives the patient carte blanche access to their medical records but that isn't the case. HIPAA is designed to regulate Insurance Companies and as such is a companion piece to other legislation that sets these standards (legislation which is different from state to state). I'll quote from an article I found on the web...
Your Request Can Be Turned Down...
There are multiple reasons why a request for your medical records can be turned down by a covered entity. A doctor or other covered entity can decide to withhold certain information found in your records if it could endanger your health or someone else’s. If this is the case, the doctor must still provide you with safe information for you to view.
Another reason for not receiving your medical records could be when the request is frivolous or vexatious. Repeatedly asking for your medical records is one example or requesting them simply for amusements sake is another sure way to block your access.
(For the record this just corroborates what I already know, I didn't get the information from this web site)
In closing my main point is a simple one: You can't go around applying simplistic solutions to complex problems. When you do it blows up in your face and when the problem is health related that explosion can cause lives to be lost. As I said, I don't have the answer here. But I know it's out there and that it lies in a long and serious discussion between technology experts and Medical personnel.