Why does no one trust patients?
On the TV series House, the eponymous sort-of-hero has a simple answer: "Everybody lies." Because he believes this, and because no one appears able to stop him, he sends his minions to search his patients' homes hoping they will find clues to the obscure ailments he's trying to diagnose.
Today's Health Privacy Summit in Washington, DC, the zeroth day of this year's Computers, Freedom, and Privacy conference, pulled together, in the best Computers, Freedom, and Privacy tradition, speakers from all aspects of health care privacy. Yet many of them agreed on one thing: health data is complex, decisions about health data are complex, and it's demanding too much of patients to expect them to be able to navigate these complex waters. And this is in the US, where to a much larger extent than in Europe the patient is the customer. In the UK, by contrast, the customer is really the GP and the patient has far less direct control. (Just try looking up a specialist in the phone book.)
The reality is, however, as several speakers pointed out, that doctors are not going to surrender control of their data either. Both physicians and patients have an interest in medical records. Patients need to know about their care; doctors need records both for patient care and for billing and administrative purposes. But beyond these two parties are many other interests who would like access to the intimate information doctors and patients originate: insurers, researchers, marketers, governments, epidemiologists. Yet no one really trusts patients to agree to hand over their data; if they did, these decisions would be a lot simpler. But if patients can't trust their doctor's confidentiality, they will avoid seeking health care until they're in a crisis. In some situations - say, cancer - that can end their lives much sooner than is necessary.
The loss of trust, said lawyer Jim Pyles, could bring on an insurance crisis, since the cost of electronic privacy breaches could be infinite, unlike the ability of insurers to insure those breaches. "If you cannot get insurance for these systems you cannot use them."
If this all (except for the insurance concerns) sounds familiar to UK folk, it's not surprising. As Ross Anderson pointed out, greatly to the Americans' surprise, the UK is way ahead on this particular debate. Nationalized medicine meant that discussions began in the UK as long ago as 1992.
One of Anderson's repeated points is that the notion of the electronic patient record has little to do with the day-to-day reality of patient care. Clinicians, particularly in emergency situations, want to look at the patient. As you want them to do: they might have the wrong record, but you know they haven't got the wrong patient.
"The record is not the patient," said Westley Clarke, and he was so right that this statement was repeated by several subsequent speakers.
One thing that apparently hasn't helped much is the Health Insurance Portability and Accountability Act, which one of the breakout sessions considered scrapping. Is HIPAA a failure or, as long-time Canadian privacy activist Stephanie Perrin would prefer it, a first step? The distinction is important: if HIPPA is seen as an expensive failure it might be scrapped and not replaced. First steps can be succeeded by further, better steps.
Perhaps the first of those should be another of Perrin's suggestions: a map of where your data goes, much like Barbara Garson's book Money Makes the World Go Around? followed her bank deposit as it was loaned out across the world. Most of us would like to believe that what we tell our doctors remains cosily tucked away in their files. These days, not so much.
For more detail see Andy Oram's blog.