Trust the data, not the database
"We're advising people to opt out," said the GP, speaking of the Summary Care Records that are beginning to be uploaded to what is supposed to be eventually a nationwide database used by the NHS. Her reasoning goes this way. If you don't upload your data now you can always upload it later. If you do upload it now - or sit passively by while the National Health Service gets going on your particular area - and live to regret it you won't be able to get the data back out again.
You can find the form here, along with a veiled hint that you'll be missing out on something if you do opt out - like all those great offers of products and services companies always tell you you'll get if you sign up for their advertising, The Big Opt-Out Web site has other ideas.
The newish UK government's abrupt dismissal of the darling databases of last year has not dented the NHS's slightly confusing plans to put summary care records on a national system that will move control over patient data from your GP, who you probably trust to some degree, to...well, there's the big question.
In briefings for Parliamentarians conducted by the Open Rights Group in 2009, Emma Byrne, a researcher at University College, London who has studied various aspects of healthcare technology policy, commented that the SCR was not designed with any particular use case in mind. Basic questions that an ordinary person asks before every technology purchase - who needs it? for what? under what circumstances? to solve what problem? - do not have clear answers.
"Any clinician understands the benefits of being able to search a database rather than piles of paper records, but we have to do it in the right way," Fleur Fisher, the former head of ethics, science, and information for the British Medical Association said at those same briefings. Columbia University researcher Steve Bellovin, among others, has been trying to figure out what that right way might look like.
As comforting as it sounds to say that the emergency care team looking after you will be able to look up your SCR and find out that, for example, you are allergic to penicillin and peanuts, in practice that's not how stuff happens - and isn't even how stuff *should* happen. Emergency care staff look at the patient. If you're in a coma, you want the staff to run the complete set of tests, not look up in a database, see you're a diabetic and assume it's a blood sugar problem. In an emergency, you want people to do what the data tells them, not what the database tells them.
Databases have errors, we know this. (Just last week, a database helpfully moved the town I live in from Surrey to Middlesex, for reasons best known to itself. To fix it, I must write them a letter and provide documentation.) Typing and cross-matching blood drawn by you from the patient in front of you is much more likely to have you transfusing the right type of blood into the right patient.
But if the SCR isn't likely to be so much used by the emergency staff we're all told would? might? find it helpful, it still opens up much broader possibilities of abuse. It's this part of the system that the GP above was complaining about: you cannot tell who will have access or under what circumstances.
GPs do, in a sense, have a horse in this race, in that if patient data moves out of their control they have lost an important element of their function as gatekeepers. But given everything we know about how and why large government IT projects fail, surely the best approach is small, local projects that can be scaled up once they're shown to be functional and valuable. And GPs are the people at the front lines who will be the first to feel the effects of a loss of patient trust.
A similar concern has kept me from joining at study whose goals I support, intended to determine if there is a link between mobile phone use and brain cancer. The study is conducted by an ultra-respectable London university; they got my name and address from my mobile network operator. But their letter notes that participation means giving them unlimited access to my medical records for the next 25 years. I'm 56, about the age of the earliest databases, and I don't know who I'll be in 25 years. Technology is changing faster than I am. What does this decision mean?
There's no telling. Had they said I was giving them permission for five years and then would be asked to renew, I'd feel differently about it. Similarly, I'd be more likely to agree had they said that under certain conditions (being diagnosed with cancer, dying, developing brain disease) my GP would seek permission to release my records to them. But I don't like writing people blank checks, especially with so many unknowns over such a long period of time. The SCR is a blank check.