For patients' sake, don't boycott e-health records

Can I be the only patient scratching my head about the BMA's decision to advise general practitioners to boycott the creation of summary care records for their patients? The new record has two main purposes: to provide the NHS with crucial patient information when none is available from other sources, and to give people themselves access to a good summary of their health records whenever they need it.

For me as a patient this means that anyone I ask to help me at evenings and weekends will know basic information about me. This is particularly important now that GPs no longer provide their own out of hours cover for us. Unfortunately, I find that I usually develop a raging urinary tract infection on a Friday night and it would be really helpful for the stranger I ring to know what antibiotics worked for me before, which one caused me to come out in a rash and needs to be avoided lest I am allergic to it, which one made me vomit, and which gave me high fevers and the shakes. After a sleepless night, I can't always remember their names, which aren't very user friendly at the best of times.

I really want to be able to see my own records. Knowing that information passed around about me is correct would be reassuring. Also, when I am worried, I don't always take in what I've been told if it's complicated. I really would like to be able to review it when I am calmer. But more generally, it's my life and my health and I don't like making important decisions flying blind.

I can appreciate what GPs may be worried about. I would be the first to agree that my health information should remain confidential. But I also expect, as other patients do, that important information about me will be shared with others who need it to give me care. It is well documented that the balance isn't right now, and that patients suffer harm as a result.

It would be very unfortunate if a patient complained about information being shared. All of medicine is a balance of risks, and risk needs to be weighed against the known risks to patients of poor information sharing. GPs worry, too, about information being shared that is not accurate. So do I. What better way to prevent inaccuracy than by giving me access to the information so that I can check it?

Are the risks of the summary care record great enough to justify a wholesale boycott by GPs, acting on my behalf? I find it reassuring that the record is being tried in a few areas first so that problems can be spotted early by an independent evaluation and fixed. If I don't trust having my summary care record on the national database, when I get my letter telling me it will happen in my surgery, I will have four months to tell my GP I don't want one. Or I can say I want one to be created that only I can see. Or I can ask that certain information is not put on it. And I can change my mind at any time. The evaluation will assess how well people were informed of their options.

With all of these safeguards, why are some GPs trying to take this decision out of my hands? I wonder if they ever ask themselves why no major patient group or civil liberties group seems to agree that a boycott is the way to move things on?

In the 1980s, I ran a support group for thousands of British women who had trusted their doctors to fit them with a contraceptive device that turned out to be faulty. At least 3000 got compensation from a $2.5bn (£1.2bn; €1.8bn) trust fund set up by the US courts. Judging from the many hundreds of letters and phone calls I had, GPs had been slow to act on these women's symptoms—at great cost to their fertility. No one had the information they needed to avoid this tragedy, not least patients.

As Cyril Chantler has observed, treatments are becoming ever more complex and effective, and more dangerous with it. I don't want my doctors taking all the responsibility for my health care and keeping all the information to themselves. I am not alone in this: Angela Coulter's review of research last week (BMJ 2007;335:24-7; doi: 10.1136/bmj.39246.581169.80) shows that evidence is mounting: true collaboration produces better outcomes for both patients and the NHS than paternalism. It is precisely why I went to work for NHS Connecting for Health.