Don’t boycott e-records, pleads CfH patients lead

Connecting for Health’s patient lead, Marlene Winfield, has pleaded with GPs not to boycott key National Programme for IT initiatives following the British Medical Association’s recent vote in favour of non co-operation with the NHS Care Records Service.

Writing in the British Medical Journal, Winfield questions whether a boycott of e-health records is truly in the patients’ best interests.

Winfield told E-Health Insider: “My job is to make sure that patients and the public have the best information they can in order to look after their own health. As much as I appreciate why GPs are concerned, I don’t believe it is in patients’ best interests, to boycott the national programme.”

In a detailed personal view article for the journal, Winfield tells of why e-records are so important to her in ensuring that she can be treated in an emergency.

“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.”

Winfield is a veteran advocate for patients’ rights and her interest in patient and citizen issues in relation to electronically stored health information pre-dates Connecting for Health. Her experience in running a support group for women who had been prescribed faulty contraceptive pills in the 1980s inspires her to keep on campaigning.

She told EHI: “Patient access to records has finally made it to the top of the agenda, and over time this has developed into the strong issue it is now. I am working closely with the Patient Information Exchange group and am helping to ensure that CfH meets every patients’ needs.

“Inevitably, there are all sorts of political agendas getting in the way, frustrating the process that people want to have. But I have seen first hand what happens when the wrong advice is given, and I don’t want to see it again. As Cyril Chantler [distinguished former dean of the Guy’s, King’s College and St Thomas’ Hospitals’ Medical and Dental School] 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.”

In her article, Winfield questions why GPs feel the need to boycott the system: “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?”

She admits to EHI that confidentiality is always going to be an issue, but added: “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.”

Winfield now hopes that the three early adopter sites of the Summary Care Records and the independent evaluation that will follow will help to reassure both GPs and the public that the scheme is worthwhile.

Links

BMJ