Electronic sharing of patients’ data requires their explicit consent, report says

The NHS says it will continue to deploy electronically shareable summaries of health records in England, despite an independent evaluation’s criticism of the way it obtains the consent of patients.

The study of the experiences of four “early adopter” primary care trusts in implementing the electronic summary care record finds fault with several aspects of the culture and methods of the controversial national programme for IT in the English NHS. The report, published last week, criticises the programme’s “narrow and instrumental focus on implementing a technology” rather than on broader change.

However, the report’s authors reserve equal ire for the programme’s critics in lobby groups and sections of the press for contributing to “demonisation” through “a lamentable lack of criticality,” which overshadowed sensible debate.

In an implicit criticism of the BMA the authors say that professional groups should not try to impose blanket rules concerning the use of the summary care record; as elsewhere in medicine “professional judgments should be made with attention to context and the needs, wishes and understanding of the patient,” the report says.

The evaluation, by Trisha Greenhalgh and colleagues at University College London, was commissioned in part to defuse tensions between the national IT programme and the BMA over shared electronic records, which began to be deployed last year (BMJ 2008;336:1029-30 doi: 10.1136/bmj.39567.550301.80). However, the report says that it is far too early to assess the benefits of the summary care record or even to define the best way of measuring them.

Instead, it makes a series of recommendations about the way the NHS’s IT agency Connecting for Health manages the project and other clinically important parts of the world’s largest civil IT programme.

The report notes “widespread desire from patients and staff” for a mechanism for obtaining patients’ consent to replace the current process, which assumes that patients have given “implied consent” to initial uploads to the summary record of basic information such as details of current treatment, allergies, and adverse reactions. This model is “widely seen as overly complex and unworkable” and is regarded by many GPs as unethical. Instead, it recommends that patients give explicit “consent to view” their data.

It also calls on the NHS to:

• Adopt “a more flexible and adaptive approach to change” and to abandon mechanistic timetables for deploying new information technologies

• Curb the IT programme’s tendency to “scope creep” and to consider tightening the definition of what the summary care record is to be used for, and

• Take a more balanced view of the system’s benefits and disbenefits.

It notes that Connecting for Health had an active benefits realisation team but that no equivalent team was “charged with documenting and disseminating its disbenefits or risk.”

The 138 page report’s main theme, however, is the call for “a more sophisticated policy debate.”

The BMA and Connecting for Health welcomed the evaluation but adopted familiar positions on the extent to which it should be acted on.

Deirdre Hine, chairwoman of the BMA’s working party on IT, backed the recommendation for consent to view patients’ data, which she said “would meet much of the concern about informed consent expressed by doctors and give patients appropriate control of their personal data.” She urged that “until these changes are made there should be no further roll-out of the scheme beyond the pilot sites already taking part.”

Connecting for Health did not go this far. A statement said that the early adopter programme “will continue in its present form” while the summary care record advisory group considers the report’s findings.