Will mass opt-outs leave NPfIT summary care record project in chaos?

Martyn Thomas, visiting professor of software engineering at Oxford University’s Computing Laboratory, has expressed concerns about the leaflet that’s being given to patients who want to opt out of having their medical details to a summary care record.

He said:

“Opting out leaves patients with the same level of risk that they have currently, and the new summary care record introduces new risks: for example, that the information will be wrong or assumed to be complete when it isn’t (most databases have a high proportion of incorrect data), that details of your medical history will be seen by people who should not have seen it, and that vulnerable people will be forced to reveal details of their medical history (by being compelled to log in to their HealthSpace website).

“If patients are to make an informed decision about whether to opt out or not, then they need the scale of these risks to be explained to them.

“What is the level of injury currently caused to patients by the NHS because the SCR does not exist? How will the NHS ensure that the only people who have access to a patient’s SCR are clinicians who have a legitimate clinical need for the information?

“How will sensitive conditions ( for example abortions, HIV/AIDS, other STDs) be kept confidential if the SCR contains test results and prescription details?

Why has the Department of Health decided that even the most confidential data from a patient’s medical records should be available to researchers and administrators through the Secondary Uses Service?

“The leaflet should answer these questions and others, honestly and fully. Until these issues have been openly discussed and agreed, it will not be possible to draw up an adequate security specification for the summary care record. The fact that implementation is already underway raises the spectre that when patients find out what has been implemented, they will opt out in sufficient numbers that the NHS will be left in chaos.


NPfIT leaflet says national database could save your life

Martyn Thomas – Wikipedia

Martyn Thomas – profile on British Computer Society website

Oxford University computing laboratory

Patient confidentiality and central databases – Professor Ross Anderson