BMA votes for care.data opt-in

The British Medical Association has voted in favour of making care.data an opt-in system rather than an opt-out one.

After a short but passionate debate at its annual representative meeting this morning, a motion criticising many aspects of NHS England’s flagship big data initiative for healthcare was carried, including the requirement for patients to opt-in.

Care.data aims to expand the Hospital Episode Statistics and to link them to other data sets, starting with GP data. This information will be released to researchers and others.

However, the programme has been delayed until at least the autumn, following a public outcry about the consent model and concerns about exactly who will be able to receive information. A publicity campaign this spring was criticised for its lack of clarity and for failing to include an opt-out form.  

Proposing the motion at ARM, Suffolk GP John McGough said that “while it could be useful” to release information to researchers there were “problems” with the care.data programme, because it wanted to use GP data that represented “the hopes, confidences and fears” of patients.

An opt-in, he acknowledged, might reduce the amount of data included in the programme, but “so be it.”

Tony Calland, the chair of the BMA’s Medical Ethics Committee, disagreed. He said some BMA committees backed the opt-out because, as with organ donation, many members of the public might support the idea of care.data, but fail to act on an opt-in.

He warned that those most likely to opt-out would be “the socially excluded and the hard to reach”, who had most need of good health service planning and research.

He also warned the ARM that NHS England was unlikely to change its stance, so a vote in favour of an opt-in would weaken the BMA’s influence.

However, Mike Ingram, chair of the LMCs conference, came back with a passionate repost, saying the proponents of care.data had already undermined their case by being “arrogant” about the project, and “in denial” about some of the issues that it raised.

Just last week, the Health and Social Care Information Centre issued the report of the Partridge Review into the data release processes for HES operated by its predecessor, the NHS Information Centre.

This showed there had been many ‘lapses’ in procedures, even though the supporters of care.data have argued that HES has operated for many years without endangering patient confidentiality.

Ingram said a new way forward was needed to restore trust. “It may not be ideal, it may skew data, but it is the only way… to stop the greater erosion of trust we all need to do our jobs,” he said.

The ARM motion also says care.data lacks confidentiality, argues that it “runs the risk of GPs losing the trust of their patients who may feel constrained in confiding in them”, and fails to define the potential uses of data.

In addition to calling for an opt-in system, it says “data should only be used for its stated purpose of improving patient care, and not be sold for profit.”