Harry Cayton, chair of the new National Information Governance Board for Health and Social Care, has told the government to quash plans to share patient records with researchers without consent:
There is pressure from researchers and from the prime minister to beef up UK research. They think of it as boosting UK Research plc. They want a mechanism by which people's clinical records could be accessed for the purposes of inviting them to take part in research, which at the moment is not allowed. I think that would be a backward step.
It would be saying there is a public interest in research that is so great that it overrides consent and confidentiality. That is not a proposition that holds up.
We believe this is a breach of good practice in confidentiality and consent, and have questioned if there is a sound legal basis for it.
DoH minister Alan Johnson has given a typical government response treating the Information Governance Board's concerns as just another consultation submission that will be given minimal attention. It doesn't help that Information Commissioner Richard Thomas earlier this year gave medical researchers a free pass on access to patient data.
This is another timely reminder that figleaf "governance" arrangements are no substitute for data minimisation in protecting privacy.