medConfidential launched on Wednesday with a highly successful conference event, after working for nearly two months behind the scenes. We’ve now published audio and video.

This morning the Secretary of State for Health responded to the Caldicott report, confirming that there would be a patient opt-out on the sharing of health data, the details of which have yet to be finalised.

Today’s announcements from the Secretary of State, he stated, marks “one of the most significant moments in the dramatic transformation of services in the NHS as a result of sharing of information in a practical and responsible way.” (00:30). We agree that there are substantial changes being made to the way patient data is used, and that these need detailed and careful consideration from multiple different perspectives.

Responding to the Caldicott report, the Secretary of State said: “GPs will not share information with the HSCIC if people object”… “people will have a veto on that information being shared in the wider system”… “We need to give people confidence that they are in charge of their own medical record, and they decide who sees it. And if we give them that confidence, actually, what we’ll find is that, the vast majority of people, if they believe it’s being used responsibly and in their interests, will want it to be shared.” (5:03). The Secretary of State then gave an anecdotal example of how this already happens now.

medConfidential has no issue with, and fully supports, the sharing of patients’ information for their own medical care and we recognise and appreciate the necessity for overriding consent in cases of public health emergency, and life and death situations. But the proposed data sharing initiatives – covering uses including ‘commissioning purposes’, ‘secondary uses’ and ‘to drive economic growth’ – are unrelated to such emergency situations.

The devil is in the detail, and many of the details remain to be worked out. But at least in principle,  the Secretary of State has confirmed that patient demands for privacy will be respected. It is unfortunate it took the formation of a campaign to win that respect, and we shall continue to scrutinise every aspect of these new policies and initiatives but, for now, it seems our initial goal – to win patients the right to say what is done with their medical records – has been achieved.

Explicitly, from 13:30: “The Guidance that we will be giving to GPs, is that, if people ask for data not to be shared, then it wont be” “If people ask for their information not to go beyond the GP’s surgery, GPs will respect that”.

And, with regard to those who have already opted out for any reason: “Q: What happens with existing consent? Hunt: We will respect that”…” We’re not going to cancel the opting out that has already happened. There may be a process of re-contacting people to explain the new arrangements, and that’s a detail which we’ll work through in operational terms. We will respect the people who have already said they wish to opt-out of any data sharing.”

medConfidential welcomes these statements from the Secretary of State, and we look forward to working with him and NHS England to ensure that the “operational terms” meet the requirements that he has outlined.

If you would like to be kept up to date on how to opt out, as we work to ensure that the position outlined by the Secretary of State is properly implemented for your medical records, please join our mailing list:

Note from Phil & Terri: Huge thanks to all our volunteers who made the launch event run so smoothly, including Judith’s heroic efforts in the kitchen, Andrew on the door and workshop-wrangling, David, Brian and Ceri. The day would not have been as productive or as enjoyable without them.