Discussing the impacts of care.data; some thoughts for Health Conference organisers

With care.data trying to get underway again, we expect to see NHS England on the conference circuit, talking about how this time they’ve got it perfectly right.

Unfortunately, with several significant – indeed fundamental – problems as yet unresolved, such a line suggests that (while HSCIC may soon be in a position to provide a fix for one of the most egregious consent screw-ups of the entire programme thus far) NHS England itself still hasn’t learnt the lessons.

So, if you’re running an event where care.data is going to be a topic – and for the next year, we reckon there should be at least one such session at every conference that wants to be taken seriously by either the public or the profession – medConfidential suggests that, rather than providing a platform for a casuistic monologue from NHS England, care.data-related sessions should take the form of a panel.

A useful panel would probably include at least 3 representatives drawn from these different groups:

  • A GP, psychiatrist or other Registered medical practitioner;
  • A patient representative (not someone funded or employed by a DH body);
  • A research advocate (not currently employed by a DH body);
  • A commercial company that sells products or services based on NHS medical records;
  • A human rights advocate* (not someone funded or employed by a DH body);
  • NHS England (not HSCIC, who can only speak to particular things);
  • And, if it is a local meeting, a representative of the CCG.

*Please note, medConfidential is not angling for an invitation – though we are always happy to provide a speaker, where we can. There are many great people who understand the fundamental necessities of patient privacy / confidentiality and consent.

Conference organisers should take particular care to ensure that DH Arm’s-Length Body staff aren’t banging the drum for the Department line, while claiming to represent research.

The only way to prevent a repeat of the previous care.data debacles is for people to fully appreciate the diverse views and motivations of the various “stakeholders”. The story of care.data from its suspension in February 2014 to the pathfinder ‘relaunch’ in late 2015 (or beyond) has been characterised by various stakeholders talking to each other – mostly quite sensibly – until NHS England had to ‘join the consensus’, having ignored it for over a year.

It would be a disservice to your audience and to your event to allow NHS England to preserve silos that allow it to pretend areas of controversy do not (still) exist.

medConfidential does not seek unanimity of views; we seek a properly-engaged discussion, fully representing the diversity of perspectives from which a solution can be drawn.

As Phil has said, following a panel discussion at the 2015 Sowerby eHealth Symposium, until patients and doctors, commissioning, research, and commercial (re)users are all in the same room, everyone will be talking past each other.