What medConfidential will be looking for in every party’s Manifesto is rather simple:
Will patients know how their medical records have been used?
A straightforward “Yes, they will” or “No, they will not” will suffice.
Every flow of data into, across and out of the NHS and care system should be consensual, safe, and transparent – there need be no conflict between good research, good ethics and good medical care.
We shall provide more detail on how this relates to current issues like Genomics and AI in due course – but the question to which there must be a clear answer, for whatever the future brings is: Will you know how data about you is used?
We would like the Government to honour its commitment to a statutory National Data Guardian; to closing the commercial re-use loophole, putting promised safeguards and sanctions in place, and implementing transparency on all data flows across the health and social care systems – but we understand these are details that may not make the cut for a short manifesto.
Given all that has happened, would you trust any party that fails to commit to you knowing how your medical records have been used?
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