As an advocate of research patients, NIHR is enabling its primary mission in a safe way. ‘OK to ask’ is entirely compatible with consent – indeed, that’s what the entire campaign is about: asking.
There need be no conflict between patients being interested and wanting to participate in research, but not wishing their sensitive medical records to be sold. Thatis choosing to make this more difficult / conflating secondary uses is a barrier to research, not an enabler.
We can’t let the day pass without also mentioning our friends at AllTrials – campaigning for all past and present clinical trials to be registered and for their full methods and summary results to be reported. Clinical trial transparency is vitally important, and it doesn’t mean publishing individual patient data.
Consensual, safe and transparent. Anything less just doesn’t make sense.