As part of DigiTrials, and of the Cabinet Office’s desire for a health commitment to OGP NAP 5, building on the successes of the UK’s COVID response, a draft for thought/discussion:
“DigiTrials” is the research mechanism between Oxford University and NHS Digital, to facilitate faster and easier clinical trials, supported by HDR, OLS, etc.
The flagship discovery for COVID-19 was dexamethasone, but it is notable that those in the trial probably have no idea that they were involved. Those who received the drug were unconscious at the time, and some / most were involved in the trial as part of a control group, i.e. they didn’t get the drug. (Those people still helped, of course, just as much as the people who did get the drug, and the trial wouldn’t be a trial without them).
Commitment: We will allow those patients involved in DigiTrials, especially where they are part of a control group in digitally-driven trials, to see which trials they were involved in, and the outcomes of those trials.
Stretch 1: Apply to all NHS Digital-supported clinical trials.
Stretch 2: Data Release Statements for all NHS patients.