There is a review going on to the use of health data for research and analysis in the UK. One of the areas being looked at is how we can ensure privacy is preserved in secondary use of data. If anyone can think of a way of doing that then maybe they should send an email to them outlining their experience.
Do you think our experiences with InterConnect of reusing existing study data via DataSHIELD would be appropriate? And do you have any insight about how the input would be delivered to them? For example, can I send a brief email describing things, and then they ask for specific details, rather than writing some massive overview?
Can’t believe it’s taken me three weeks to reply to this! I’ve had a chat to some of the people involved and I think a use case from/about DS would be good. Maybe highlighting a couple of projects it has enabled, perhaps mentioning its flexibility with stuff like omics and geo, and FHIR on the horizon. If you can tick off a couple of the points in the ToR doc that would be good. I wouldn’t go overboard - maybe half a page. I think there is a desire to address the amount of work needed to get access to data, so mentioning the notionally lower governance burden might be prudent too.
No problem! I thought it was worth a punt so have cobbled something together and sent it over. Let’s hope it’s not too late…