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Peter Coghlan's avatar

Many thanks Rory for again highlighting this issue.

I expect the conference will also have discussed the privacy concerns around the sharing of patient data which were at the core of the problems with care.data and latterly, its recent reincarnation as the confusingly named GPDPR.

As you stress, patient data has incredible value to a wide variety of interests, especially patients themselves. However, such sensitive personal data does require extensive safeguards to ensure it can't be exploited by less well-intentioned organisations (simplistic example travel insurance).

Neither care.data or GPDPR offered those basic safeguards which would have ensured personal information could not be exposed or traced back to individual patients, and both schemes have only served to undermine trust.

Like many (most?) other chronically ill patients, I fully support the sharing of patient data for research and development and I'll be at the front of the queue when those safeguarding measures are in place.

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David's avatar

Couldn’t agree more! But of course I’ve had to get into my 60s and develop some chronic conditions before I realised how important this issue is. Doing my bit now through the organisation called useMydata.

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