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gilliosa spurrier's avatar

The problem here is that we must NOT leave health data sharing "to trust and altruism" - we have seen with the issues around the UK Biobank that it is not only shared and used for good - but also for profit. The mega data handlers/users/sellers are ready to promise anything and pay for this gold dust. Patients are often more willing to share their health data in the hope of benefits for them and their community, we owe them relevant research and return on engagement. We need to make sure there is no TRUST involved, but only good solid guardrails, cross-stakeholder monitoring, respectful data/research return and explanations to citizens, and swift effective, retribution when things go wrong. Genomic data (which can identify those that come after us) is even more tricky. As a Parkinsons patient Sara Riggare's views on patient data use is well worth a read : https://www.nejm.org/doi/full/10.1056/nejmp1704485

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Greg's avatar

I don't think privacy concerns are exaggerated. The NHS doesn't seek consent from people, misuse the word 'anonymised' to persuade people their data isn't being linked and shared.

Its Also about patient autonomy - its simply polite to ask people to share their data, especially when healthcare professionals go on about consent, trust, privacy, confidentiality and all the rest of it

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