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
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
The principle is fine, it is the practice that has been at fault. Too many examples of this shared data being used without permission and for profit to trust those whom the Government or other institutions share it with. Stronger safeguards required and, as has been said below, greater punishments for those responsible for breaches.
Jabs. Far too many people are too stupid, lazy or idle to get free vacs. How vaccination rates break down acroos society i dread to ask. Most just see covid now as bad dose flu. They dont want to know or deny its existence. Best you can do is lookafter yourself and family.
That is possibly one of the issues particularly if they're accessing information from unreliable sources. But I think it's more complicated. As a a very regular visitor to the eye unit with my 94yr old mum I see/hear about a variety of issues preventing those over 75 being treated which isn't unique to eyes. *Appointments arriving late or not at all *Patients lost/drop off the system *Transport *Nobody to escort them to & from *Ignorance/poor education & poss illiterate *No smart phone or don't know how to use a smart phone *Friends spreading misinformation *poverty. During the pandemic my mum wouldn't have been vaccinated if she hadn't got my support. Indeed many elderly sadly go without the medical support they desperately need due to many hurdles. People of my age group late 60s & older are all to aware of the issues surrounding not being vaccinated but they're perhaps not so savvy regarding misinformation or simply face hurdles accessing medical care.
Thank you. I understand and accept what youre saying. My wife works for Age Uk and they can help folks with so much, may i suggest looking to see if they can help. If i can help, please ask. Regards.
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
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
The principle is fine, it is the practice that has been at fault. Too many examples of this shared data being used without permission and for profit to trust those whom the Government or other institutions share it with. Stronger safeguards required and, as has been said below, greater punishments for those responsible for breaches.
Jabs. Far too many people are too stupid, lazy or idle to get free vacs. How vaccination rates break down acroos society i dread to ask. Most just see covid now as bad dose flu. They dont want to know or deny its existence. Best you can do is lookafter yourself and family.
That is possibly one of the issues particularly if they're accessing information from unreliable sources. But I think it's more complicated. As a a very regular visitor to the eye unit with my 94yr old mum I see/hear about a variety of issues preventing those over 75 being treated which isn't unique to eyes. *Appointments arriving late or not at all *Patients lost/drop off the system *Transport *Nobody to escort them to & from *Ignorance/poor education & poss illiterate *No smart phone or don't know how to use a smart phone *Friends spreading misinformation *poverty. During the pandemic my mum wouldn't have been vaccinated if she hadn't got my support. Indeed many elderly sadly go without the medical support they desperately need due to many hurdles. People of my age group late 60s & older are all to aware of the issues surrounding not being vaccinated but they're perhaps not so savvy regarding misinformation or simply face hurdles accessing medical care.
Thank you. I understand and accept what youre saying. My wife works for Age Uk and they can help folks with so much, may i suggest looking to see if they can help. If i can help, please ask. Regards.