It is so frustrating. As patients, my husband and I signed up to UK Biobank at its outset, recognising its research potential. I hope that the college can find ways to encourage GPs to, in their turn, encourage patients to participate, or at least to flag up the existence of UK Biobank.
Linking with Gp’s imho essential for research , BUT biobank is missing/ believe not allowing /does not have a facility to include another area of information which can be extremely beneficial as to medical history of a person.
eg to be able to upload/ include information for a participant from private medicine and overseas examinations of a patient.
I , like very many others have medical history going back in my case 50 years from employer
funded and personal annual check ups and because of international expat travel extensive- particularly US.. thorough medical analysis. (Also brain scans)
Such longer term/and therefore younger patient information could be invaluable in tracking the path /development of things
Sincerely,
A response would be most useful to confirm the post has been seen/read
If I were a gp I’d worry that the data is exactly what makes the NHS valuable and that Hancock will have spotted that a precedent has now been made and so it’s a matter of time until it’s made available to the Private Healthcare market.
Giving the go-ahead to releasing patient data would make them complicit.
There is a MS Register that is managed from Swansea Uni that tracks data from pwMS and makes it available for research and users regularly update the mental health sections with all the other information so it’s connected. The MS Society provides the funding for it I think.
This was to be my point exactly and without explicit consent from individual patients, GPs are not permitted to share the confidential personal information they hold on behalf of their patients.
For those who have given explicit consent, there is no simple blanket "push button" process to share with anyone and given their present workload, the prospect of even employing someone to do this on their behalf & on behalf of the consenting individuals is daunting. Bear in mind too, GPs are remunerated based on services they provide and this upload won't be one of them.
It's easy for us patients to wring our hands and say "something must be done". But it's not simple & Data Protection legislation is there for a purpose.
Biobank can work but until the dysfunctional DoHSC & the NHS come up with feasible secure processes for patients & their GPs to share information more widely and securely, the issue will remain.
It is so frustrating. As patients, my husband and I signed up to UK Biobank at its outset, recognising its research potential. I hope that the college can find ways to encourage GPs to, in their turn, encourage patients to participate, or at least to flag up the existence of UK Biobank.
Linking with Gp’s imho essential for research , BUT biobank is missing/ believe not allowing /does not have a facility to include another area of information which can be extremely beneficial as to medical history of a person.
eg to be able to upload/ include information for a participant from private medicine and overseas examinations of a patient.
I , like very many others have medical history going back in my case 50 years from employer
funded and personal annual check ups and because of international expat travel extensive- particularly US.. thorough medical analysis. (Also brain scans)
Such longer term/and therefore younger patient information could be invaluable in tracking the path /development of things
Sincerely,
A response would be most useful to confirm the post has been seen/read
Thankyou
So frustrating. I thought all this was resolved, a truly backwards move. Perhaps we can raise this with Baroness Nicola Blackwood?
If I were a gp I’d worry that the data is exactly what makes the NHS valuable and that Hancock will have spotted that a precedent has now been made and so it’s a matter of time until it’s made available to the Private Healthcare market.
Giving the go-ahead to releasing patient data would make them complicit.
There is a MS Register that is managed from Swansea Uni that tracks data from pwMS and makes it available for research and users regularly update the mental health sections with all the other information so it’s connected. The MS Society provides the funding for it I think.
The fundamental question that needs answering is, whose data is it?
This was to be my point exactly and without explicit consent from individual patients, GPs are not permitted to share the confidential personal information they hold on behalf of their patients.
For those who have given explicit consent, there is no simple blanket "push button" process to share with anyone and given their present workload, the prospect of even employing someone to do this on their behalf & on behalf of the consenting individuals is daunting. Bear in mind too, GPs are remunerated based on services they provide and this upload won't be one of them.
It's easy for us patients to wring our hands and say "something must be done". But it's not simple & Data Protection legislation is there for a purpose.
Biobank can work but until the dysfunctional DoHSC & the NHS come up with feasible secure processes for patients & their GPs to share information more widely and securely, the issue will remain.