Jan 19, 2022Liked by Rory Cellan-Jones

The other group of patients and researchers worth mentioning is UK Biobank. I joined the Biobank at its inception in 2006. It started with a very comprehensive medical examination and health history. Then, over time, I'm invited to complete questionnaires about my physical and mental health, my diet, way of life etc. and from time to time (particularly during the current pandemic) I am sent a kit for taking a small blood sample and sending it back to them (it's very easy and only involves a pin prick). I'm sure one of the lab coats from Biobank can explain what advances can be credited to this mass of data over time, I'm merely one of the lab rats, but happy to play my part.

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We did too, very happily. Interestingly, they recently provided research information regarding whether there is any impact from covid on the brain. I think it was the year before the initial outbreak, UK Biobank had asked for volunteers to undergo MRI brain scans; they were then able to use this group of volunteers to assess whether those who'd subsequently suffered from covid showed any changes (a significant number did).

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This paper shows that there cognitive decline in those who have had COVID.


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Jan 21, 2022Liked by Rory Cellan-Jones

Delighted to see your support for health data sharing. I became a 'use My data' member when I was frustrated that my hospital consultant couldn't see my GP generated test results on his computer system. The GP and the hospital are in 2 different trust areas. My work around was to take my iPad with the NHS App on it, where I can display my test results, into the Hospital for the consultant to see.

The NHS digital strategy seeks to improve such silly situations but their communications around the subject to reassure patients, as you say, are woeful. I suspect that Ministers/Spads/senior officials fearing negative headlines are holding back the Comms plan. Somebody senior needs to be brave and communicate the benefit of health data sharing.

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The sooner we start sharing our data the better for all of us. Yes, there might be privacy issues to be resolved but surely these can be overcome with a little common sense and less fear-mongering.

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I've been working in this area since 2007 with a focus on shared data & information between health & social care and although it would seem simple enough, legacy systems & information management processes in both sectors have made the task incredibly difficult and complicated too.

A big part of the initial problem was how NHS development work was effectively halted on a sharable Summary Care Record & up to relatively recently, nothing was planned to provide a badly needed national facility to achieve this. There are now a myriad of local costly stop-gap solutions in place to fill the gap & few are capable of sharing outside those local areas. But even now, if my care needs are being managed by two trusts, medics still have to manage access to two very different patient record systems. Key to all of the sharing solutions is patient confidentiality & secure, encrypted technology.

Centrally in the NHS & the DoH over this period little in attitude has changed (imo) which is why care.data & the proposed hoovering up of GP information have faltered. Pseudonymisation (not anonymisation) was at the heart of the issues in both cases and a lack of safeguards around sharing patient information with commercial interests eg once it's gone, it's gone.

Covid has changed everything and the lack of available digitised data & information for epidemiology, universities, government, public health & the NHS more generally, exposed this lack of strategy and planning which the NHS is now focused on.

With greater harmonisation we're now beginning to see robust standards, eg the NHS App & local surgery systems, being developed to bring about greater visibility for patients to manage themselves & far wider & consistent data sharing between the various health and social care organisations that need access to it. However, the task is one of turning around the proverbial supertanker and it will take time.

I fully support making health and care data available more widely; however until I have a firm legally binding undertaking that only anonymised data will be shared and all appropriate safeguards are in place, I will continue to opt out of the national scheme.

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We have so much to gain from data sharing - a greater understanding of a number of illnesses, pathologies etc. I have come across a number of start-ups looking to be able to use big data to be able to better diagnose heart problems, eye problems, skin cancer,... The more data they have access to, the better able they are to diagnose rarer problems. A GP and/or cardiologist will only see a few thousand patients during their career, not millions. I am obviously not denigrating the work GPs and cardiologists do - they do a great job but we could have access to so much more as long as privacy and data anonymity is guaranteed.

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I live in the greater Boston area, across the pond. My Docs are part of one of the largest hospital networks- MassGen/Brigham. I can log onto the portal and view test results in real time as the are posted for Docs to see; see my medical history with allergies; check my COVID vaccine records; communicate with my Docs and make appointments. All my Docs, even ones not in the network can access my records. Good luck to your efforts


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