A plan to centralise and share medical records outside the NHS will be implemented this month. This is not very widely known, but what is even less widely known and publicised is that you can opt-out of sharing your medical records if you don’t want them to be used outside the NHS.
You will have to move quickly though, as the cut- off date for doing so may still be 23 June 2021, although the start date for the scheme has been put back.
Opting out involves filling in a simple form and emailing, sending or taking it to your GP. Your GP surgery should have it, or you can look on line. These two links should help.
The single centralised database was due to go live on 1 July 2021, but the government has now decided not to begin data collection until 1 September, due to concerns over privacy.
If you don’t opt out before the deadline, then your medical records will become a permanent feature of the database. You can still opt out AFTER 23 June but the opt out will only apply to future data – any historic data will still be available to bodies outside the NHS.
Centralisation has been tried before, through the “Care.data” programme in 2013, but this was abanadoned due to privacy concerns. But IT security has moved on since then, of course.
NHS Digital, who run the IT systems for healthcare in England say that a new database is needed because the current system, called “General Practice Extraction” is out of date. This seems uncontroversial, because one thing common to nearly all IT systems and designs is their built-in obsolescence.
But there are concerns over privacy. It is one thing to have your medical records and history available to all within the NHS, as these would seem to promote ease of access when treatment is needed, but quite another to have it made available outside the NHS. Information may be made available to academics and commercial third parties and supposedly used for research and planning. NHS Digital says that seeing the wider picture of health records can help decide what new health and care services are required, can inform clinical guidance and policy, and help researchers in medical issues.
This again probably won’t be a problem for most people, but it could be a different situation if the data begins to be shared with commercial bodies possibly selling products, market research or advertising. There will be some who think that is a step too far. The NHS says that the data is not shared with such bodies, nor is it available to insurers, but there can be some relationships that could be seen as a bit of a “grey” area. The NHS says:
“The data will only be used for health and care planning and research purposes, by organisations which can show they have an appropriate legal basis and a legitimate need to use it”
Approvals will be needed, but even so, this could be seen as quite a wide and flexible description. NHS Digital do provide a list of those they share with, updated each month.
There are apparently 55 million patients whose records could be put on the new database and that is a LOT of valuable data for companies to use if they could access it.
The records are to be anonymised, but this can be reversed for “a valid legal reason” via a code held by the NHS. Full addresses, images or videos from consultations, or legally restricted data such as IVF treatment or gender reassignment details won’t be on the database. But nevertheless, we know that there can be inadvertent data breaches.
We are not saying that this centralisation should not happen and we do appreciate the benefits of doctors anywhere, at any time, being able to access patient records quickly, especially in emergency situations where it could be life- saving. This could be more so for those with existing specific health concerns; such things as allergies which could prove fatal if not recognised. So for them, the concerns over privacy may well be outweighed by the need for their safety.
We can also see the usefulness of the data in research and planning, highlighting areas of concern or where more services are needed.
But it has just not been publicised very well until recently and people may not be aware of their right to opt out should they wish to do so. There is not really very much time left to opt out (unless the government decides to change this) and it may need careful thought for some.
Ideally, if you are unsure, a chat with a health professional would be useful, but this may not prove practical at the moment with the NHS as stretched as it is.
On balance, you may think that safety and your health should perhaps take priority. We can’t know for certain, but we would hope that the risks of a privacy breach would be minimal. But it is a matter for you and is your choice.