Should I be concerned about NHS Digital accessing my medical info?
Update: Since this article was posted, the government have pushed back the 1 July data share to 1 September.
There’s been a fair bit of talk in the media about an opportunity to opt out of having your medical data currently kept by your GP practice, shared on the NHS’s new digital database. This information transfer will begin to happen from 1 July 2021.
Many people have expressed concern that they simply do not know enough about what will happen to their data once it has been shared, and want the government to give them more time and to explain more fully what will happen. They are also annoyed they are having to opt out rather than opt in.
Sharing is good isn’t it? What’s the problem?
Some people will be quite happy and not see this as a problem at all; NHS Digital says the patient data will be used for research and analysis purposes, and will help them understand whether the health and care system as a whole is working for patients. Generally speaking the more we know about a subject, the more data and analysis is conducted, the better (one hopes) systems can be shaped into being more effective and beneficial. NHS Digital gives an example: GP data which has already been collected, is being used to find effective treatments for people with Covid-19.
Even the BMA and Royal College of GPs agree that GP data is important in analysing public health as a whole. But they want the government to run a public information campaign to fully explain what will happen, and they say it is unreasonable that GP practices are being involved in this data share at such a crucial time.
However, some people have voiced concerns about what might happen to the information – particularly in the future. As things stand, NHS Digital insists the patient data collection is for research purposes and will not be shared solely for commercial purposes. They say that only organisations which have been approved by an independent group (known as IGARD) will be able to access the data.
In addition, NHS Digital say the data would not include your name and address, and all other potentially identifiable information (your NHS number, post code and date of birth) would be anonymised. However it does admit that in certain circumstances the process could be reversed so your identifiable information could be readable.
What should I do if I want to opt out?
For those who want to opt out of the patient data sharing, known snappily as GPDPR, there is a form to print out, fill in and send to your GP practice (as if they didn’t have enough to do). If you do this before 23 June 2021, your information will not be transferred to the new database. If you opt out after that date, then your information will not be collected after the opt out form has been registered. So for example, if you opt out on 1 September, then NHS Digital will only have information on you up to 1 September. You can also opt back in again at any time! So perhaps it makes sense to opt out now and then opt back in again when/if your concerns have been put to rest.
To make matters more complicated, (sorry,) there are two different kinds of forms: Type 1 Opt-out and National Data opt-out.
The Type 1 opt out is a hard copy form which is sent to your GP practice registering your preference to stop NHS Digital from collecting your data. This needs to be sent in by 23 June 2021 for them not to collect or share any information on you or a dependent. This form may be replaced in the future. NHS Digital or your GP practice will let you know if/when that happens. A link to download it is here: https://medconfidential.org/wp-content/uploads/2021/05/Type_1_opt-out_letter.pdf
The National Data opt-out means NHS Digital will still collect your GP-held data, but they can’t share it. It involves all information your GP has, including for example, hospital data. However, NHS Digital say in certain circumstances, they will still share your data. Examples of this are: where it is a legal requirement to do so, or where there is a public interest – such as helping to manage contagious diseases such as coronavirus. This is an online opt out. The link is here and you need your NHS number or postcode and your mobile phone to get a code. https://www.nhs.uk/your-nhs-data-matters/manage-your-choice/
Who or what is NHS Digital?
NHS Digital is part of the Department of Health and Social Care, tasked to provide information, statistics and data for clinicians, analysts and the NHS. They also run the NHS website. They have been running since 2013.
For more information on NHS Digital and why they want to collect and use your GP-held data, see: https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-practice-data-for-planning-and-research
For more information on Medconfidential see: https://medconfidential.org