New animation will raise further awareness about use of NHS patient data

A new animated video has been developed by NHS England and the Health and Social Care Information Centre to further raise awareness of how patient data are set to be collected and used to help improve care for all.

The video, “Better Information Means Better Care”, accompanies a leaflet of the same name that is currently being delivered to every household in England. These materials are part of a wide range of awareness-raising work that NHS England and the Health and Social Care Information Centre are doing to support GPs in ensuring their patients know about how data are used and the choices available to patients.

For decades, the NHS has been using information from health records for purposes other than providing direct care, for example to support research and to help plan new health services.

The animation presents a simple way for GPs and other NHS staff to explain why we need to upgrade our systems to collect information that is missing at the moment. By incorporating this missing information, we will obtain a much more rounded picture of the quality of care across the NHS and social care.

Dr Geraint Lewis, Chief Data Officer at NHS England, said: “NHS England is supporting GP practices in making patients aware of how their information is used to help improve care for all. This month, we are sending a leaflet to every household in England to help raise awareness and to explain to patients the choices that are available to them. It is important that we communicate this message in a range of different formats, so as well as the leaflet, we are using posters in GP practices, radio and TV interviews, press articles, and this new animation.

“Taken together, I think these communications will help improve patients’ understanding of how the NHS uses their information and the fact that they have a choice.”


  1. Dr Lisa Silver says:

    By using a leaflet drop to households which came with all the other junk mail including Dominos Pizza leaflets was not appropriate over something as sensitive as data and what happens to it. I have large family of grown up kids that live with us and they simply did not see the leaflet, it more than likely went out with the bin when the housekeeper picked up the post. Each person needs to be written to with an option to opt in or opt out.

    The public need absolute assurance that a) the firm running and caring for the data is trustworthy and precisely whom it will be looked at.

  2. Bill Davice says:

    I think that the lack of information from NHS ENGLAND is approachinhg a scandal. I am well-informed, IT literate, read sevral newspapers and am active on social media, but I discovered about Care.Data for the first time last week as a chance encounter on Facebook.
    I have since visited the ICO and studied their Code of Conduct. It is clear to me that NHS ENGLAND has failed signally to approach the minimum requirements.Indeed it seems that the leaflet I never received contains serious misinformation.
    Your Junk mail has not reached my town and no other publicity of any kind has been directed to anywhere that I visit.either physically, on line or in the media. Prsumably when legal action begins it will be the GPs not NHS ENGLAND who will face action. Disgraceful failure of duty.

  3. Carol Munt says:

    The public have not been given enough information about NHS use of patient data and yet you have this really useful animation. .
    But how many people will see it?
    As far as I know you haven’t yet put it on T.V. to make it accessible to us, the general public, who are being asked to make an “informed choice” about opting out (or staying in).
    With an issue as important as this it’s not enough to say “it’s on the internet”.
    If we don’t know it exists, why would we look for it?
    By the way, I haven’t had anything in the post.

  4. george pinker says:

    Dear Sir or madam I have just had to be rushed to hospital. and it turns out I ‘m diabetic. I have been discharged and an appointment to see my Doctor was already made earlier by me and since my release from Hospital an a appointment has been made for the same day to see the Nurse on this subject.
    It suddenly occoured to me that since my dear wife died and i live aloan that the days between now and my appointment is five days. and what food to buy my fridge is full so can or can not eat what is inside. and relized I have no idea so I have look on the internet(and may be I’m look at the wrong place) have been so far unable to see what I can and can not eat. so is it possible internet or other wise

    for me to find out about what I can eat?

  5. Robert Murray says:

    Data is to be minimised. At what point in the process? At gp surgery? At some point after? Will my data be anonomised BEFORE it starts its journey thro the ether?

  6. John Smith says:

    None of these gimmicks can excuse the failure to obtain proper consent after properly informing patients. Stop the process now and allow people to opt in after informed decision making rather than paying lip service to confidentiality. I have now lost faith in the NHS to properly protect my confidentiality and encourage everyone I know to opt out – at least until proper safeguards are in place.

    • Michael Vidal says:

      While I share John Smith’s concern that it is an opt out and not an opt in the more important question is whether any data has already extracted as information on this originally sent four months ago and the extraction of data was due to start in the autumn.

    • Carol Munt says:

      In reply to John Smith and everyone else who has reservations about the confidentiality of their patient data I would suggest that benefits of the scheme far outweigh any possible problems that they may envisage or that some areas of the press are forecasting.
      At present we have a system where health professionals are hampered by not being able to access our records quickly.
      Take as an example my late Mother’s case.
      She was diagnosed with Dementia by hospital A. On admission to hospital B with a severe urinary tract infection (UTI) and dehydration they had no access to her notes from A. Nor did they have immediate access to her GP notes showing previous UTI’s that had been successfully treated at home. As her carer I had to give them this information. Instead of immediate treatment it was 6 hours before she was put on a drip to re-hydrate her. Six hours in A&E. Six hours of repeated questions. Six hours of discomfort for an 89 year old frail and bewildered lady who could have been treated within half an hour if all her medical records had been available electronically.
      I could give many more examples, some more harrowing.
      Before choosing to opt out of the system, take a few minutes to work out what the advantages are for you. Have you ever despaired at the number of times you have to repeat the same information to a number of different people when attending a hospital appointment? Repeated what medication you take, what childhood ailments you had, what allergies you may have? The list is endless and not only wastes time but also delays the outcome of your visit whether diagnosis or treatment.
      Finally, here is my advice, join your GP patient group and have your say. Patients have, as a right, to have their voice heard and their views taken into account. Exercise your rights, make your views known, then you will have a system that is designed with patients for patients.

      • Marcus Baw says:

        @Carol munt
        it is crucial to realise that the program being discussed in the article (care. data) is NOT for your direct patient care. Your GP data will not be available in hospital any more than it was before. This program is about sharing your data (in supposedly anonymised form) with paying organisations. NHS England are deliberately allowing this confusion to persist however since it suits their purpose.