Care.data: How did it go so wrong?

 
Medical records

There comes a point when the weight of criticism becomes so much that the dam bursts.

For NHS England - and its Care.data project - that point was reached on Tuesday.

When you have a group of bodies as disparate as the British Medical Association, privacy campaign group Big Brother Watch and the Association of Medical Research Charities united in their condemnation, you know you have a problem.

The organisation has defused the problem for now by agreeing to delay the data-sharing project by six months.

But how did it get to this point? After all, the concept of the giant database has the backing of almost the entire medical community, many charities and some of the most influential patient groups.

What is Care.data?

When it is compiled, Care.data will be a giant database of medical records showing how individuals have been cared for across the GP and hospital sectors.

Researchers believe the information will be vital in helping them develop new treatments as well as assessing the performance of NHS services.

The records will be pseudonymised, which means the identifiable data has been taken out. Instead, it will just contain the patient's age range, gender and area they live in.

However, researchers can apply for those safeguards to be lifted in exceptional circumstances, such as during an epidemic. This will need the permission of the health secretary.

While the furore over the scheme may have only exploded into life since Christmas, the actual idea has been 25 years in the making.

Since 1989, the NHS has been collecting data on hospital stays, known as hospital episode statistics (HES).

This has proved invaluable. For example, HES data played a role in uncovering both the Bristol heart and Mid-Staffordshire scandals.

It also provided some of the evidence that led to the introduction of targeted bowel cancer screening in 2006.

The idea with Care.data is to expand this database to include what happens to patients when they are under the care of GPs.

The belief is this could help researchers develop new treatments and improve the monitoring of performance.

But most would argue none of this was communicated by NHS England.

Video animation

Instead, the organisation focused its attention on a leaflet drop of every household in England.

The problem was many people could not recall getting them - a BBC poll last week suggested as many as two-thirds of the public had not seen them come through their letterboxes.

It is not clear exactly what happened here. NHS England says it agreed a deal with Royal Mail that they would hit 99% of households - the industry-considered standard for national mailouts - and the leaflets would not be nestled inside other mail.

But reports have emerged of them being found tucked inside pizza menus and other junk mail.

NHS England video about patient data plans

NHS England is now in discussions with Royal Mail to find out what happened.

A video animation was also produced (the video is on the right), but it went only on YouTube and NHS England's website.

There was no national TV campaign.

Nor was a press conference called to launch the marketing campaign.

That is unusual for a project on this scale.

Officials at the Department of Health, which until a year ago was in charge of the day-to-day running of the NHS, have told me they would never have run it like this.

'Hard sell'

Questions have also been asked about why a decision has yet to be taken about what some consider the most controversial aspect of the project - the sharing of data with private companies.

This will not be decided until a meeting in March. It meant the public were being asked whether they wanted to opt out without knowing who was going to get access to their largely anonymised medical records.

Unsurprisingly, there is now a lot of soul-searching at NHS England.

The organisation admits it made mistakes - particularly in not doing enough to explain the benefits of Care.data.

Some of the explanations offered are understandable. For example, there was a desire not to spend too much on marketing at a time when front-line budgets are being squeezed.

However, the challenge now for NHS England is to work out how they can move on.

One suggestion is that big money should be spent on a TV and radio campaign - although this could be seen as a "hard sell".

Some believe personalised letters should be delivered to households instead of the generic leaflets.

NHS England is also likely to explore the possibility of getting other organisations, such as patient groups and well-known charities, involved in explaining the scheme.

But the fear now inside the organisation - and among the many supporters of Care.data - is that the concept has become so tarnished that whatever is done now will be wrong.

 
Nick Triggle Article written by Nick Triggle Nick Triggle Health correspondent

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  • rate this
    0

    Comment number 354.

    351.Damien "In principle Care.data is a brilliant"

    Oh yea...

    What if the data is less that ideally accurate - rubbish in fact?

    How wonderful is it then?

  • rate this
    0

    Comment number 353.

    I may be naive but is not full informed written consent required or does this high handed approach apply in this circumstance? plus as yet I have to see any mention of how you actually opt out. No I do not want my information in the hands of private companies particularly by this means, I require to be fully infomed then as of right I will make the descision thank you!

  • rate this
    0

    Comment number 352.

    George Orwell was right....
    Too many people need to know everything.
    Even if the info is trivial.
    Fail to see why anyone should ever be interested in who I would want to vote for.

  • rate this
    +1

    Comment number 351.

    In principle Care.data is a brilliant development eg if I travel elsewhere in the UK and have a health problem, my medical records/history could be immediately accessed by the NHS professionals treating me.For research too it's invaluable.The problems stem from a Tory-led govt too aligned with private sector interests(pharmaceutical;insurance)due to Party funding.Hence the mistrust.Rightly so.

  • rate this
    -1

    Comment number 350.

    To be honest and reflecting on the aggregate comments, the very best outcome is for all medical records to be handed over to patients with a label on the front saying take this to your healthcare provider, the NHS closed for business yesterday as you did not trust, you despise doctors and deride the support staff. If you are a taxpayer you will get an absolutely huge tax reduction.

  • rate this
    0

    Comment number 349.

    It went wrong because not enough thought was given to how to get the message over to the public, even though leaflets were distributed and it has been reported in the Press.
    Leaflets should have been available in doctors' surgeries, hospitals, and public information notices should have been published in newspapers, and on television.
    Even then of course many people wouldn't be aware of it.
    Alan

  • rate this
    0

    Comment number 348.

    alan #347:

    "DrJG@343
    I for one am delighted that modern drugs are available for many medical conditions."

    So am I. But how do you judge whether any given drug achieves those things you claim for them? (Hint: If you rely on the information released by the drug companies, you may not make reliable, or even safe decisions.) Why should I have any trust that giving them more data will improve this?

  • rate this
    +1

    Comment number 347.

    DrJG@343
    I for one am delighted that modern drugs are available for many medical conditions.
    These drugs not only reduce suffering, kept people alive but also help people to have an active life which would not otherwise be the case.
    As a taxpayer, pensioner and investor, I'm delighted that these products are made, and the firms involved make a profit from doing so.
    Alan

  • rate this
    0

    Comment number 346.

    johnfromhendon@344
    I'm happy to check my medical history for accuracy but not everyone has the time or inclination.
    Recently I was in hospital; the care was excellent but I agree you have to be on top of things.
    When a nurse give me my prescription my surname was misspelt and my first name had been changed to the female form, implying that I had had a gender realignment.
    Alan

  • rate this
    +1

    Comment number 345.

    johnfromhendon@336
    You didn't throw the leaflet out with the 2 for 1 pizza offer?
    Quite a few people say that they haven't received their tax form.
    I suspect many people glanced at it and threw it away because they were unconcerned.
    Now that activists and conspiracy theorists have jumped on the bandwagon and raised the ante, they've convinced themselves that they never saw it.
    Alan

  • rate this
    +1

    Comment number 344.

    341.alan

    Has it occurred to you that unless you have personally verified that the GP medical history held about you is accurate then you will be forever be the one-eyed chain smoking, legless dwarf with a liver transplant that it says on your record.

    Try to get you head round the reality of GP records - before they kill you!

    Unless the patient checks the record this whole system is pointless.

  • rate this
    -1

    Comment number 343.

    Paul in horsham #45
    "(BTW I thought drug companies handled clinical trials and universities did most of the drug research. Existing reporting mechanisms here are adequate.)"

    Try reading "Bad Pharma" by Ben Goldacre, and you might think differently.

    If pharmaceutical companies want your data, their main interest is likely to be in their profits, not in your health.

  • rate this
    +1

    Comment number 342.

    339.DrJG " very much doubt that there will be any way for your GP to check"

    You misinterpret me.

    I don't trust my GP to do what I have instructed him to do (let alone the system he uses to actually work!)

    I need a way for ME to independently check he has done what he has been instructed by me to do!

    (My GP is already suspended by the GMC for not doing his job in some way! He will not sell up!)

  • rate this
    0

    Comment number 341.

    DrJG@337
    I can't see why the NHS can't hold my health record including my personal details so that when treated the doctor is fully informed.
    Also I can't see why this information can't be aggregated for research and other purposes with my personal details deleted.
    Alan

  • rate this
    +1

    Comment number 340.

    337.DrJG

    Get real! Your expectation is way wide of the mark! (if my experience is anything to go by - 1000 bed hospital in NW London)

    Anaesthetist, when faced with 1000 + pages of my late mother's patient notes "Can you(patient's son) please give me your mother's medical history as I haven't the time to read the file."

    That is real life (and death - inquest soon! - I hope!)

  • rate this
    0

    Comment number 339.

    John_from_Hendon 336:

    "I don't trust my GP and his already proven ineffectively controlled, managed and corrupt IT system to do what I ask.

    Will there be any way to check that a GP has done what he/she was asked to do?"


    From previous, and current, experience, I very much doubt that there will be any way for your GP to check that the system has actually done what they have asked it to do.

  • rate this
    0

    Comment number 338.

    DrJG@321
    The UK spends 9.5% of its GDP on healthcare, about the average of European countries.
    Funding for patients could be increased by cutting doctors salaries and pensions which are among the most generous in the world.
    This proposal is not only aimed at efficiency but also effectiveness by identifying which medications work best for whom in what circumstances.
    Alan

  • rate this
    0

    Comment number 337.

    alan 181:
    "When I go to hospital I want the doctors to have quick access to my full medical record.
    This information aggregated on a depersonalised basis will enable researchers to establish which medications are the most effective in which circumstances."

    You second para. states why this proposal cannot help with the scenario in your first. That relates to the (different) Summary Care Record.

  • rate this
    0

    Comment number 336.

    334.alan "many people did not wake up and read their mail."

    I read mine and I did not receive anything about it! (I only knew about it because of the fuss on the internet.)

    I don't trust my GP and his already proven ineffectively controlled, managed and corrupt IT system to do what I ask.

    Will there be any way to check that a GP has done what he/she was asked to do?

  • rate this
    +2

    Comment number 335.

    330.Steve
    "A good independent website is available to everyone concerned about this project. It was written by a GP."

    Contradiction in terms - "independent" and "written by a GP"!

    Some GPs are excellent (e.g. mine), some are good, some are mediocre, some are appalling. A bit like the rest of society really!

 

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