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CCGs to help develop care.data programme

GP-led clinical commissioning groups in four areas of the country are to help develop the care.data programme as it moves into a ‘pathfinder stage’.

The programme will be rolled out in participating GP surgeries in the CCG areas of Leeds North, West and South and East, Somerset, West Hampshire and Blackburn with Darwen.

Tim Kelsey, NHS England National Director for Patients and Information, said: “There are huge benefits to be had from this programme and this is our opportunity to make sure we get it absolutely right.

“We already collect and share information in so many walks of life. The pathfinder stage is another step on the way to creating a more substantial picture of our nation’s health so we can improve care for patients.

“Since February we have been listening to the views of the public, GPs and other important stakeholders to hear their concerns about data sharing.

“We have heard, loud and clear, that we need to be clearer about the care.data programme and that we need to provide more support to GPs to communicate the benefits and the risks of data sharing with their patients, including their right to opt out.”

Care.data will eventually create a national picture of health patterns so commissioners can study issues such as diagnosis, waiting times and patterns of illness or disease.

Under the care.data programme coded medical details held by the GP will be brought together with hospital data at the Health and Social Care Information Centre (HSCIC).

At no time will anyone’s name or full address or notes of conversations with their GPs be collected.

The pathfinders will be supported in testing different types of communication with patients in those areas, explaining the benefits and risks of data sharing, and making clear their right to opt out from having their confidential information shared for indirect care.

As part of the pathfinder stage, a variety of communications will be tested with patients which will include an individually addressed letter sent directly to every individual or household from their pathfinder GP surgery, a leaflet and other explanatory materials, as well as e mails and texts where the surgery also uses these channels.

To get the benefit of this data it needs to be shared with approved analysts who will have to travel to access it in a secure Data Facility at the HSCIC.

Additional notes

  • The GP practices involved will be announced in due course.
  • The four CCG areas, which represent 265 GP practices altogether, have broad support across their regions to take part in the pathfinder stage. In partnership with the CCGs we are now engaging with individual GP surgeries which are all at different stages in the process.
  • The CCGs were chosen by a selection panel which included representation from the BMA, RCGP, Healthwatch England and NHS England’s voluntary sector Strategic Partners.
  • The sites cover a wide range of demographics in order to test the programme on different social groups.
  • The coded information from GP practices will be linked with hospital data to allow commissioners a better understanding of disease and develop treatments, understand patterns and trends in public health and diseases, and improve patient safety.
  • The Care Act 2014 introduces new clauses which limit the use of the data to the provision of health and social care /promotion of health. This means the data cannot be used for purely commercial purposes such as setting insurance premiums.
  • The approach to the pathfinder stage has been developed and agreed with advice from the BMA and the RCGP’s joint GP IT Committee. Dame Fiona Caldicott’s Independent Information Governance Oversight Panel (IIGOP) has agreed to work with the programme on the quality assurance of the processes which are being developed to identify, work with and monitor Pathfinder practices trialling care.data.
  • Data from the previous four months will be used initially and analysts will begin to look at the data and assess its benefits. After this it will be extracted on a monthly basis.

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8 comments

  1. harold woodall says:

    There is only one reason why this care.data is being set up, and that is to sell your details to third parties… After finding out that the program was devised by ATOS, the company that has caused all the heartache through Ian Duncan Smiths reforms, also strange as it seems Atos devised the program that is used at MOT stations for your vehicle tests, I do not trust this care.data at all.

  2. I fully agree with the previous comments. You seem fully ready to go ahead regardless of the patients views , privacy or well being.
    The opt out should surely be an opt in vote for every individual patient and clinician. We have the summary care already what more do we need and to what expense.

  3. Stella Morgan says:

    I think that making the medical records of patients available is basically a good idea. There’s a good intent behind it, especially when the reason why this was thought of is so that it would be easier to gather that information and study them because they’re stored in a system, and can be pulled up when needed. This makes it easier to monitor health conditions and create cures and stuff, but, I just think it would be better if there is an option to opt out from selling of the data to other agencies so that there is still some respect to confidentiality.

  4. David Bristow says:

    I have tried very hard to impress upon the relevant authorities the dangers involved in the care.data proposal. The four promises the Secretary of State for Health made in March do not appear to have been honoured in full, particularly, that the right, under statute, to opt out of the scheme has been replaced by a constitutional right. Why not make it a legal right as originally promised? It has not been proved to me that our medical records will be safe from insurance companies, employers or prospective employers or mortgage lenders; there are insufficient penalties for misuse and the public are simply unaware of what is being proposed (including some doctor’s surgeries who are often confused between care.data and summary records). There are just too many risks in the whole idea and I will make sure that I have no part in it now or in the future and strongly encourage everyone else to do the same. There may be some health benefits but they are considerably outweighed by the lack of legal safeguards in protecting patient confidentiality. I believe it is common knowledge that when hospital data was shared, recommendations to increase critical illness cover followed suit.

  5. Ian Penfold says:

    Could you tell me please why you are going ahead with this before telling us how exactly you intend to address the concerns that you have been hearing over the past six months?

    In what way are these four CCG areas in broad support across their regions to take part in this trial? Has the support come from patients or does that not matter?

    There may be huge benefits from collecting private data for use by miscellaneous Organisations but the end does not justify the means. In any event the benefits can only be realised if people do not opt out and I can see many doing so as you have not addressed their concerns.

    I am one of those that has tried hard to engage with you to try and make sure that people can be assured that their personal and private information will not be exploited, I feel that you have already made the decision to press ahead regardless and feel very let down.

    Please publish the findings of your listening exercise and tell people how you intend to respond to their concerns before proceeding with this.

  6. D Crawley says:

    “At no time will anyone’s name or full address or notes of conversations with their GPs be collected.”

    That may be so, but enough alternative information to identify individual people will be collected and centralised and linked to individuals’ records. This is an inevitable feature of needing to link data from disparate sources; there has to be a common link for it to be possible. This includes their NHS number, data of birth and postcode. Those facts are available and buried in a variety of documents made available about care.data but never given the same prominence as the quote above. The best way to protect data against intrusion is to make it difficult to access by distributing it widely without any links. This process achieves the opposite; individuals holding their own medical records without any access for medical personnel is the obvious solution. That way one’s own data can only be used for one’s own benefit which is the only reasonable use for it.

    The reason for being selective about what facts get prominence is obvious; most people would deny consent for the use of their data if they understood. I have little confidence that NHS England and ministers will stop the spin and be honest, but I do hope that people will work it out for themselves.

  7. Geoff Gilbert says:

    The last bullet point of the ADDITIONAL NOTES of the https://www.england.nhs.uk/2014/10/07/ccgs-care-data-programme/ website says: ” Data from the previous four months will be used initially and analysts will begin to look at the data and assess its benefits. After this it will be extracted on a monthly basis.”

    Does this refer only to the data from the Pathfinder practices?

    Which are the PREVIOUS four months? Starting from when?

    Will the programme go nationwide at this point, or will there be a second tranche of Pathfinder practices?

  8. Joe Whyte says:

    I do not subscribe to my medical records being available to anyone other than my doctor and local hospital. We have been down this road in the past with the local authorities who, for money, sold our details resulting piles of junk mail being delivered to my home offering to sell me something I never wanted and the local authority having to supply yet another bin to take it all away. Then there is the cost to me as a rate payer to pay the salaries etc. of the additional council workers

    I at present wear two hearing aids and have started to receive mail and phone calls from a private company to go for a private check-up, when I enquired as to were they got my details they said from the national data base. I also get calls for people to come around and show me the medical aids they have to make our life better etc.

    At present I am getting inundated with mail and phone calls for a new boiler system. When I enquire where did they get the information on me, and yes you’ve got it – the National Data Base.

    After America we are the most spied on nation by our Government who assure us the national data Base is for our security and well being. Well let me assure you I have not benefited in the slightest, in fact my privacy has been invaded and all my details sold to the highest bidder but because the Government has allowed it there is nothing I can do.

    I have insured my Doctor if my wishes not to upload my details are not protected then I and my family, will be suing him for breach of contract.