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Together we can get care.data absolutely right
Tim Kelsey, NHS England’s National Director for Patients and Information, explains the important next steps in the programme:
I thought it would be helpful to update you on the latest developments around the care.data programme.
In February, we announced a six month extension to the start of care.data so we could ensure stronger safeguards around the uses of the data, clarity about the rights people have to opt out, and that appropriate, accessible information was available for professionals and the public.
Since then we have been listening to the views of patients, the public, GPs and stakeholders on how best to build trust and confidence in this project.
Another important development has been to establish a Care.Data Advisory Group. Ciaran Devane, chief executive of Macmillan Cancer Support and a non-executive director of NHS England, has agreed to chair the group whose membership, drawn from across health and care, includes the BMA, the Royal College of General Practitioners, and Healthwatch, as well as voluntary organisations and privacy experts. This group has just met for the third time.
Locally, stakeholders, including GPs, patients and public, health and care representatives, are taking part in debates and workshops to air their views and help ensure that, together, we get the approach absolutely right.
In light of all these conversations, we are now proposing to phase the implementation of care.data and work with between 100 and 500 GP practices in the Autumn to test, evaluate and refine the data collection process ahead of a national roll out.
We do not subscribe to artificial deadlines here – we will roll it out nationally only when we are sure the process is right.
The Government has already acted to put before Parliament legislative proposals that mean all uses of the data will be subject to robust independent scrutiny and that no uses will be permitted that are not for the benefit of patients.
An organisation that wanted to handle the data on its own premises would need to demonstrate it could safely do so, or risk being barred from doing so.
In all cases, there will be complete transparency of all those permitted access to this data by the Health and Social Care Information Centre and for what purpose. In this way patients will know how their data has been used for improvement of services.
We cannot improve the safety of patients, and the quality of their care without understanding what happens to them. Data sharing has the power to transform health services.
Care.data is an integral part of this vision. It’s a programme of work which aims to consistently and systematically use and join up data across hospitals and general practice and make it available to the people who can use it to make services better – clinicians, commissioners, researchers, charities, patients and public – in safe ways that minimise the risk to a person’s privacy being compromised in an age of increasingly sophisticated digital threats.
Data empowers commissioners to ensure the highest standards of care and clinical safety are met – or shout loudly and respond quickly if standards drop.
Data can tell us what happens to people cared for outside of hospital and whether their needs are met, or not.
Data supports researchers to develop new medicines and improve our understanding and treatment of disease.
In future, this can help prevent cases such as Alison, from Hampshire, who went to her GP suspecting she had a brain tumour, but was prescribed painkillers. She was eventually diagnosed in A&E after a seizure and died less than a year later.
One in four cancer cases is diagnosed in an accident and emergency department, it has been revealed. Late diagnosis costs lives: these patients are twice as likely to die within a year than those referred to a specialist by their GP. A report by Macmillan Cancer Support published this week concludes that better data on the outcomes of these patients and understanding geographic variations in patterns of diagnosis is key to improving life expectancy.
I’d like to thank everyone who is giving their time and expertise to these discussions. Data sharing between professionals, patients and public is the precondition for a modern, sustainable health and care service.
This is the first in a series of updates on care.data. I hope you will help shape it by giving your views on the care.data programme – firstname.lastname@example.org
- View more information on care.data.
Please give full details to support the following statement given above:
“The Government has already acted to put before Parliament legislative proposals that mean all uses of the data will be subject to robust independent scrutiny and that no uses will be permitted that are not for the benefit of patients”.
Security is the rub. Until I hear full details of how my data will be protected and feel confident about those measures, I shall stay opted out.
This data sharing was put on hold for a while, supposedly to give the public more time to understand what it actually entails. What has actually happened is that hardly any information has been forthcoming since that announcement and it seems as though the extra time was given so that people would forget about it and then it could be slipped through unnoticed.
Also, there is confusion between the sharing of the summary care record and the sharing of data for research etc. These are two separate things, but because they are being put through at the same time, more or less, most people are not aware of the difference. The summary care records will indeed help with people’s NHS care by sharing between GPs, hospitals, etc. The other data sharing is completely different and our details will be sold for research purposes and,no doubt in years to come will be sold on for insurance purposes etc. and this should be made clear. What if the NHS doesn’t exist in the future? Who will these records belong to then?
Dear Mr Kelsey,
I have just been to the Open House forum in Leicester today and am concerned primarily, as were others at our table, that the information you gather from patients will be used to facilitate tailor-made private companies to benefit, who sit on the periphery of the NHS but who don’t have the NHS ethos and care at the core of their companies, which means they can never provide what the NHS provides.
Also, of more concern, is that the privatisation of all these peripheral services are being rolled out across the United Kingdom with no transparency at all, which is why I wonder why you are in the position of both promoting transparency and knowing that this is happening right now? Where do your and this groups loyalties lie? I think that most people cannot stand the fact that so much is being done without the knowledge of the people. After all, it was the taxes of our fathers and fore-fathers that paid for the NHS, why should individual companies benefit from what belongs to the people of the UK while this silent sell off is occurring?
Please can you let me know what you think.
Nhs LPFT Volunteer
As a patient, ex Carer and ex Senior partner of a large GP practice, I am concerned at how and what data is collected and its accuracy.We opted in to a Summary Care record but how do I know what is on it? I asked for my Summary and admin did not seem to know what I wanted and when I got it, it contained irrelevant information and did not put down conditions that I thought were relevant or those for which I was currently receiving treatment.
I agree – this should be a proper opt-in rather than opt-out. If it were, I would support it, as it is I have to share my concerns with patients, inevitably the optout then rises.
If you cannot sell it to the GP’s you will never sell it to the patients!
I am still concerned about the OPT/OUT option democratically it should be you OPT/IN to the scheme it seems to me your railroading it to get it through. You see the article I read in the Guardian on the 24th Feb 2014 about the 47m inpatients in the Hospital between1997-2010 their medical records ,dates of birth and postcodes were obtained by an Insurance Society to refine their premiums This concerns me as well.I know I have mentioned it before to one or two but got no response from anyone. If its wrong then you should rebuke the Guardian .Yours sincerely D.Peach
” all uses of the data will be subject to robust independent scrutiny ”
What are the plans for ensuring scrutiny is both robust and independent?.
“An organisation that wanted to handle the data on its own premises would need to demonstrate it could safely do so, or risk being barred from doing so.”
Does this mean that queries will by default be run within the HSCIC safe haven?
I am still not reassured that this project is being brought back on track in terms of patient and professional confidence. A delay without a radical rethink and significant reassurance that well founded concerns have been listened to and robust protection measures implemented is for nought unless used to adjust confidence.
I know that I’m not alone in believing there still remains a road crash crisis of confidence in the care.data programme. On the one hand we are being told that the aim of the project is to contribute to the care of patients but it is the management of the sensitivities surrounding the handling of sensitive data that significantly risks the project’s implementation and realisation of those laudable aims.
Will loosely anonymised data capable of being used to help triangulate patient identity continue to be sold to industry for example? Being reassured that the data is secure from hackers when data sets are being sold to industry is not at all reassuring. I know what sort of NHS I want to work in and it isn’t one that can’t anticipate the issues and handle sensitive projects from the outset with the sensitivity that is deserved otherwise we end up in the very place we are with an important project critically bruised by a botched implementation.
As one of 211 CCGs we are closely watching how Parliament, NHS England and HSCIC is managing the care.data ‘pause’. Many of our 620,000 patients are worried and are asking their GPs what is happening with this. Our dedicated, motivated and massively busy GPs and their teams are wrestling with three major tensions: Health and Social Care Act legislation, DPA and ICO data controller responsibilities and lack of clarity and information so far about future progress with care.data. As a CCG and as member practices we all appreciate the benefits it care.data might bring if implemented nationally in an appropriate manner – but we have to pick up the pieces through conflicting responsibilities (H&SC Act vs. DPA requirements) within an arena of uncertainty, lack of clarity and public concern.
It is helpful to have this entry on Dr Tim Kelsey’s blog. But how will the “100 to 500” practices be approached before Autumn 2014 to volunteer to “to test, evaluate and refine the data collection process ahead of a national roll out”? As a CCG Board Member and Chief Clinical Information Officer (CCIO) I am keen to know. As a full-time jobbing struggling GP I am equally concerned. As a patient I await and watch with interest.
Dr Mike Walton
GP Board Member and CCIO
NHS Herts Valleys CCG