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.