Sharing information in the NHS helps ensure that the quality and safety of services is consistent across the country. It can also highlight different diseases and conditions that may require more NHS investment. The care.data programme gives an opportunity for each of us to help the NHS provide high quality care for all.
In recent months, NHS England has heard from GPs, professional bodies and patient groups that more needs to be done to ensure that patients and the public have a clear understanding of NHS England’s intention to use patient data held by GP practices for purposes beyond direct health care. In particular, greater assurances are sought on issues such as patients’ right to object, protecting privacy, the burden on GPs, and the controls around how data held by the Health and Social Care Information Centre (HSCIC) will be accessed and used.
This is why NHS England announced an extension to the proposed roll out of the care.data programme, until the autumn, to raise awareness, listen and act on the views of patients and key stakeholders, and to discuss both the benefits and risks involved. More discussion, debate, reassurance and action is needed around issues such as ensuring the public are aware of their choices and are empowered to take informed decisions based upon a clear understanding of the issues. See here for details of how to get involved in forthcoming discussions about the care.data programme.
As part of the care.data programme extension, an advisory group on care.data has also been established. The group is chaired by Ciaran Devane, who is Chief Executive of Macmillan Cancer Support and is one of NHS England’s non-executive directors.
In May, the Care Bill received Royal Assent and became the Care Act and for the first time made clear a statutory basis for sharing information that will enable the tracking of patient outcomes across health and care services. The new law means that a person’s data can only be shared and analysed when there is a benefit to healthcare, never for other purposes, and that all uses will be scrutinised with full transparency by an independent statutory body. In addition, there will now be a legal basis for people to stop their data being shared if they wish to.
NHS England has also confirmed that there will be a phased roll out for the care.data programme, starting with between 100 and 500 GP practices in the autumn. In this way, the best ways of supporting GPs to ensure patients are informed of the purposes of this data sharing, its safeguards and how they can object/”opt out”, can be refined and tested with complete transparency. NHS England regional teams are in discussion with Clinical Commissioning Groups (CCGs) who have already expressed an informal interest in becoming pathfinders. Once these discussions are complete, the care.data programme will confirm which CCGs are taking part in the pathfinder stage. It is envisaged that between two and four CCGs will become care.data pathfinders.
The Independent Information Governance Oversight Panel (IIGOP), chaired by Dame Fiona Caldicott, has agreed to advise the care.data Programme Board and Senior Responsible Owner on the first phase of the implementation of the programme in its role advising, challenging and reporting on the state of information governance across the health and care system in England.
Dame Fiona is known across the NHS for the institution of ‘Caldicott Guardians’, the individuals responsible in every NHS and local authority organisation for making decisions about sharing identifiable information. This requires balancing the public interest of protecting confidential information with the public interest for sharing the information.
Ensuring that information is shared for best care and to promote excellent research is central to the vision encompassed by the care.data programme, as is protecting confidential information
Further updates on the care.data programme will be posted on this web page in due course. See also the related links below.
As a result of the extension, all existing care.data resources online and in print are being reviewed. However, until that review is complete, you can still find out more by browsing the existing webpages and by watching the short video produced prior to the current extension. To view it with subtitles, click on the caption icon within the video player. This video is hosted on NHS England’s YouTube channel. If you have difficulty viewing it, you can also see it on NHS Choices.
You can also read the information leaflet Better information means better care, which was delivered to households in England during January. The leaflet is also available in Braille, easy read and large print, along with an accompanying British Sign Language video. These are available upon request by calling the dedicated patient information line on 0300 456 3531.
If you would like further information on local and regional care.data events with patient groups, GPs and other key stakeholders, or have queries/comments about any other aspect of the care.data programme, please see our care.data event page or email firstname.lastname@example.org.
The patient information line is also there to answer any questions or concerns that people have about how their data are used for these purposes. The information line is open Monday to Friday, 9am to 5pm. The number to call is 0300 456 3531. A text phone service is also available on 0208 7428620.
If you are an NHS healthcare professional and would like more information about care.data please see here.
If you are patient and would like more information about care.data please see the NHS Choices website here.