The programme – collecting information for the health of the nation

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 programme gives an opportunity for each of us to help the NHS provide high quality care for all.

Extending the programme

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 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 programme.

As part of the programme extension, an advisory group on has also been established. The group is chaired by Ciaran Devane 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. pathfinder stage

NHS England has also confirmed that there will be a phased roll out for the programme, starting with between 100 and 500 GP practicesat the end of 2014. 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 opt out, can be refined and tested with complete transparency. NHS England regional teams are liaising with Clinical Commissioning Groups (CCGs) who had already expressed an informal interest in becoming pathfinders. The programme confirmed in October the CCGs that are taking part in the pathfinder stage as: Leeds North, Leeds West and Leeds South and East, Somerset, West Hampshire and Blackburn with Darwen.

Further updates on the programme and the pathfinder stage will be posted on this web page in due course. See also the related links below.

The Independent Information Governance Oversight Panel (IIGOP), chaired by Dame Fiona Caldicott, has agreed to advise the 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. Their report to the programme board in December 2014 on the pathfinder stage is available on the website.

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 programme, as is protecting confidential information.

Further updates on the 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 resources online and in print are being reviewed. Visit this web page again soon for a new information leaflet, an infographic to see how the NHS uses patient data and other resources to find out more.

If you would like further information on local and regional events with patient groups, GPs and other key stakeholders, or have queries/comments about any other aspect of the programme, please see our get involved page or email

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.

healthcare-buttonIf you are an NHS healthcare professional and would like more information about please see here.

patient-buttonIf you are patient and would like more information about please see the NHS Choices website here.

Related links