The care.data programme – better information means better care

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.

Extending the care.data 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 a six month 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.

As part of the six month extension, an independent 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.

Further details about the extension and the next steps on the care.data programme, including details of how to get involved and proposals for a phased roll out of the GP data extraction process to begin in the autumn, can be found in a letter to stakeholders from Tim Kelsey, National Director for Patients and Information, NHS England.

As a result of the extension, all existing care.data resources online and in print will be 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 six month 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 formats. These are available upon request by calling the dedicated patient information line on 0300 456 3531.

Remember to visit this website again to review updates and information on local and regional events with patient groups, GPs and other key stakeholders. You can also get in touch about any issue related to the care.data programme by emailing england.cdo@nhs.net.

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 care.data please see here.

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

Related links

care-data-wave-1