care.data Advisory Group Open Meeting

The Chair of the care.data Advisory Group, Ciarán Devane, invites you to participate in their third public discussion about the work they are developing to inform and assure the programme known as ‘care.data’.

The NHS in England already has some of the best information and data systems in the world and our hospital episode statistics (HES) system has been collecting information about every hospital admission, nationwide, since the 1980s. However, we are currently missing information for most of the care provided outside of hospital which means there is a gap in our knowledge. For example, we would like to know the average time taken – in every area of the country - between someone seeing their GP with bowel symptoms, to being diagnosed with colon cancer at the hospital. In order to know this, we need to link GP and hospital data.

The intention of the care.data programme is that the NHS will find out about the quality of care being provided in all GP practices, and how well GP practices and hospitals are working together to provide joined-up care for patients. By studying this information in formats that identify conditions but not people, analysts can check that patients are receiving safe care in every NHS setting.

The “care.data Advisory Group” has been listening to the questions and concerns being raised by all stakeholders - patients, the public, health professionals, NHS staff and others - and advising NHS England and the Health and Care Information Centre about what should be the potential solutions or ideas for amendments to the care.data programme. Any proposed solutions that are agreed will need to be signed off by the Advisory Group before being implemented.

Building on previous discussions with a range of interested parties in Peterborough and London, Ciarán Devane is hosting a further discussion in Manchester on the 26 November.  This session will examine some of the proposed responses from NHS England to issues raised by staff, patients and members of the public. Building upon the findings of the first sessions, this meeting will move towards a more meaningful dialogue around solutions and will be used to shape the advisory group’s response and guidance on the future of care.data and the wider data sharing agenda.

The announcement of the care.data pathfinder areas means that care.data is now entering a critical testing phase. On behalf of the advisory group I would like to reassure you that no data will be shared until people have been fully informed and had an opportunity to make and informed choice.

More details about the care.data programme is available at www.nhs.uk/nhsengland/thenhs/records/healthrecords/pages/care-data.aspx.

Please note that due to the popularity of this event only one place is available per organisation.

Please note that this event is aimed at patient participation groups; GPs and GP practice managers; secondary care doctors; Healthwatch; voluntary and community groups; communication, access and advocacy groups; health charities; clinical commissioning groups; other NHS organisations; adult social services; children and young people’s groups; and detention organisations.

The event is NOT for members of the public. If you are a member of the public and would like to share your views, we recommend that you follow the link below. At the bottom of the webpage you will be able to leave your comments or to contact the NHS directly for a response. www.nhs.uk/NHSEngland/thenhs/records/healthrecords/Pages/overview.aspx