Joanna Huxton, National Liaison Manager
Centre of Excellence for Information Sharing
You never know, when attending meetings for the Centre, who you might meet and where! At a recent meeting on the devolution deal in Manchester, some of us met Dame Fiona Caldicott in a lift!
Dame Caldicott was keen to know more about us and the work we are doing across health and social care integration. During November, the Centre will be sharing examples of work that is happening locally and nationally on a range of innovative projects to support better information sharing to help services integrate and improve patient outcomes. This work highlights not only systems that have been developed but the need to develop trust, relationships and confidence to support on-going information sharing. As Dame Fiona Caldicott said: “trust is fundamental and can only be secured through honest discussion.”
In November 2014, Dame Fiona Caldicott was appointed as Britain’s first National Data Guardian for health and social care to act as ‘the patient’s’ champion on security of personal medical information. This role was created to ensure that personal, confidential data is held and used to support better outcomes for health and social care services, at the same time as providing confidence that there are thorough safeguards in place to protect personal confidential data. The National Data Guardian works independently of government, providing guidance and challenge to it on important data issues. The National Data Guardian will provide a strong and independent voice, established in law, to speak up for people whose data is needed and to challenge those using it.
If the National Data Guardian is concerned by how an organisation is sharing data she can refer concerns directly to the Information Commissioner’s Office (ICO) and the Care Quality Commission (CQC) to investigate and sanction where necessary.
Recently the Government launched a consultation to seek views on the National Data Guardian for Health and Social Care. This is the starting point for identifying the key principles that should define the role and functions of the National Data Guardian in going forward. Responses to the consultation will support the Government to develop more detailed proposals on the role and functions and the Government will consult further on the detail of any legislation to establish the National Data Guardian for Health and Social Care on a statutory footing.
The consultation endorses the Government’s recognition of the central role data and information plays within the health and social care system and the importance of integrating services around the needs of individuals and communities. It also reinforces the need to make sure the right information is captured to be able to forward plan health and care services, and that to do so requires robust systems to capture, hold and manage information and build people’s trust.
Dame Fiona Caldicott has set out three guiding principles she expects to follow as National Data Guardian:-
- Supporting and reinforcing responsibility on clinicians and other members of the care team to share information that directly affects the care of the person they are treating or supporting.
- Ensuring there are no surprises to the citizen about how their health and care data is being used, allowing public benefit to be balanced with the public’s right to know and, if they wish, object.
- Building a dialogue with the public about how we all wish information to be used, recognising that many interests need to have voices in the debate, including commercial companies, researchers, and service managers.
Patients and service users trust and expect information to be shared by the medical and caring service providers looking after their needs and can often feel surprised to find out this isn’t simply ‘just happening’.
The National Guardian will ensure people receive joined-up care, better diagnosis and treatment.
But this is not just about how data is shared. As Jeremy Hunt points out in the introduction to the consultation, this is about everyone taking responsibility – professionals, managers, politicians, voluntary organisations. Everyone has a part to play.
And key to this is how relationships are strengthened when joining up services to be fully integrated. How confidence and trust develop between local partners so information is shared, when appropriate and right to do so, to provide patients with the best possible care, to improve services and achieve greater benefits for the whole country.