National data: building trust across health and social care

Dame Fiona Caldicott sets out her priorities as National Data Guardian and invites you to comment on what her role should cover.

I was asked by the Health Secretary, Jeremy Hunt, in November last year if I would take on a new role as the National Data Guardian for Health and Social Care. Today a consultation has been launched on the responsibilities that my role may include, and I would like to invite you to have your say.

My commitment

I would like to assure the public that I remain absolutely committed to working in their interests and exposing any wilful or ignorant abuse of information sharing or failure to safeguard precious health and care data.

I work independently of government, providing guidance and challenge to it on important data issues. They include:

• patient confidentiality
• information sharing
• avoiding abuse of public trust in how health and care data is used

Ultimately, my office is working with the Information Commissioner’s Office and the Care Quality Commission so that they are able to take action on any issue I uncover over which they have statutory authority.

I am committed to openness, honesty and public engagement, in what has become a highly complicated area of life. In the wake of revelations by the National Security Agency whistle-blower Edward Snowden, the public is less ready to trust either government or the private sector to manage data responsibly and in their interests. It is right and proper that today’s citizens want to ask questions and receive truthful answers. High levels of distrust have the potential to jeopardise medical care itself, but higher levels of knowledge and awareness are crucial if public trust is to be built and maintained. Anxiety felt by patients or social care service users about how their information is being handled should be responded to positively, and valued in any subsequent debate, rather than there being any attempts to silence it.

I have the support of an independent, experienced, multidisciplinary panel in this role, and a small team of efficient staff. We are currently hosted by the Health and Social Care Information Centre (HSCIC), and are completely independent of it.

My guiding principles

There are 3 main principles that I expect to follow as National Data Guardian:

First, there is a 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. Patients and service users expect this, and my interventions will focus on supporting and reinforcing this approach. The direct benefits such sharing can bring to people, by providing joined-up care, better diagnosis and treatment, are unquestionable.

Second, there must be no surprises to the citizen about how their health and care data is being used. This is a complex arena where the public benefits of access to big data, gathered from the millions of health and care activities occurring daily, need to be balanced with the public’s right to know and, if they wish, object. Failing to offer this choice to people can accelerate discontent with how they are being informed and consulted, resulting in a growing rejection of the benefits of data sharing.

Third, there is the over-arching issue of the need to build a dialogue with the public about how we all wish information to be used. Many interests need to have voices in the debate. They include:

• commercial companies providing drugs and services to the NHS
• researchers discovering new connections which will transform treatment
• those managing the services on which people rely, so that public money is used to maximum value

As the Nuffield Council for Bioethics made clear in a report published this year, ‘The collection, linking and use of data in biomedical research and health care: ethical issues’, there is an essential requirement to engage in such a dialogue, before embarking on major projects to gather and share data.

Setting up an honest discussion

Trust is fundamental and can only be secured through honest discussion. This involves owning up to failure and unsatisfactory solutions. Recent media coverage of HSCIC’s struggle to implement patient objections lodged more than a year ago, shows there are no quick solutions. Honest explanation for that failure is required if people are not to believe that they are again hearing promises that will not be fulfilled or evasiveness in the face of the facts. However, the HSCIC might think that it was given an unenviable task, since rapid implementation of this right was never a realistic possibility.

There can be no assumptions made about today’s citizens. They have a right to know, and object about how their data is used, if they wish. Their understanding and choices must be actively engaged with. Then we can use information for its enormous, potential benefits. Without that trust and openness, people will tend to believe the worst of motives.

From:
Department of Health