IGA Conference Tuesday 22 November 2016 Building public trust in the use of health and care data Dame Fiona Caldicott National Data Guardian for Health and Care IGA Conference Tuesday 22 November 2016 Building public trust in the use of health and care data EHI Live Tuesday 1 November 2016 Dame Fiona Caldicott National Data Guardian for Health and Care

National Data Guardian for Health and Care (NDG) Independent and authoritative champion for the public Advises and challenges the health and care system So the public can trust that their information is held securely and used properly to provide and improve care

Supporting the National Data Guardian An independent panel appointed by the NDG to advise and support meets six times a year Expertise from a number of fields, including Primary and secondary health care Social care Informatics Law, ethics, health policy Commissioning Communications Small team of office staff in addition

Placing the NDG role on a statutory basis Jo Churchill presented the bill for a first reading on Tuesday Nov 1 MPs from all parties were among those seconding the Bill We expect the second reading in December This is a presentation bill – a private members’ bill. But with support from the Government, which has committed time to this. We hope this will therefore have a reasonable chance of success for a private members’ bill Jo Churchill MP presenting the National Data Guardian for Health and Care Bill in November

The NDG review of Data Security, Consent and Opt-outs Secretary of State for Health commissioned in Sept 2015 Care Quality Commission (CQC) reviewed current approaches to data security in NHS The National Data Guardian asked to propose a set of data security standards applicable across the NHS and social care system a method to assess compliance with CQC new model of consent /opt outs Published July 2016 with strong common themes across NDG and CQC findings At the last IGA conference in March, we were waiting to publish the Review which had been commissioned by SoS in Sept 2015 We published this in July

A relationship of trust The centrality of trust The review underlines the central importance of trust. The ability of the patient or service user to talk candidly to their health or care professional to trust that information they share will be treated with respect is as vital now as it always has been. So as we develop new technologies and find new ways of using information to gain insight into how to improve care, the relationship of trust between an individual and the clinicians or professionals caring for them remains critically and centrally important to the effective functioning of the system, just as it has done for many years. Individual citizens also need to be able to trust the system as a whole to keep their data secure. We heard that they largely do trust the NHS, although levels of trust in the social care system were lower. I make no apology for trust being the key theme in my work as National Data Guardian.

Altruism and scepticism Little knowledge among general public about how data is used Benefits may be clear to experts – but not yet to public Our evidence shows that most people want to support their data being used to improve care… …but transparency, security, and red lines matter …and people expect a choice Spectrum of opinion

Recommendations: NDG Data Security Standards Ten new standards, grouped under three leadership obligations – people, processes, technology: Leadership Obligation 1: People: Ensure staff are equipped to handle information respectfully and safely, according to the Caldicott Principles. Leadership Obligation 2: Process: Ensure the organisation proactively prevents data security breaches and responds appropriately to incidents or near misses. Leadership Obligation 3: Technology: Ensure technology is secure and up-to-date. The key recommendation I have pulled out is about leadership. I know that’s an important theme of the conference today and I will return to it in a few minutes.

Recommendations: opt-out for purposes beyond direct care 1. You are protected by the law. 2. Information is essential for high quality care. 3. Information is essential for other beneficial purposes. 4. You have the right to opt out of your personal confidential information being used for these other purposes beyond your direct care: A. Personal confidential information being used to provide local services and in running the NHS and social care system. B. Personal confidential information being used to support research and improve treatment and care. 5. This opt-out will be respected by all organisations that use health and social care information. 6. Explicit consent will continue to be possible. 7. The opt-out will not apply to anonymised information. 8. Arrangements will continue to cover exceptional circumstances.

Uses of information beyond direct care Running the NHS and care system Research

The NDG review : a role for leadership Data security “A strong SIRO, an engaged board and an effective Caldicott Guardian are essential success”. The board as a whole should take responsibility Importance of leadership led us to group the ten data security standards clustered under three leadership obligations Consent and opt-out “All health and social care, research and public organisations share responsibility for making the case for data sharing to the public”

What next? Recommendations accepted in principle by UK Government – it is considering consultation responses Nothing changes yet and implementation will not be overnight NDG also looking at other topics, for example genetics

An ongoing conversation

Thanks Katie Farrington and her independent review team The National Data Guardian Panel The National Data Guardian Office team And many more including… Academy of Medical Royal Colleges Association of Directors of Adult Social Services Association of Medical Research Charities Asthma UK British Medical Association British Heart Foundation Cabinet Office Cancer Research UK Care Quality Commission Centre of Excellence in Information Sharing Chief Medical Officer Department of Health Health and Social Care Information Centre Health Research Authority Information Commissioner’s Office Information Governance Alliance Local Government Association Local Government UK Macmillan Cancer Support Medical Research Council National Voices NHS England NHS Improvement Nuffield Council on Bioethics Public Health England Richmond Group Royal College of General Practitioners Royal College of Nursing Royal College of Physicians of London Royal College of Psychiatrists Royal Statistical Society Skills For Care Society of Local Authority Chief Executives and Senior Managers The Patients Association UK Council of Caldicott Guardians Wellcome Trust

More information and contact www.gov.uk/government/organisations/national-data-guardian ndgoffice@nhs.net @NDGoffice