1. 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 Dame Fiona Caldicott National Data Guardian for Health and Care

2. 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

3. 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

4. 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

5. 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

6. 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.

7. 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

8. 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.

9. 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.

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

11. 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”

12. 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

13. An ongoing conversation

14. 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

15. More information and contact
@NDGoffice