Dame Fiona Caldicott, National Data Guardian for Health and Care Expo 2016, Day Two, FutureNHS Stage

1. Building public trust in the use of health and care data
NHS Expo
Thursday 8 September 2016
Dame Fiona Caldicott
National Data Guardian for Health and Care

2. National
Data
Guardian
The National Data Guardian for Health and Care (NDG)
Government has committed to putting into law a role that:
o is an independent and authoritative champion for the public
o considers the uses made of data health and care data
o has formal advice giving powers
o does not issue or enforce sanctions but works with existing
regulators

3. National
Data
Guardian
The NDG review of Data Security, Consent and Opt-outs
o Secretary of State commissioned in September 2015
o Care Quality Commission (CQC) reviewed current approaches to
data security across the NHS
o 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
o Strong common themes across NDG and CQC findings

4. National
Data
Guardian
A strong evidence base
Proposals developed iteratively with input from wide range of
stakeholders, including:
o Patients and service user groups
o Clinicians, Royal Colleges, British Medical Association
o Information Commissioner's Office
o Service providers
o Commissioners
o NHS Digital
o Research community
o Civil society
o Providers of IT systems
o Data security experts
o UK Caldicott Guardian Council

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

6. National
Data
Guardian
Recommendations: NDG Data Security Standards
Ten new standards, grouped under three themes – people,
processes, technology
Key data security recommendation:
The leadership of every organisation should
demonstrate clear ownership and responsibility
for data security, just as it does for clinical and
financial management and accountability.

7. National
Data
Guardian
Recommendations: opt-out
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.

8. National
Data
Guardian
Recommendations: six-word executive summary
It’s all about trust.
No surprises.

9. National
Data
Guardian
What next?
o Recommendations accepted in principle by Government
o Department of Health written consultation ended yesterday.
Some additional testing and engagement continues.
o Nothing changes yet
o Ongoing conversation with the public needed
o Implementation will not be overnight
o NDG also looking at other topics, for example sharing
of genetic data to support patient care

10. National
Data
Guardian
Thanks
Katie Farrington and her independent review team
The National Data Guardian Panel
The National Data Guardian Office team
And many more including…
38 degrees
Alzheimer’s Research
Academy of Medical Royal Colleges
Association of Directors of Adult Social Services
Association of Medical Research Charities
Asthma UK
British Heart Foundation
British Medical Association
Cabinet Office
Cancer Research UK
Care Quality Commission
Centre of Excellence in Information Sharing
Chief Medical Officer
Department of Health
Equality and Human Rights Commission
Health Research Authority
Healthwatch
Information Commissioner’s Office
Information Governance Alliance
Liberty
Local Government Association
Local Government UK
Macmillan Cancer Support
MedConfidential
Medical Research Council
Medicines and Healthcare Products Regulatory Agency
Mind
MQ: Transforming Mental Health
National Voices
NHS Digital
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
Tech UK
UK Council of Caldicott Guardians
Wellcome Trust

11. National
Data
Guardian
More information and contact
www.gov.uk/government/organisations/national-data-guardian
ndgoffice@nhs.net