hisi conference 2016 - dame fiona caldicott - nov 16th 2016
TRANSCRIPT
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
Building public trust in the use of health and care data
Dame Fiona Caldicott
National Data Guardian for Health and Care
HISI Annual Conference
Wednesday 16 November 2016
National
Data
Guardian
National Data Guardian for Health and Care (NDG) in England
So the public can trust that
their information is held
securely and used properly to
provide and improve care
Independent
and
authoritative
champion for
the public
Advises and
challenges the
health and care
system
National
Data
Guardian
A relationship of trustThe centrality of trust
National
Data
Guardian
Previous reviews
1997: Caldicott Report reviewed used of patient
identifiable data
o Recommended six principles to protect
confidentiality, known as ‘Caldicott principles’
o Led to creation of Caldicott Guardians in NHS
and social care organisations to ensure patient
confidentiality safeguarded
2013: Information Governance Review
o New Caldicott principle: duty to share
information can be as important as the duty to
protect confidentiality
o Called for culture change – everyone in system
should see information governance as part of
their responsibility
National
Data
Guardian
The NDG review of Data Security, Consent and Opt-outs
o Secretary of State for Health commissioned in
Sept 2015
o Care Quality Commission (CQC) reviewed
current approaches to data security in 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 Published July 2016 with strong common
themes across NDG and CQC findings
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
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.
National
Data
Guardian
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.
National
Data
Guardian
Uses of information beyond direct care
ResearchRunning the NHS
and care system
National
Data
Guardian
Recommendations: six-word executive summary
It’s all about trust.
No surprises.
National
Data
Guardian
What next?
o Recommendations accepted in principle by UK Government – it
is considering consultation responses
o Nothing changes yet and implementation will not be overnight
o NDG also looking at other topics, for example direct care and
genetics
National
Data
Guardian
An ongoing conversation
National
Data
Guardian
More information and contact
www.gov.uk/government/organisations/national-data-guardian
@NDGoffice