Transcript Insert title here - Department of Health

Information: to share or not to share?
BCS HC 2012 Conference
London 2nd May
Dame Fiona Caldicott
Information: to share or not to
share?
• Invitation to lead a review of information governance from
the Secretary of State, following a recommendation by the
Future Forum
• Future Forum Information Report & recommendations
• Information: to share or not to share? Review
• How you can contribute to the review
NHS Future Forum recommendation
The Government should commission a review of the current
information governance rules
. . . to ensure that there is an appropriate balance between
the protection of patient information and the use and
sharing of information to improve patient care”
NHS Future Forum, January 2012
NHS Future Forum recommendation
The NHS must move towards using its IT systems to share
data about individual patients and service users
electronically – in the interests of high quality care”
NHS Future Forum, January 2012
‘A very strong and clear message that not sharing information has the potential
to do more harm than sharing it. It is also a major annoyance for patients who
feel that they should not constantly have to repeat the same information about
themselves as they pass through the treatment pathway’
NHS Future Forum - Principles
• Responsible data sharing underpins quality of care
• IG is a balance between facilitating use and protecting
• Data is the patient’s - need to treat their data with respect as part of
respecting them
• Normal presumption that all those involved in care have access with
consent
• An implicit deal between the service and users and a responsibility to
inform on use as well as keep confidential – a key issue is that with the
advent of electronic records – and a changing model of care provision –
we need to renegotiate the social contract between the public and
services
IG Review Panel
• Panel – 15 members
• Process of selection – key areas were identified and then
relevant organisations were approached for suggestions
• Members appointed in their own right not as
representatives
• Monthly meetings
• Additional evidence gathering sessions
IG Review Process
• Timetable – intention to feed into NHS Constitution
consultation for October
• Interim report and then final report
Dec 2012 / Jan 2013
• Secretariat – currently 3 staff
• Steering group – 3 & staff
IG Review Draft Scope
• Still to be agreed
• Key issue to address concerns Consent and ensuring that
all activities have a secure basis in law.
• IG in the new landscape – how to have effective internal
and system wide IG
• Specific cross-sector IG issues affecting individuals and
organisations
Consent and lawful processing
• when is explicit consent needed?
• what is needed for valid implied consent?
• are there activities that need a secure legal basis but for
which consent is not appropriate or feasible?
• how should they be supported in law?
• the consent process – how to seek consent and
what to record
• implementation through technical architecture
IG in the new landscape
Health & Social care Act 2012 changes
• IG roles and responsibilities of organisations
– Monitoring and reporting: CQC
– Managing and advising on IG:
Information Centre (IC), NHS Commissioning Board,
Department of Health
• Responsibility for:
– Public health data flows - Public Health England (DH) & LAs
– Commissioning data flows: NHS CB
– Adult Social Care data flows: DH, LAs, DWP
– Central data collection & Honest Broker services - IC
Moving forward: IG levers
• Contract Terms with providers and the oversight
management and enforcement of contractual provisions
• Information Standards to the extent they are applicable to
information governance but they have the benefit of being
health and social care system wide
• CQC registration criteria – currently limited scope in
relation to enforcement - future role for NIGC?
• Legal enforcement through the Information
Commissioner’s Office in relation to the Data Protection Act
1998
Evidence gathering themes
• Direct care, incl sharing
across H & SC and with
independent sector
• Commissioning
• Public Health
• LA / Adult, Children and
Family Social care uses
including safeguarding
• Research
• Consent
• Linkage and identifiability
• Patient and Public rights in
law – EU Regulation and
what services need to tell
people
• Workforce education,
training and regulation
• Issues related to genetic
and genome information
• Issues related to new and
emerging technologies
Next steps
• Careful thought to working out the practicalities of change
• Collaboration & partnership
• Future approach to IG needs to promote excellence in
health and social care
• Consistency of approach across health and social care,
research and public health
How you can be involved
Happy to receive written submissions by email (or post)
Website in development:
www.Caldicott2.dh.gov.uk – not yet live
Contact: [email protected]
Office - 020 7972 3734