Presentation heading

Report
care.data: listening to
you
Andrew Chronias
Regional Head of Intelligence
NHS England (South)
What is Care.data?
• Care.data aims to ensure joined-up data is made
available to clinicians, commissioners,
researchers, charities and patients to improve the
quality, safety and effectiveness of health care
• Hospital information has been collected for over
20 years
• Most care is delivered outside of hospitals - these
are currently gaps in our data
• Collecting and linking missing data, such as from
GPs, will help deliver better health services
The benefits of care.data
• The data could be used to help NHS services
deliver early diagnosis of cancer improving how
patients respond to treatment
• Chronic obstructive pulmonary disease – linked GP
data has improved diagnosis and prescribing in
London
• Vioxx effective anti-arthritis drug increased risks of
heart attack. It took years to find the association but
linked data will make the connections more quickly.
Actions
Care Act 2014
• The HSCIC will be restricted in sharing this data for only health and
social care purposes and to promote health in England
• Release of data approved by the Confidentiality Advisory Group an
expert advisory group on release of data for medical purpose
appointed by the Health Research Authority (HRA)
• Those who misuse data will not be allowed to receive further data (a
one strike and you are out policy)
Care.data Advisory Group
Used to advise, guide and test the care.data programme
Chaired by Ciaran Devane Chief Executive of Macmillan Cancer and
NHS England Non Executive Director
Membership includes; RCGP, BMA, Healthwatch, some privacy groups,
charities and key individuals
Other Progress
• Phased approach (100 to 500 GP Practices) to
trial, test, evaluate and refine the process
• There will be no artificial deadline to proceed, roll
out nationally only when we are sure the process
is right
• Independent Information Governance Oversight
Panel (IIGOP) chaired by Dame Fiona Caldicott
will advise on the evaluation and whether success
criteria have been met
• Proposal for a data lab to give controlled access to
data with only aggregate anonymised data taken
out of the lab
• Opt out to have a legal basis through directions to
the HSCIC
Issues already identified
• Sale of data
• Data passed to insurance companies
• Individuals can be identified?
• Security?
• How do I opt out?
• How can you reduce the burden on GPs?
• Why should I share my data?
ANY OTHER CONCERNS?
Thanks……..for your time
To find out more or have your say……
• Patient information line: 0300 456 3531
• E-mail: [email protected]

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