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: