Healthcare data Robin Burgess, Regional Head of Intelligence, London region robin.burgess@nhs.net 17/9/2014

Primary and secondary use data Demographic data Patient data Data about their demographics, their lives Core NHS Process data Data about what happens to them – tests, prescriptions, diagnosis, procedures – in each setting of care – GP, community, hospital Secondary Use Data Data about patients that supports management, commissioning, quality improvement, review – need not be able to identify the patient

Sharing of data: the Law Data about patients that clearly identifies them as individuals can be shared between people in the NHS directly involved in delivery of care to that patient, without the need for explicit patient consent – implied consent is assumed This/These data can’t be shared with people in the NHS (or beyond) not involved in their direct care, for any secondary uses, without the patient’s consent or another legal basis Anonymised data can be shared

Where and how data is processed The local provider collects and manages identifiable data for its own use – e.g a GP, a hospital; some of this is supplied to the national data warehouse – the Health and Social Care Information Centre (HSCIC) as part of national standard data sets Commissioners, academics, public health etc do not have access to identifiable data without a legal basis. They have to have such data made legal to view, via a data intermediary – mostly the national HSCIC or its local branches in CSUs, or use anonymised data. A CSU or Commissioning Support Unit processes data within a smaller area as a branch of the HSCIC or processes local data in less identifiable form or with consent Other data experts work on analyses of specific data sets where legally able to do so (sometimes as ‘Accredited Safe Havens’) and this data may be collected solely for that separate use or may come from the CSU/HSCIC from routine NHS data.

Various types of secondary uses Planning/commissioning services Knowing the health of the population (registries, incidence) Paying for services provided Research into aspects of healthcare problems and treatments Reviewing and improving the quality of services provided – including by individual clinicians/teams (e.g. as part of cycles of service improvement like clinical audit)

Issues with NHS data Quality issues: Data can be incorrectly entered into the system/data can be recorded to varying standards and definitions Different providers can’t usually access each other’s data about the same patients Secondary users can’t see identifiable data without legal basis Secondary data to plan/review/improve data is patchy in quality Patients can’t really access much of the data about them

Solutions NHS England is working on…… Ability for different providers to share data for direct care Ability for patient to access data about themselves Standards for how data is recorded Legal solutions to blocks in the flow of data to secondary users A new data system to collect and analyse a greater part of the primary data to support secondary uses (care.data) Greater availability of data to the public

NHS data and the 3rd sector If a 3rd sector body is involved in direct care they can be given identifiable data about patients they serve NHS data is put alongside data from 3rd sector and LAs as part of joint strategic needs assessment/ for public health use Various types of secondary data processes (research etc) draws on data from 3rd sector bodies Through care.data, 3rd sector bodies will be able to access processed data for their needs – campaigning, profiling, allocating resources

Care.data is …. …branded as ‘Better information means better care’ Intends to be a set of linked data from all NHS and social care settings to enable better commissioning, research, public health, clinical audit and performance and system management – Will extract a much larger set of data from primary data collected to use for secondary purposes Being piloted and tested at present to fix problems/concerns highlighted when first launched

Health and Social Care Information Centre NHS Publication Identifiable data Potentially identifiable data Aggregate data NHS provider Health and Social Care Information Centre NHS Public Health England etc. NHS Commissioners& Providers, Health Service Researchers & analysts – and charities S251, communicable disease outbreak, etc. Patient