Putting all of us in control of the health and care information we need

1. The power of information Putting all of us in control of the health and care information we need Dr Susan Hamer National Director of Nursing, Midwifery and AHPs Department of Health Informatics Directorate

2. the vision: people first • Joined up systems and shared data standards will facilitate and drive integration within and between organisations and care settings to ensure that care is focused around the person and their health and care needs. This is why the strategyspans the NHS, public health and social care. • Getting the right information to the right people at the right time – in a form they can understand, engage with and contribute to – will help individuals take control of their own care, improving self-management, shared decision making, and more informed choices. • Needs support and advocacy to help people in all sectors of society to make meaningful use of it, harnessing modern technology where that is helpful. 2

3. the vision: care records - a core source of data

4. the information strategy: main ambitions • Information used to drive integrated care across the entire health and social care sector • Information regarded as a health and care service in its own right – with appropriate support in using information available for those who need it, so that information benefits everyone and helps reduce inequalities • A change in culture and mindset, in which our health and care professionals, organisations and systems recognise that information in our own care records is fundamentally about us - so it becomes normal for us to access our own records • Information recorded once, at our first contact with professional staff, and shared securely between those providing our care – supported by consistent use of information standards that enable data to flow between systems whilst keeping our confidential information safe and secure

5. the information strategy: main ambitions • Our electronic care records become the source for core informationused to improve our care, improve services and to inform research, etc. – reducing bureaucratic data collections and enabling us to measure quality • A culture of transparency where access to high-quality, evidence-based information about services and the quality of care held by Government and health and care services is openly and easily available to us all • An information-led culturewhere all health and care professionals take responsibility for recording, sharing and using information to improve care • The widespread use of modern technology to make health and care services more convenient, accessible and efficient • An information system built on innovative and integrated solutions and local decision-making, within a framework of national standards that ensure information can move freely, safely, and securely around the system

6. key themes: records access • In the long term, the vision is for all health and care records to be securely accessible online • Early priority is GP records – technologically already possible for most practices. Everyone will be able to access their GP record online by 2015 • Support to access and use information is a vital part of care, and commissioners should ensure information benefits everyone and does not increase health inequalities 6

7. key themes: integration • First steps: • GP letters and hospital discharge letters to be available electronically • Clinical portals and other mechanisms to support clinicians to access relevant records easily • We need to re-balance the approach to information governance to encourage greater sharing of information to improve care. An independent review will look at this in more detail • Longer term: • Information to be shared securely across care pathways, using the NHS number in all settings • Information from care records aggregated and anonymised to support research, service improvement and commissioning 7

8. key themes: transparency • Transparency will be the norm, with clear commitments for the datasets that will be made available from the Information Centre • There will be clear routes to information through: • 999 for emergencies • 111 for urgent care • A comprehensive online ‘portal’ for everything else – both information government provides and a link to trusted information from others • Greater use of feedback and clinical benchmarking 8

9. key themes: culture • Many of the changes needed to meet our vision are cultural, and there are several aspects of the strategy influencing culture: • An emphasis on training for all professionals • A stronger professional identity for informatics professionals • Considering a Chief Clinical Information Officer role in providers • The Information Governance review will understand and influence the culture in our services around sharing information 9

10. the vision: how we’ll get there The strategy includes a number of central and local level actions - all require partnership working • Centrally • A standards ‘route map’ will be developed • A comprehensive online ‘portal’ will bring together the best of the relevant information on health, public health, care and support • All nationally held clinical datasets will be published by 2014, but not at a level which allows identification of patients • Central bodies (the CQC, Monitor, the NHS CB) will consider how they can incentivise the vision in this strategy • An independent review of information governance will be led by Dame Fiona Caldicott • Locally • Organisations will seek and respond to patient and service user feedback • Procurement decisions will be made in line with the information standards roadmap • Support for interpreting information will be provided to those who need it • Electronic transactions will be made available to patients • There will be better use of pharmaceuticals • The informatics profession will be developed • Online professional access to records will allow the sharing of records • Patients will, in time, have access to records beyond general practice

11. the strategy online: aimed at real people • online version includes sections on “what the strategy means for me” using a wide range of case studies • easy-read developed in partnership with CHANGE, a learning disability organisation • equality impact assessment co-produced by the Department of Health with 13 other organisations • extensive partnership working with Intellect, Royal College of GPs and many others www.informationstrategy.dh.gov.uk

12. Susan Hamer National Director of Nursing, Midwifery and AHPs Department of Health Informatics Directorate susanhamer@nhs.net