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

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. 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

7. accessing help and information • In future there will be just three key ways for patients and service users to access help and information at the national level across healthcare, public healthand care and support: • 999 as the telephone service for emergencies; • NHS 111 as the telephone service for health and care advice and services; • a comprehensive online ‘portal’ – bringing together the best of the relevant information and online services currently provided by the existing national web services”

8. a single set of authoritative information • Central Government or other national bodies will retain responsibility across some core areas where public accountability, clinical safety or simple pragmatic reasons, mean a single set of authoritative or trusted information is required nationally, for example: • public health emergencies & health protection • high quality evidence and guidance information to support high quality standards of care – such as that provided by NICE; • managing symptoms, common everyday conditions and treatment choices; • national public health campaigns and guidelines on health improvement – for instance Change4Life; • directories of services; • health and social care rights and entitlements • consistent core information on the safety and quality of services and providers

9. space to innovate • While Government should provide a core set of this information, it cannot try to provide everything to everyone. • Within specific areas, there are already organisations, often in the voluntary sector, which can provide better-targeted information. The Government will be clear about what will need to be provided centrally, giving others space to innovate. • Beyond this core information provided nationally by Government and creating the right environment to support the development of an information market, the state will not intervene in the information market unless it is necessary to prevent a significant negative impact on outcomes, equalities or efficiency

10. ensuring information quality • Responses to the Information Revolution consultation confirmed the view that we want to be reassured about the quality of content (written and visual information on health and care topics). • The national online portal will signpost organisations that provide more detailed, specialised information. The portal will not provide links to organisations that do not comply with requirements for accuracy and quality of information. The endorsement of a link from the national portal, and the volumes of our user visits that this will create, will provide a powerful incentive for maintaining standards. • During 2012/13, Government will continue to support ‘The Information Standard’ an independent voluntary scheme that accredits providers of information on treatments, conditions, symptoms and disability.

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. for real people: modern convenient information 2. Booking appointments will be quicker when you can do it online 3. You’ll need fewer phone calls when you can communicate with professional teams electronically 1. Accessing your GP record online will give you more control over your care 5. You’ll know where to go for health and care information when there is one trusted website 6. Services will do more to offer you support you use and understand information if and when you need it. 4. You’ll have less paperwork in your life when your healthcare letters are available online 9. You will have more information to help you choose the best services and treatments for you 8. You’ll be confident that your feedback is being listened to and helping to improve services 7. You won’t have to repeat yourself when your information is shared between health and care professionals