Developing the Information Strategy The King’s Fund Information Revolution Conference 12 October 2011 Giles Wilmore, Director of Quality Framework and QIPP

• We are currently developing a new information strategy covering the

NHS, social care and public health.

• This will be informed by the consultation on Liberating the NHS: An Information Revolution and by the work of the Future Forum group co-chaired by Jeremy Taylor and Professor David Haslam, reporting later this year.

• Vast possibilities – but also daunting barriers.

• Whilst the direction of travel is broadly clear, there remain significant complex issues to resolve and real questions about how best to make it happen.

• Today is a fantastic opportunity to share our thinking to date and work through some of the thorny issues with you.

Introduction

• Equity and excellence: Liberating the NHS – putting patients at the heart of everything, to make a reality of ‘no

decision about me without me’ – achieving outcomes that are among the best in the world – empowering clinicians to deliver results

• Liberating the NHS: An Information Revolution

– people have the information they need to stay healthy, to take decisions about and exercise more control of their care, and to make the right choices for themselves and their families;

– people are able to see an accurate record of their care, which is available to them electronically, and use it as a basis for interacting with their care providers;

– information is liberated from a closed, bureaucratic system in order to serve patients and the public, and to help drive better care, improving outcomes, fostering innovation and facilitating the better use of resources.

The vision

This demands a significant culture shift

• to patients and service users being active participants in their care

• to information which is based on the patient or service user consultation and on good clinical and professional practice

• to a focus on meeting the needs of individuals and local communities

• to a culture characterised by openness, transparency and comparability

• to a range of organisations being able to offer service information to a variety of audiences

• to an approach in relation to digital technologies, where we connect and join up systems.

Key themes from the consultation

• Ensuring that the information revolution benefits everyone • Information for improved outcomes including service user feedback • The need for information to be linked across health, social care and also

public health • Information for professionals • People’s control of and access to information held in their own care

records with clear governance and consent models • The need for clear routes (or channels) to information including clear

online signposting • Information to support choice, to help people live healthier lives and to

help patients to care for themselves • Information for autonomy, accountability and democratic legitimacy,

including proposals for information ‘intermediaries’ and how information drives research

• The need for clear information standards across health, public health and social care.

Current progress

• A substantial programme of work is underway to address these themes and to shape specific policy options for ministers to consider.

• The broad direction of travel is clear, but there are a series of areas where we need to test the practicalities of implementation and consider what pace and scale of progress is achievable.

• There are six key areas where we hope to get your input throughout today and beyond:

1. information for shared decision-making and choice

2. patient control of records

3. recording data accurately at the point of care

4. sharing data effectively and securely

5. transparency and the information market place

6. channel shift.

1: Information and support for shared decision-making and choice

• Do we know enough about the types of information people need and want for different types of choice, and how they want to access it?

• How do we ensure the information available is kept up to date and responds to trends in the choices people want to make?

• How can we tackle information inequalities and avoid some communities being disempowered by difficulties accessing and using information effectively?

• What should our digital channel strategy be?

• Should we simplify the ‘front doors’ to the NHS?

• What information should remain the responsibility of the centre to provide?

2. Patient control of records

• How are professionals, GPs initially, encouraged, incentivised or required to offer this service to their patients?

• Should we take a phased approach, initially focused on, eg, long-term conditions?

• How do we encourage people to trust and use radically different ways of accessing services?

• Who will build and supply the systems to deliver electronic access to the record and associated functionality?

• How will this be funded and do we know that commensurate efficiency savings can be made?

3. Recording data accurately at the point of care

• How do we shift ingrained working practices and cultural

barriers to make this vision possible?

• How can we support organisations to ensure that the right information and IT systems and capability are in place and supported locally to capture information in this way?

• How can we effectively police the use of a single set of informatics standards and consistent data coding?

• How can we reassure the public that their personal data will be held securely and confidentially, and that only anonymised information will be used for secondary purposes?

4. Sharing data effectively and securely

• What kind of consent system will we need for sharing personal

data with other professionals (eg, GPs sharing their patients’ records with social workers)?

• How can we reassure the public we will avoid errors of identity and lapses in data security as we move their information more freely round the system?

• How do we ensure that locally procured or upgraded systems can connect with each other effectively and securely?

• In a resource-constrained environment, how can we demonstrate the longer-term cost effectiveness of health and care organisations making such investments?

5. Transparency and the information market place • What, if anything, do we need to do to stimulate a market of

information intermediaries?

• What kind of differential approaches are needed for different types of intermediaries – eg, voluntary organisations, research organisations, organisations providing analytical and interpretive services to the NHS?

• What role should the state play as an information intermediary?

• What will be the role of local authorities in relation to social care and public health information?

• How can the public be assured that information about public services is reliable and trustworthy?

• Who is responsible for ensuring information is accredited or kite marked, or will the information marketplace self-regulate?

6. Channel shift

• How can we best facilitate and support the use of digital and new technology to deliver more responsive care and better value for money?

• Where are the greatest benefits?

• What are the key barriers to overcome?

• How do we most effectively learn from and build on current innovations and best practice?

Next steps

• We expect the NHS Future Forum to produce a further report around December.

• They are focusing especially on how to overcome the cultural and practical challenges that have limited progress in the past.

• Aiming for Information Strategy publication this winter, informed by the Future Forum work and by discussions including this conference.

• The NHS Commissioning Board will be working with stakeholders to develop a more detailed implementation plan for the NHS elements of the strategy after it has been published.