The Information Centre for health and social care

1. The Information Centre for health and social care Building health information services – Challenges for open data IASSIST 17 May 2007

2. The Information Centre: history & background • Established as a new NHS agency on 1 April 2005 • Arms length body • That has taken on • information-management functions from NHS • statistical functions from Dept Health • new functions relating to social care • Independent Board • Now all Leeds based with small liaison office in London

3. Arms length bodyAutonomy re what is collected, how it is collected, who has access, when and howBuilding trust in data and interpretationEnsuring relevance whilst maintaining independencePart of decentralised statistical system

4. Information Centre Strategy • Our vision:Information at the heart of decision making throughout Health and Social Care based on • authoritative comparative data • an independent perspective

5. We promote the use of the data for • Understanding the current situation • Developing policies and underpinning options appraisals • Implementing new policies • Informing decisions • Managing the system • Judging successes and failures • Improving the system

6. Pro-active information broker • Understanding and anticipating the nature of decisions across all levels of the health and social care system • Translating these into comparative information needs • Mapping current availability and quality of information • Working in partnership with others to reduce duplication and fill the gaps • Ensuring that data are properly managed, supported, shared and made more accessible in a timely way • Setting and promoting standards in data collection and use • Strengthening capacity for informed decision making especially through the use of comparative information and associated products

7. The Information Centre

8. The Information Centre – we are part of the national Statistical services

9. Policy driversPayment by resultsCommissioning of servicesPerformance managementPatient/public choice

10. Who is the information for? Commissioners and suppliers Patients and service users Providers of health and social care The public Researchers Managers and regulators Policy makers

11. Moves away from centralisation – to local autonomyRole of a national organisation(abide by principle of subsidiarity) • Collect and provide the national data (England) • Develop comparative indicators • Establish standards (classifications and methodology) • Advocacy for data • Forum for sharing good practice • Act as honest broker (eg for data integration) • Purchase/ develop common tools • Participate in cross-governmental or UK, European or international initiatives

12. Changing the culture Can’t do this externally until you have internal coherence and acceptance of a set of values so …. • We strive for relevance and responsiveness to our customers • We value integrity • We promote partnership and teamwork • We focus on results • We are innovative and progressive

13. We strive for relevance and responsiveness to our customers We provide informative metadata and constructive advice to allow users to make informed judgements about the data. We provide information which meets the needs of our customers and stakeholders, and are ‘fit for purpose’. We champion effective access to information by all users. We communicate in a straightforward, timely and relevant way. We understand relevant policy and organisational contexts and their information implications.

14. We value integrity (both in our information and in our behaviour) • Internally We are fair, honest and caring of staff and colleagues. • Externally We are fair, honest, impartial, and independent.

15. We value integrity (both in our information and in our behaviour) • We provide information of high quality, integrity and robustness which can be relied on. We are confident about our findings and prepared to account for them. Tension : Confident vs provocative

16. We value integrity(of both our information and our behaviour) • We value the importance of information and of using it appropriately. Thus we ensure appropriate governance and stewardship of information at all times. And we provide leadership and support for service providers and other users of information.

17. We value integrity (both in our information and in our behaviour) • We are honest brokers. We appreciate the tensions between different players in health and social care (especially between the national and the local, and between the user and the producer). A key role at this interface is to ensure that any arguments do not need to focus on the data.

18. We promote partnership and teamwork • Internally- we work productively and positively across departments and functions to produce the most effective and efficient results for our customers. We value the different skills of our staff and seek ways to maximise their contribution to the organisation. • Externally - we seek to accomplish our mission in fair and mutually respectful partnership with staff, industry, regulatory bodies, governments and health and social care professional communities; locally, nationally and internationally.

19. We focus on results We are efficient –and caring about the public purse We measure key performance indicators We are a customer-centric organisation We sometimes say NO We learn from failures We are accountable for outcomes

20. We are innovative and progressive • We deliver to the highest professional standards and are recognised for our knowledge and expertise • We are a dynamic and lively organisation with an entrepreneurial and innovative approach to the development and provision of services • We do not tolerate blame and bullying • We are confident enough to own up to and address weaknesses • We value the diversity of staff and colleagues and provide opportunities to develop and grow for the benefit of our organisation and our staff as individuals.

21. Principles underpinning our work Collect data once only, use them many times • be temperate in data requests – no data collection for the sake of it • share data across agencies • identify key data needs and reduce response burden • promote access to data within appropriate frameworks • develop data policies • permit deliberate replication, avoid ignorant duplication • ensure that the value of the data is commensurate with the resources used to collect it • deliver the data back to the providers

22. Reducing the burden • Working with partners to: • maximise streamlining and sharing of information and data collections • assure data collections are necessary and add value • eliminate collections where there is duplication or burden outweighs value. • Includes regulatory bodies • Developing authoritative assurance and approval process

23. Information rather than statistics • statistics are a by-product of administrative data • longitudinal, individual level, integrated • rich data sources (National patient care record, electronic staff record) • building secondary users services • consistent with reducing the burden • tradition established for providing access to survey data but not for admin data

24. Barriers to accessNo tradition or cultureAmbiguities over data ownershipClinical approach (role based access model) Difficulties of ensuring confidentialityExtreme sensitivity of some of the dataConcern about mis-use deliberate and accidental (complexity, political issues etc)Concern about data qualityFragile support for these systemsBroader societal issues How to manage opting out

25. Two different approaches:Build the systems first, establish their use for delivery of patient care, then think about the ‘secondary’ usesDevelop the secondary uses as part of the systems, indeed make the case for the investment as part of the basis of the pooled uses

26. Simulation exercises funded by the Clinical Research Collaboration • Screening and surveillance • Clinical trails • Biomarker data • Epidemiological data

27. Information governance • Hierarchical system • Aggregate data • Anonymised data • Pseudonymised data • Identifiable individual level data with consent of individuals (or their ‘guardians’) • Identifiable individual level data without consent of individuals only if case made and permission granted by Information Governance Board • Trusted honest broker

28. The Information Centre for health and social care Watch this space !! www.ic.nhs.uk Business Plan and Information Strategy Launch Denise Lievesley, Chief Executive 20 March 2007