1. Improving access to health and social care information Statistics User Forum meeting 18 February 2007 Dr Pam Westley

2. Format for today Introduction The Information Centre Balancing access with protection Where we are now The IC vision for the future Some steps on the way Hearing your views

3. The Information Centre Background The Information Centre for health and social care (The IC) – based in Leeds - was created in April 2005 out of the former NHS Information Authority and the Department of Health Statistics Unit. The IC is a special NHS health authority created to collect, analyse and distribute facts and figures for health and social care communities in England. Our overriding aim is to put information at the heart of decision making for front line staff, providing better services for patients and clients.

4. The Information Centre strategy

5. The Information Centre values

6. The Information Centre services

7. The Information Centre statistical services

8. 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 avoid ignorant duplication, permit deliberate replication, ensure that the value of the data is commensurate with the resources used to collect it deliver the data back to the providers

9. The key principles of good information Valued –accepted as having authority and value. People understand it and are prepared to exchange it to achieve mutual benefits Straightforward to collect –a natural and expected by-product of providing and using health and social care Meaningful –always have relevance to its users, such that it improves and adapts to the way it is used to fulfil different purposes at different times Easy to access –be available to people who need it when they need it, within clear rules of access, ensuring compliance with all confidentiality and security aspects of data access Used –acquires value when it is used in the process of making decisions and achieving positive results

10. The Information Centre aims to Work collectively to transform the flows of information, transform attitudes towards information and the ways people use it To improve quality, fairness and efficiency in health and social care

11. Balancing access with protection – Protecting personal information Data Protection Act Section 60 of the Health and Social Care Act Patient Information Advisory Group Security and Confidentiality Advisory Group Care Record Guarantee Statistical disclosure controls Role-based access to NHS information systems

12. Balancing access and protection- Accessing information Freedom of Information Act Copyright and licensing Re-use of Public Sector Information Regulations Reducing burden initiatives Key questions Who wants access? And to what? Is person-identifiable data always necessary? AccessProtection

13. Who is the information for? Patients and service users Commissioners The public Policy makers Providers Managers and regulators

14. Tension between local and national needs Ideal situation: the same information of value in serving both national and local needs, to reduce burden of data collection Worse situation: national needs distort local priorities and demands are made for associated data collection without consideration of local resource implications

15. Where are we now? overlapping data collections are constructed to fulfil different purposes data collected to fulfil one purpose fails to meet another purpose data are not standardised or collated at national level to enable comparisons to be made data are not organised for ease of use people find it hard to access data and information fear of how data will be used stops it being shared or even collected perfect data fails to provide useful information Changing strategic context provides golden opportunity to change

16. What is the IC doing to improve access? Promoting and developing consistent and transparent principles for data access and information sharing for IC information Developing as a pro-active honest information broker for health and social care Partnership working with Connecting for Health to harness technology to share and protect NHS data New services: Secondary Uses Service Information Catalogue Knowledge services to translate data and information into knowledge

17. IC vision for data access and information sharing Code of openness for all IC information Responding to all information requests quickly, helpfully and transparently Data access policy for all IC held data All requests treated on a fair and equal basis Providing information that meets user needs, is objective, meets professional standards and is in accordance with relevant legislation, guidance and standards Release practices to meet National and Official Statistics standards Impartial, independent, trusted and professional statistics Information sharing of personal information Facilitating access for users, maximising the use of information while protecting individuals confidentiality

18. Pro-active information broker for health and social care 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 Knowledgeable about health and social care information

19. Secondary Uses Service Overview SUS is a central repository of health data for management and clinical purposes other than direct patient care e.g. care planning, policy development and R&D It is being delivered as part of the National Programme for IT, with The IC working jointly with NHS CfH to define user needs and provide user support The existing Hospital Episodes System is being integrated into SUS, as is access to Mental Health Minimum Datasets SUS is a live service already providing support for PbR and access to CDS data. In future releases, SUS will include supporting demographic data and will provide support for the analysis of national clinical audit information (see www.cfh.nhs.uk/sus) www.cfh.nhs.uk/sus Benefits Access to national data covering NHS commissioned care Safeguards to improve data quality and consistency of recording Tools which allow users to extract data for their particular needs Capture of data from other operational systems and simplified data submission Security measures to ensure the confidentiality of identifiable information

20. Information Catalogue The Catalogue is a single point of reference of current and proposed national data collections relating to health and social care It provides a searchable summary of over 600 national information collections relating to Health and Social Care Significant work programme underway to broaden scope & depth of information provided Already established as a cornerstone in enabling co-ordination of and reduction in collections. Developing knowledge management services around the Catalogue Vision is for the Information Catalogue to be the prime reference source for all data available on Health & Social Care Available to all at http://www.ic.nhs.uk/infocathttp://www.ic.nhs.uk/infocat

21. Summary Access arrangements are currently complicated and difficult to navigate The IC is uniquely placed to provide greater consistency and transparency of access and sharing across health and social care Starting with its own information services and building new services such as SUS and the Information Catalogue Moving from data and information to knowledge to support information use Striving to put information at the heart of decision-making in health and social care But what are your ideas for improvement? To find out more visit the Information Centre website http://www.ic.nhs.uk