Statistics Division Department of Health Richard Willmer Statistics Division Department of Health

Outline Actions taken Wider context - related developments Issues when considering developments of registers Views from you on next steps/priorities

Disease Registers - Our Healthier Nation Commitment We will strengthen the information base on chronic diseases in the population by establishing a series of disease registers in different parts of the country. These registers will enable us to know, for example, how many people in a population are suffering from coronary heart disease, stroke, diabetes, asthma, and high blood pressure. They will act as a base for the investigation into disease causes, for evaluating new ways of delivering services as well as tracking changes in disease occurrence over time. These registers will draw on the work, which we have already put in train through our Information for Health programme, and will complement the existing registers for cancer.

Actions taken Commissioning of John Newton’s report. Draft Report 2001/Final Report 2002. Bridging grants agreed early in 2002 for Registers where funding would have otherwise ceased. Research ‘call for proposals’ in 2002 to establish or maintain registers. Bid for funds to cover main proposals in Spending Review (SR2002).

Wider context - related developments Practice Based Registers - GP Contract many have asthma/diabetes registers ‘virtual registers’ - relevant subset of records payments linked to having a register/ managing long term conditions.

1. Integrated Care Record Service Information for Health - Delivering 21st Century IT Support for the NHS 1. Integrated Care Record Service operating across health and social care support the provision of high quality care conformant to national standards incorporates concepts of EHR/EPR currently developing high-level description detailed requirements specification to follow shortly.

Information for Health (contd) 2. National Patient Record Analysis Service quantitative analysis of structured person based data. 3 potential areas - IT systems - provision of analytical tools - analytic staff Current consultation on strategic outline case (SOC) www.doh.gov.uk/ipu/whatnew/index.htm

Other Data Set Developments/ NSF Information Strategies eg. Mental Health local specification national system being put in place to collect data data to flow from April 2003 www.nhsia.nhs.uk

Hospital Episode Statistics new system better linkage of records links to ONS mortality expansion of scope expansion of access - Safe Havens

Links to Clinical Audit uses of data for several purposes move of focus to CHI/CHAI from DH/NICE funded programme being pulled together by CHI

Directory of Clinical Database (DocDat) DH funded Developed by LSHTM Additional information welcome www.lshtm.ac.uk/docdat

Review of Public Health Information Sources commitment in Our Healthier Nation delayed following StBOP due to start soon help look at information priorities

Issues when considering Developing Registers Clear on purposes and benefits to patients/public Address key health priorities Understanding of benefits to other stakeholders Support of stakeholders Knowledge of existing data developments in area (adding value to what is already being done) Confidentiality Burden on data collectors Use of national data standards where appropriate

Questions What do you see as key issues for developing registers in the future? How are developments in registers best prioritised?