1. Statistics Division Department of Health
Richard Willmer
Statistics Division
Department of Health

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

3. 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.

4. 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).

5. 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.

6. 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.

7. 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)

8. 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

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

10. 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

11. Directory of Clinical Database (DocDat)
DH funded
Developed by LSHTM
Additional information welcome

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

13. 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

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