This international seminar explored pioneering work in Sweden using disease/quality registers.
A database that includes the details of the majority of patients with rheumatological disease in Sweden has been developed by Professor Staffan Lindblad and colleagues. This database is in part updated by patients online, for example in recording their health status particularly after changing treatment regimens.
The data is combined with predictive modelling techniques to ascertain the best possible treatment combination for individuals with rheumatological disease. Professor Lindblad is a recognised innovator in Sweden and has produced some remarkable results for patients.
This approach could be useful to develop in England. With the availability of routinely collected person-level data on encounters with the NHS, there is potential to take Professor Lindblad’s work a step further to link information on treatment combinations with use of care and cost.
At the seminar delegates had the opportunity to:
- understand how pioneering work in Sweden could be developed in the UK using disease registry data and online interaction with patients;
- understand how disease registry data could be linked to other types of data;
- develop ideas on how predictive risk modelling might be used to predict outcomes for patients and identify the best options for treatment.
We were delighted to welcome speakers including:
- Professor Staffan Lindblad, Director of the Health Information Centre, The Karolinska Institute, on his pioneering work in Sweden;
- Dr Ian Rowe, Chair of BSR Clinical Affairs Committee, British Society for Rheumatology, on developing a rheumatology register;
- Dr Martin Bardsley, Director of Research, Nuffield Trust, will share innovative approaches to predictive risk modelling using routinely collected (mainly encounter) data.
The event was chaired by Professor Nick Black, Professor of Health Services Research, London School of Hygiene and Tropical Medicine.