1st Annual EUBIROD meeting Dasman Center for Research and Treatment of Diabetes, Kuwait City Kuwait City, Kuwait, 2nd-4th May 2009

The Tayside Diabetes Register

R.Mc Alpine, U.Dundee, Scotland, UK

First BIRO Academy Residential Course, Kuwait City, Kuwait, 2nd May 2009

Slides

The Tayside area is located north of Edinburgh and is a good proxy for the population of Scotland, including a mix of agricultural and industrial lifestyles. The DARTS project conducted in 1996 was mainly an audit and research study aimed at monitoring quality of care for diabetic patients through electronic record linkage. In ten years, this study produced a wealth of knowledge on the topic and secured funds for the activity of a large team that is now managing not only the local network on a continuous basis, but the Scottish Diabetes Register.

In this presentation, Ritchie McAlpine, data facilitator for the Tayside Diabetes Network, briefs the results of such experience from a particular position in between the information technology group and the actual needs of real patients. Nowadays, the “SCI-DC” Collaboration includes data from about anything done on diabetic patients, from clinics to practices, biochemistry, demography, eye screening, etc., which is automatically transformed into audit tables.

Ritchie emphasizes how the main task of the network is to translate such huge mass of data into recommendations for policy making through the Scottish Diabetes Survey, information for the Scottish Diabetes Research Network, and reports for the patients through targeted information material. Sometimes the emerging picture is not encouraging, for instance we know that diabetic patients are increasing. However, the good news are that some of the major outcomes are also improving, and this can be also due to the better information available. That is not always true: Ritchie reports some entertaining story about data, e.g. a subgroup of patients that was reported as deceased, with an average“life after death” between 1-4 yrs, and a “resurrection rate” close to 0.01%.

According to McAlpine, this proves that inaccuracies do always exist, but if data systems are allowed to evolve, they can be improved and play a dramatic role in helping to fight diabetes.

Feedback directly provided to clinicians and patients allow to benchmark and optimize systems through a shared effort. In Tayside, the DARTS study evolved to become a sophisticated system used to support decisions and manage the disease. That has become an integral part of the care process.

By the way, the “garbage in, garbage out” principle always apply, and the Tayside team is always busy in removing the garbage when/where they find it. However - Ritchie concludes – it is also true that job never ends. The good side of the coin is that the more we know, the more we can change, and the more we can improve the outcomes of patients.