Viewpoint story by Robert Heine, Chair EUDF Data & Registries Strategic Forum
Using data to raise awareness and initiate action to improve outcomes for people with diabetes
The way things stand, diabetes care in Europe unfortunately doesn’t get the attention it deserves. It is sad to see that the devastating impact of diabetes on morbidity, mortality and quality of life remains severely underestimated. The question we need to ask ourselves is: Why is this the case?
Diabetes appears to have lost its compelling voice.
The major stakeholders, the decision makers in diabetes care, apparently don’t see the urgency to initiate change that will result in better outcomes. Therefore, we, as major stakeholders must generate data that will raise awareness and initiate action to improve diabetes care.
The Data & Registries Strategic Forum of the EUDF is working on recommendations for the implementation of registries that will inform and drive better outcomes in diabetes care. The members, most of them very experienced researchers and clinicians, contribute with their specific expertise to the development and writing of the recommendations. The key tasks are to learn from successful registries in Europe, or elsewhere; to identify the key success factors leading to improvement of diabetes care and to write concise and compelling recommendations.
We know that a registry alone is not enough to move the needle.
There are several registries that have provided valuable scientific data leading to important publications. Sadly, the learnings from these registries haven’t been sufficiently applied to measurably improve diabetes care.
First, we need the recognition by healthcare decision makers that changes are needed. Second, the authority to initiate the development of a local/regional data registry led and managed by a dedicated team with the mandate to drive change where needed to improve the well-defined and agreed upon outcomes of care. Third, following a successful regional effort, the roll-out of a broader European registry.
The diabetes community in Europe has launched several programs and actions over the last decades, including the St Vincent Declaration, with the intent to improve the outcomes of care. These were ambitious projects with challenging treatment goals. Unfortunately, these initiatives resulted in incremental improvements that were far less than required or hoped for. In most countries the outcomes of care couldn’t be monitored because of the absence of registries.
We need to learn from these experiences and avoid making the same mistakes.
The number of people with diabetes is still increasing, as are the number of people suffering from diabetes related complications. We should and can do much better.
One of the key learnings for us is that it takes more than just a registry to improve care. It requires a well-organized and dedicated team, embedded in the healthcare system, to build a registry that informs, monitors, and drives quality improvement efforts in diabetes care.
As a diabetes community it’s our responsibility to close the gap between the scientific advances that have been made over the years and the quality of delivered care.
The time to act is now.
Learn more about the EUDF Data & Registries Strategic Forum here.
Call to action
If you have or know of a best practice with regards to data and registries that could help move the needle for quality care for people living with diabetes, we would love to hear about it. The more we know, the more we can achieve together.