The collection of health data (blood glucose levels and treatments), initially an analog (manual?) process which was later digitised, has always played an important role in the daily life of people with diabetes. For a long time now, diabetics have used the recordings of their biological data (collected by glucose meters) to measure their daily, or even multi-daily, blood glucose levels, in order to monitor their glycemic balance, or to adapt their treatment and in particular their insulin doses.
A certain number of "capillary" glucose meters have already become "connected" when coupled with digital applications that faciliate monitoring and personalised treatment.
This practice has evolved with the arrival of continuous, digital and connected glucose sensors, which allow data to be collected and transmitted to servers via mobile applications, or even transmitted directly to medical devices (pumps) that administer insulin semi-automatically (conventional pumps or so-called hybrid closed-loop pumps)
While this data represents a value source for the evaluation of medical technologies or research, it is also of immense individual interest to personalise the treatment of all diabetics.
The advent of telemedicine allows us to enrich this use in other ways.
As a result, digital health care is a major topic of reflection for the French Federation of Diabetics. One of their core missions is to contribute to the improvement of care and support for patients.
This desire led the president Gérard Raymond at the time to create the "Diabetes-LAB". It is a study and research structure whose mission is to design and carry out studies on the daily life of people with diabetes and their experience as patients.
For more than six years, Diabetes-LAB has been conducting numerous studies at a rate of about fifteen per year:
The analysis of all these data, which may be medical, behavioral, social, or even economic (consumption of care), makes it possible to assess the use made by diabetics of different drug or non-drug therapies, medical devices and care pathways.
Schematically, the use of digital health data can be classified into five objectives:
But these exciting prospects come up against two major obstacles:
To better understand this reality, the Federation has undertaken a national study to determine the profile of diabetics who, in 2021, have used telemedicine and teleconsultation, and thus to identify those who have not. This will allow the design of training programs for professionals and patients adapted to the needs of this population.
The collection of patient data, which belongs to the patients first, is a real collective asset, provided that patients have access to these data and that associations can be real stakeholders in these studies.
Beyond the real-life evaluation of health technologies, this will make it possible to go further and participate in the evaluation not only of treatment paths, or even of funding, but above all of our country's health policies.
When all this is in place, we will have taken another step towards democracy in health care.
JEAN-FRANÇOIS THEBAUT, NICOLAS NADITCH, MANON SOGGIU
How would you like to be involved in health data reuse?
Follow Robert and his health data on their trip. How does Robert's health data move along with him? And how can his health data be reused?
14-10-2022 Since the publication of our interim report outlining the 6,000 contributions collected from citizens, the Healthy Data team has organised a ser [...] Read more
22-09-2022 Over the last few days, the Healthy Data team has conducted three national workshops in the participating countries of the project, namely Franc [...] Read more