Patients and health data: uses and perspectives - French Federation of Diabetics

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:

• either qualitative in the form of individual interviews or focus groups
• or quantitative through online questionnaires from a database of more than 40,000 email addresses including nearly 6,000 diabetes-actors (people who volunteer to participate regularly in these studies)
• these studies have even been extended to the National Health Data System with the methodological support of the Health Date Hub (HDH) and the clinical research company Sanoia, which provides an exhaustive view of practices based on the medico-administrative databases of the Health Insurance and Hospitalization (PMSI).

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:

1. SELF-EMPLOYMENT - This is first of all the use by the patient and for himself. The tools allow the patient to manage his or her disease on a daily basis in a much more optimal and autonomous way than in the past.
2. COORDINATION, FOLLOW-UP BY THE CARE TEAM - The transmission of this data allows communication with the doctor or his team thanks to a large amount of information collected and sent by these digital tools via the various applications or hosts.
3. ACCESS TO CARE - New technologies allow patients to be monitored remotely, for example, through remote monitoring programs or to have recourse to expertise that is not available locally through remote monitoring or tele-expertise.
4. EVALUATION OF TREATMENTS, PATHWAYS AND HEALTH POLICIES - Digital technology can enable patients to participate, with the help of structures, in the evaluation of treatments or care methods in real life, via the transmission and collection of their data. This evaluation of both technologies (devices or drugs) and health policies (pathways - recommendations, etc.) is an essential aid in choosing the best strategies in terms of quality, safety and efficiency. This is also the purpose of Article 51-type experiments.
5. RESEARCH - The mass of data generated by patients can feed gigantic real-life databases that will enrich research. It is therefore necessary to contribute to this collection in order to ensure our digital sovereignty in health, by enriching, for example, the catalog of HDH data warehouses.

But these exciting prospects come up against two major obstacles:

• First, the absolute necessity of establishing a consensus or a semantic interoperability repository. These data must not only be structured to be intelligible, but also compatible with each other in order to be used, collected and adapted to monitoring tools. The examples of remote monitoring and insulin pumps highlighted in the Diabetes-LAB studies highlight this difficulty.
• Secondly, this evolution comes up against a digital divide that is not always linked to age. While it is true that in general it is the younger patients who are the most comfortable with digital health care, things have changed in recent years. Today, patients over 60 have little or no problem using the digital tools they have learned to use during their professional lives and is it mainly patients over the age of 80 who struggle with new digital care solutions.  Age-related considerations remain, however the real divide is at the social level. All the studies show that the most socially disadvantaged people are also those who are the furthest from healthcare and digital health. This is a real challenge for the future. It is the challenge of learning e-literacy in health: a social problem of health promotion that must be addressed from a very young age.

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

Fédération Française des Diabétiques

How would you like to be involved in health data reuse? 

Have your say here!