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The doctor-patient relationship tends to reconfigure. The chronic patient is recognised for the ability to perform certain healthcare activities, but also for a type of expertise related to his or her personal experience with illness. However, what are the individual and collective benefits of this expertise? How is it enhanced by connected medical systems?

Professional cooperation protocols have recently been developed by the French national health authority and regional health agencies. They enable paramedical staff to perform procedures usually carried out by doctors. In the framework of bariatric surgery, the follow-up of patients after surgery is thereby assured by specialist nurses. They can make a diagnosis and prescribe vitamins, minerals and tests.

With traditional capillary blood glucose readers, diabetes patients puncture a fingertip and measure the level of glucose in the blood sample. More recently, continuous blood glucose measuring devices have become available, which not only show current blood sugar levels, but also upward and downward trends and changes over the past few hours. The aim of our analysis is to describe the specific effects of the use of these diabetes self-monitoring systems on “patient work” and on the illness experience. We will show how their use is accompanied by different forms of personal experiment and learning and reconfigures “patient work” by partially releasing patients from certain social, material, spatial, corporeal and cognitive constraints. Because these systems produce and represent data on blood sugar levels over different timeframes, patients can develop new ways of interpreting their symptoms and different ways of anticipating short-term blood glucose fluctuations. Other forms of reflexivity and self-knowledge thus emerge, bringing changes in the temporality of the day-to-day illness experience, and potentially leading to adjustments in treatment and a reduction in some of the anxieties associated with the disorder.

The way patients and their caregivers share information on various online platforms about health topics and their own experiential knowledge presents new potential environments for research, particularly as concerns health products. The information provided individually and voluntarily by patients who are members of these online communities is a new resource for identifying and understanding precisely how health products are used, assessing their effectiveness, quantifying potential adverse effects in real-life situations, detecting subtle signs that are significant for experts in pharmacovigilance and addiction studies, and developing new assessment tools to help form new working hypotheses. How patients freely express their experiences and feelings and the reality of what they share also opens the way for societal research into health products, a field that is still under-explored. Well-established regulations govern research into health products, which uses resources and methodologies that have changed little over the years. However, the development of online communities of patients presents new possibilities in this field. The challenge we face today is defining their place among traditional research techniques. This place cannot be accepted by all stakeholders unless we first establish a firm understanding of the advantages, limitations, and constraints of these communities. The round table on this topic endeavoured to: explore these issues and develop a better understanding of the phenomenon and the different varieties of online communities and networks for patients; identify possible advantages, special features, and methodological, regulatory, and ethical limitations that researchers currently face; and finally, to put forward the first recommendations in this growing field of research.