A qualitative approach to experiential knowledge identified in focus groups aimed at co-designing a provocation test in the study of electrohypersensitivity.

Patients' experiential knowledge is increasingly recognised as valuable for biomedical research. Its contribution can reveal unexplored aspects of their illnesses and allows research priorities to be refined according to theirs. It can also be argued that patients' experiential knowledge can contribute to biomedical research, by extending it to the most organic aspects of diseases. A few examples of collaboration between medicine and patient associations are promising, even if there is no single, simple methodology to apply. This article provides feedback on a project involving the experiential knowledge of electrohypersensitive persons with a view to developing an experimental protocol to study their condition. It presents the participatory approach with focus groups that was implemented and reflects on ways to take advantage of experiential knowledge. It also demonstrates the complexity of the electrohypersensitivity syndrome and reflects on the difficult transition between the experiential knowledge and the experimental design of provocation studies.KEY MESSAGESExperiential knowledge is a valuable source of information for research and the design of investigation protocols.The participatory approach allows co-designing protocols by drawing on experiential knowledge.The controversial dimension of EHS reveals the complexity of translating experiential knowledge into an experimental protocol.

Leviers et freins à la participation à une étude d'exposition dans l'électrohypersensibilité.

INTRODUCTION: People reporting electromagnetic hypersensitivity (EHS) attribute various functional disorders to their exposure to electromagnetic fields (EMF). To date, the results of provocation studies do not support the existence of a causal relationship between EMF and the reported symptoms. However, these studies suffer from various methodological limitations, including low statistical power due to an insufficient number of volunteers. PURPOSE OF RESEARCH: The objective of this paper is to present the motivations of EHS people who participated in co-creation workshops towards the development of a provocation protocol that would overcome the limitations of existing studies and improve EHS knowledge. RESULTS: In a first phase, participants were invited to discuss the reasons for (not) participating in such a provocation study in order to understand barriers and challenges. Among the drivers, the improvement of the knowledge and the sensitization of the medical profession, as well as the official recognition of EHS and its implications are of great importance. The participants also stress the interest of getting to know themselves better and see the study as a step in the development of therapeutic tools. Among the barriers, people emphasize fears about the project independence and results neutrality, as well as methodological choices. Some also highlight the consequences of the test on their health (suffering) and social aspects. CONCLUSIONS: We identify precautions and recommendations for the implementation of a collaborative work with EHS people and in their perennial inclusion in an exposure study.

Co-Designed Exposure Protocol in the Study of Idiopathic Environmental Intolerance Attributed to Electromagnetic Fields.

The hypothesis of an electromagnetic origin of idiopathic environmental intolerance (IEI) attributed to electromagnetic fields (EMF) has been widely investigated by provocation studies, which consist of deliberately exposing people with IEI-EMF in laboratory settings to particular EMF to observe volunteers' reactions. In the majority of these studies, reactions have been found to be independent of exposure. However, most of these studies suffer from design and methodological limitations that might bias their findings or reduce their precision. As provocation studies are best suited for isolating the effects of EMF, innovative protocols should be applied. In the ExpoComm project (PNREST Anses, EST/2017/2 RF/19), several innovations have been introduced: the involvement of people with IEI-EMF in the development of the protocol, the attenuation of the anxiogenic nature of the tests, the individualization of the protocol, the validation of the neutral or normal reactivity state before the test, and the use of a cocktail of real, rather than artificially generated, sources. The objective of involving people with IEI-EMF was to increase the relevance and acceptability of the protocol, while respecting technical constraints and scientific quality requirements. This paper describes the protocol resulting from the collaborative process. Bioelectromagnetics. 2020;41:425-437. © 2020 Bioelectromagnetics Society.