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.

The evolution of emerging technologies that use Radio Frequency Electromagnetic Field (RF-EMF) has increased the interest of the scientific community and society regarding the possible adverse effects on human health and the environment. This article provides NextGEM’s vision to assure safety for EU citizens when employing existing and future EMF-based telecommunication technologies. This is accomplished by generating relevant knowledge that ascertains appropriate prevention and control/actuation actions regarding RF-EMF exposure in residential, public, and occupational settings. Fulfilling this vision, NextGEM commits to the need for a healthy living and working environment under safe RF-EMF exposure conditions that can be trusted by people and be in line with the regulations and laws developed by public authorities. NextGEM provides a framework for generating health-relevant scientific knowledge and data on new scenarios of exposure to RF-EMF in multiple frequency bands and developing and validating tools for evidence-based risk assessment. Finally, NextGEM’s Innovation and Knowledge Hub (NIKH) will offer a standardized way for European regulatory authorities and the scientific community to store and assess project outcomes and provide access to findable, accessible, interoperable, and reusable (FAIR) data.

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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 MESSAGES Experiential 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.