Towards the baseline of health research infrastructure: the development of the Self Research Network Netherlands (ZONN)

In the Netherlands, the health care system is thought to operate at different levels or lines of care. The first line of care is the general physician, the second one links to local and regional hospitals and paramedic services, the third one is embodied by the specialized academic hospitals and carecenters. Yet, increasingly, the 'zero' line of care is recognized, which is the citizen that takes care of his/her own health. Especially in the wake of healthy lifestyle management, the 'zero-line of care' is becoming more and more important.

In analogy of this, in this poster we present the 'zero line of health research'. We argue that the observational and experimental capacities of citizens constitute the baseline of health research. Their research efforts lead to functional solutions for the involved citizens and to hypothesis that entail health value for others but need further exploration. Internationally, these are known under labels such as Do-it-Yourself medicine (Wexler, 2022) or Personal Science (Wolf and Groot, 2020).

Yet, the baseline of health research is organized in a very fragmented way. There is hardly general accessible infrastructure available regarding methodology, ethics, funding, publications or data-infrastructure (Transitieteam GROZ, 2019). At the same time, this type of research tends to have little profile among either research or health professionals. Lots of potentially rich citizen science in the health domain hence remains unused. 

The poster outlines the birth of the 'Self Research Network Netherlands' (known in Dutch under the acronym of ZONN, from ZelfOnderzoek Netwerk Nederland, or ZONN). It details the learnings of different patients communities in encounters with the current health research regime, and their considerations to start building an infrastructure on their own terms. The first lines of action comprise a) an online course for patients/citizens on how to conduct self research (Personal Science); b) the identification, evaluation and development of 'workplaces for self research' and c) a dialogue model for patients and patientgroups to reflect on 'why would I /we engage in self research'.