Paper short abstract:

People in vulnerable situations (PiVS) are underrepresented in decision-making processes on medical innovations. Who PiVS are and where to find them remains challenging. Through participating in activities already out there and focus groups, I study how and why PiVS participate in digital screening.

Paper long abstract:

People in vulnerable situations (PiVS) are underrepresented in decision-making processes regarding medical innovations. Researchers and policymakers often regard them as ‘hard-to-reach-groups’ because their voices remain invisible in deliberative practices e.g. discussion panels or letters of protest. I study participatory practices of PiVS within the Check@Home consortium. Check@Home aims to prevent chronic diseases through digital home-based screening.

Participation of PiVS in Check@Home is considered important by medical scientists for the potential health improvements in these groups. Through participant observations and focus groups, I study how and why PiVS participate in digital screening.

Who PiVS are and where to find them remains challenging. My participant observations show how Check@Home’s assumptions on the meaning of vulnerability matters for recruitment strategies. My recruitment follows Horstman & Knibbe (2022) by focusing on low-income neighbourhoods. I participated in activities already out there (Pols 2023), e.g. at community centres and an e-health information bus that drives to low-income neighbourhoods. PiVS where hesitant to discuss sensitive topics, e.g. disease and (digital) literacy, with a researcher. Participation of PiVS requires building trust and networks. The focus groups showed that PiVS could be excluded when digital home-based screening is introduced. They are less digitally literate and fear of missing out on health care because of its digital nature. I use the work on (non)users in STS (e.g. Wyatt 2003, Wiener & Will 2016) to make sense of these findings and argue that exclusion of users has different levels, mediated by abilities and decisions of developers on the design of technology.