Digital home-based screening for chronic diseases: when, how and why do citizens (not) participate?
Institute for Science in Society, Faculty of Science, Radboud University Nijmegen
Supervisors: L. Krabbenborg & dr. A. F. de Winter
Jill has an interdisciplinary background since she completed her bachelor’s degree in Biology and her master’s degree in Human Biology with the specialization Science in Society at the Radboud University. While her biology education and preclinical internships focused on organic chemistry and medicine development, the Master specialization Science in Society broadened her view on medical technology and science, as a whole. With this broadened view she investigated the impact of diagnostic and treatment technologies on the lives of men living with prostate cancer for her Master thesis, which was recently published in collaboration with Wieke Betten and Lotte Krabbenborg.
While early screening via home-based digital testing is seen as a promising emerging medical technology for prevention, early detection and treatment of chronic diseases, research showed that it is not self-evident that citizens are participating in digital screening tests. There can be different reasons, for example, because of low health literacy or the experience of practical barriers one might not be able to use digital screening tests. Also, one might not be willing to participate in digital screening, for instance because of not seeing the added value of screening or the seriousness of disease, due to religious beliefs or resistance to screen based on ethical concerns such as the right not to know.
Within the transdisciplinary project Check@Home, a screening programme for cardiovascular disease, chronic kidney disease and diabetes, Jill will investigate the attitudes, needs, (ethical) concerns and real-life experiences among citizens, including socioeconomically disadvantaged groups, with regard to the whole screening process. This consists of assessment of attitudes towards screening, responses to the invitation strategy to participate in the screening, acceptance of the Check@Home screening app and investigation of actions if risks of disease are detected, such as change of lifestyle or adherence to treatment. To investigate this and to take on the opportunity to adjust the technology in an early phase to stimulate a better alignment with ethical and societal needs, Jill plan is on using participatory mixed methods. This includes co-creation workshops with citizens, surveys and in-depth interviews with (non-)users regarding the screening process and constructive technology assessment workshops with relevant stakeholders.
- van der Kamp, J., Betten, A. W., & Krabbenborg, L. (2021) In their own words: A narrative analysis of illness memoirs written by men with prostate cancer. Sociology of Health & Illness, 44(1), 236-252. Full text
- van der Kamp, J. (2022) Hansson Kristofer and Irwin Rachel (eds) (2020) Movement of knowledge: Medical humanities perspectives on medicine, science, and experience. Science & Technology Studies, 35(3), 95-97. Full text