Paper long abstract:

Not only is the information regarding our personal health and bodily functions increasingly digitized, the network of parties that has interest in and potential access to this personal information is expanding. Paradoxically, this diminishes people's prospect for personal control. Without some form of control the health of the citizen is in the hands of market forces. What kind of control is morally and ethically appropriate or even necessary in our modern participatory democracy? First it is argued, that some collective health literacy is required to enable an informed debate about guaranteeing equal access to care, maintaining the quality of care and keeping the costs within reasonable limits for citizens and patients. Second, it is argued that health literacy is not only a requirement for an informed debate, (individual) health literacy is by itself a necessary condition for the appropriate use of devices that quantify, measure and monitor bodily functions. When data related to bodily functions become combined with DNA and imaging data, medical records and lifestyle data on patients and consumers, the need for collective health literacy becomes even stronger. Without collective health literacy the promises of personalized medicine are a complicit illusion, not a viable future. The problem must not be taken lightly: the general public, health professionals and their patients, as well as journalists and politicians do not adequately understand and internalize health information. This applies to health statistics, but in fact pertains broadly to how many reason about, conceptualize and interpret health information and questions.