Datafication of Health: User, Patient, and Professional Perspectives

Datafication of health is the process of collecting, analyzing, and visualizing data about health in order to frame and define the meaning and implications of health and disease and expand prevention and care pathways. It is closely related to digitalization of health care, the process of transforming the operating models and social interactions of health care using information technology. In this international scientific conference, we devote attention to the psychological, philosophical and ethical aspects of datafication of health. The conference encompasses empirical research on user, patient, and professional perspectives, as well as philosophical and ethical critique of datafication. Some questions to be considered are: 

• What is the relationship between datafication, medicalization, and responsibilization of health? (“Responsibilization” refers to efforts to make people responsible for their own health.) 
• How does datafication create different health trajectories and effects within different population groups and roles (e.g., young, older, people with chronic illness, the “worried well”, long term care recipients, informal caregivers, women, men, other gender identities, people of color)? 
• Under what conditions (if any) can datafication of health provide knowledge and empowerment to users and patients? How can technology design best respond to user and patient perspectives concerning health and access to care? 
• What effect does datafication have on clinical roles and responsibilities and the patient-clinician relationship? Can the practice of medicine be made more caring and trustworthy through new techniques of using health data? 
• How do ethical concerns and legal constraints regarding data privacy influence datafication of health, and what distinctive concerns arise about health data privacy in the age of big data? 

The perspectives of users, patients, and professionals on these questions are of particular importance in this conference. On the afternoon of the second day of the conference, a valorization workshop will be held with stakeholders in the NWO-MVI research project “Mobile Support Systems for Behavior Change,” which is our sponsor. This will include workshops, focus groups, and presentation of the results of the project.