Paper long abstract:

For diabetes type 1 the development towards stricter regulation of blood-glucose levels is associated with lower risk of long term complications (such as neuropathy, nephropathy, retinopathy, cardiovascular disease). A stricter regulation changes disease management practices of patients and health care professionals. To attain these ideal blood-glucose levels (preferably between 4.4 and 6.6) patients have to measure, log and analyze a few times a day the variability of blood glucose levels in connection with food intake, insulin dosages, stress levels and physical exercise. Technological devices to support patients with doing this work (e.g. blood glucose meter, blood glucose sensor, insulin pump) are increasingly interconnected and connected to online disease management tools. Data is no longer shared exclusively between doctor and patient but also between patient and clinic, medical device companies and other companies offering data sharing services.

Through desk research and interviews with stakeholders this research and presentation has explored what has changed in self-management practices for people with diabetes type 1, in the relationship between patients and other actors, and what issues arise from these changes. With more stakeholders having access to data, goals for data collection and data sharing have expanded from disease management to organizing care, innovation of medical devises, monitoring use and commercial gain through profiling and marketing. This asks for revision of informed consent practices and puts data protection under pressure.