Patient information ownership in the age of digital health and big data

Abstract

Abstract Background In the context of digital health and the increasing capabilities to derive, store and use information, Big data, and data analytics provide an exceptional perspective towards the evolution of medicine and public health. We collect patient data at unimaginable scale thanks to technological improvements such as wearables, sensors, smart and mobile devices. We are digitizing health on our way to improve cares. The other side of the coin reveals specific issues: it is all about personal information. The risks we face in regard to privacy, autonomy and ultimately justice are worth debating. Aim To consider whether ownership of patient data in the context of digital health and Big data is a good way to guarantee both privacy and the social interest in the field of public health. Methods Historical, documental, ethical research. Results The abilities to collect and store zettabytes of health-related information is spectacular, but learning how to structure and optimize the use of this information is pivotal for the future of public health. People are sensitive in terms of “ownership”, rights and privacy, although the idea for actual ownership of health information is not quite popular. Given the fact, that it is personal data, a lot of concerns are related to ensuring privacy. One way to do it is by recognizing patient ownership over their data. The major issue with this, is that it might limit, or even prevent public interest, and so the public benefits. Having in mind the huge commercial interest in health data, that concern looks relevant. When applied in healthcare Big data has the potential to provide important data analytics, which means that we can move to next step in healthcare development - improving disease prevention and health promotion, which are vastly ignored in favor of clinical care. In this specific environment, it is highly questionable whether patient`s ownership would bring more benefit, than harms in the shared goal of improving healthcare. Key messages What people might do if their health data is their property, might reflect in a bad way the common goal to structure and use it for health improving. Patient data ownership might not be reasonable in the long run, even though from an ethical standpoint and with regard to patient`s autonomy looks fair.