FROM SHARING TO SELLING: CHALLENGES AND OPPORTUNITIES OF ESTABLISHING A DIGITAL HEALTH DATA MARKETPLACE USING...

During the COVID-19 pandemic, we witnessed how sharing of biological and biomedical data facilitated researchers, medical practitioners, and policymakers to tackle the pandemic on a global scale. Despite the growing use of electronic health records (EHRs) by medical practitioners and wearable digital gadgets by individuals, 80% of health and medical data remain unused, adding little value to the work of researchers and medical practitioners. Legislative constraints related to health data sharing, centralized siloed design of traditional data management systems, and most importantly, lack of incentivization models are thought to be the underpinning bottlenecks for sharing health data. With the advent of the General Data Protection Regulation (GDPR) of the European Union (EU) and the development of technologies like blockchain and distributed ledger technologies (DLTs), it is now possible to create a new paradigm of data sharing by changing the incentivization model from current authoritative or altruistic form to a shared economic model where financial incentivization will be the main driver for data sharing. This can be achieved by setting up a digital health data marketplace (DHDM). Here, we review papers that proposed technical models or implemented frameworks that use blockchain-like technologies for health data. We seek to understand and compare different technical challenges associated with implementing and optimizing the DHDM operation outlined in these articles. We also examine legal limitations in the context of the EU and other countries such as the USA to accommodate any compliance requirement for such a marketplace. Last but not least, we review papers that investigated the short-, medium-, and long-term socioeconomic impact of such a marketplace on a wide range of stakeholders.