Blockchain Technology in the Health Data Ecosystem : A Qualitative Study on the Role of Blockchain for Health Data

Sammanfattning: During the last few years, there has been increasing interest in making medical records more centered around patients. Empowering the patient more in the care process has proven to increase the quality of care. It can also enable increased data sharing among different actors, where today patient health data is locked into thousands of separate data silos. Meanwhile, growth in portable medical devices and patient-generated health data (PGHD) poses a new source of valuable data which today has limited utilization in clinical settings. In solving these issues of data availability without compromising the privacy of patients, blockchain has been suggested to play an important role through a more patient-centric model of controlling information. The purpose of this study is to investigate how blockchain can solve data availability and security issues in the healthcare system. We explore the research question from a Sweden-specific context by first defining the current state of the Swedish health data ecosystem, and then analyzing how blockchain helps in increasing the availability and security of personal health data. Qualitative methods were used, and data was collected through both a literature review and an interview study where 16 semi-structured interviews were conducted with Swedish governmental agencies, EMR providers, informaticians, as well as blockchain experts. The current issues in data availability and security in the Swedish healthcare system were identified together with the benefits of using blockchain in this context. Our findings suggest that Sweden has already solved many of the problems other countries face, limiting the marginal benefit of using blockchain. However, problems of sharing raw data persist and blockchain has benefits in managing accesses to health data from both regulatory and privacy perspectives. There are also benefits of using the technology for ensuring the quality of PGHD as well as providing increased security for health data. Lastly, we propose and discuss three separate blockchainbased solutions to be used in healthcare. A major contribution to literature lies in finding that system barriers in form of legislation and technical and semantic interoperability are issues that first need to be resolved in order to harvest the full value of using blockchain technology - issues often understated in other papers. We call for future studies to investigate practical use-cases such as small-scale consortiums addressing specific data sets or patient groups to provide proof-of-concept on how the technology performs in terms of cost, integrity, security, and scalability in for personal health data.