Balancing patient control and practical access policy for electronic health records via blockchain technology

Electronic health records (EHRs) have revolutionized the health information technology domain, as patient data can be easily stored and accessed within and among medical institutions. However, in working towards nationwide patient engagement and interoperability goals, recent literature adopts a very patient-centric model---patients own their universal, holistic medical records and control exactly who can access their health data. I contend that this approach is largely impractical for healthcare workflows, where many separate providers require access to health records for care delivery. My work investigates the potential of a blockchain network to balance patient control and provider accessibility with a two-fold approach. First, I conduct a survey investigation to identify patient concerns and determine the level of control patients would like over their health information. Second, I implement a blockchain network prototype to address the spectrum of patient control preferences and automate practical access policy. There are conflicting demands amongst patients and providers for EHR access---privacy versus flexibility. Yet, I find blockchain technology, when manipulated to model access states, automate an organizational role-based access scheme, and provide an immutable history of behavior in the network, to be a very plausible solution for balancing patient desires and provider needs. My approach is, to my knowledge, the first example of blockchain\u27s use for less patient-centric, nudge theory-based EHR access control, an idea that could align access control interests as academics, the government, and the healthcare industry make strides towards interoperable, universal patient records

Dwarna : a blockchain solution for dynamic consent in biobanking

Dynamic consent aims to empower research partners and facilitate active participation in the research process. Used within the context of biobanking, it gives individuals access to information and control to determine how and where their biospecimens and data should be used. We present Dwarna—a web portal for ‘dynamic consent’ that acts as a hub connecting the different stakeholders of the Malta Biobank: biobank managers, researchers, research partners, and the general public. The portal stores research partners’ consent in a blockchain to create an immutable audit trail of research partners’ consent changes. Dwarna’s structure also presents a solution to the European Union’s General Data Protection Regulation’s right to erasure—a right that is seemingly incompatible with the blockchain model. Dwarna’s transparent structure increases trustworthiness in the biobanking process by giving research partners more control over which research studies they participate in, by facilitating the withdrawal of consent and by making it possible to request that the biospecimen and associated data are destroyed.peer-reviewe