The Challenge with Healthcare Data Ownership
The digital era has shepherded in new challenges and opportunities in healthcare. The shift from handwritten medical notes to electronic health records has raised important questions about access, shareability, and ownership of health-related information. Today, the vast majority of healthcare providers use electronic health records that afford consumers the ability to view and download health data created at those institutions.
Given that medical records rely on and are personal to individual consumers, it is intuitive to assume that those consumers own their medical data. However, due in part to intellectual property laws and the fact that medical records tend to include professional medical opinions, data ownership tends to legally reside with the creator or author of the record itself. The specific data ownership laws differ from state to state, but federal law provides consumers with rights related to the security and privacy of their health data.
Progress and Grey Areas in Democratizing Data
The progress made thus far in helping consumers access their health data will likely prove invaluable in helping to engage consumers in their healthcare and thereby empowering them to lead healthier lives. Consumers do indeed have the right not only to view their records but also to obtain those records in the format of their choosing. Providing consumers access to this health data also empower healthcare providers to get a more holistic view of consumer health-data, which can improve clinical decision-making. From a health perspective, consumer access to data appears to be headed in the right direction.
While consumer health is the priority in healthcare, another issue related to consumer data that has not yet been adequately solved is the use of consumer data as digital assets. If healthcare providers who own consumer data de-identify that data or remove the personal information attached to that data, then the data is no longer protected by the Health Insurance Portability and Accountability Act (HIPAA). What that means is that the owners of this valuable data can sell it without compensating the consumers, without whom, the data would not exist.
Ideally, consumers could not only access and review their medical records but also share it with healthcare providers and other third parties, and sell it to, for example, pharmaceutical companies or clinical research organizations. These goals are central to the White House’s Precision Medicine Initiative, which aims to make health data portable and conveniently shareable. However, even as consensus grows around the goals for consumer health data, there is one major challenge associated with this democratization of data ownership. That is, effectively decentralizing health data requires security measures that ensure that the added layer of transparency is not accompanied by an ability for people to alter the data.
Patientory Leverages Blockchain as a Solution
Patientory’s blockchain approach provides a solution to this healthcare data security challenge while also driving down costs through lower transaction fees and overhead. Like blockchain strategies that have been heavily and successfully adopted in the finance industry, Patientory’s blockchain will provide a decentralized database where information can be rapidly updated and accessible to a multitude of users. Patientory’s semantic technology will help healthcare providers and consumers alike as they work together to understand and improve health from cradle to grave.
