Last week Eric Topol and Leonard Kish published a piece in Nature Biotechnology arguing for why the patient should own his or her data. One of the preliminary points they make is the lack of a place to store one’s data:
“Yet currently there is no ‘home’ for such data over time, at either the individual or the population level. Although there are early proposals for how some of it could be bundled with one’s electronic medical record7, it seems unlikely this will occur, in the United States at least, given the landscape of balkanized health records and multiple providers of care for each person. Ironically, we’re looking at the prospect of a new, high-definition picture of individual human beings, and at the same time for that person’s data to be homeless, dispersed and inaccessible. Where the data live will determine the maps we can create and the directions we can go in with health, both as individuals and as a society. We propose here that the key step to liberating personal health data and realizing their true potential in human research and clinical practice is the provision of data management systems that give individuals the right to own their own data. The technological advances developed for evolving digital currency systems, which allow individuals to hold and secure digital assets without a central authority, are being used to create new digital property systems, including personal medical data property. Whatever the means, it is critical for individuals to seize ownership of their data in order for the real benefits of a new, datadriven high-definition era of medicine to be actualized.”
The balkanization of health data in EHRs, they argue, is a problem that indirectly leads to poor outcomes. Ownership, is the key to exchange or sharing of data that leads to better use of data for research and for better health outcomes downstream. They use bitcoin as a model for how health data could work, a subject we will cover later this week with an interview with our Advisory Board member, Melanie Swan. Which raises the subject of health bank, who the authors cite as another critical component in the health data ownership model they espouse:
“There are already models to achieve individual ownership such as Switzerland’s healthbank, an entity owned and governed by its citizen members (https://www.healthbank.coop). For no charge, Healthbank empowers users to store, manage, share and benefit from their personal health information according to each user’s individual needs. It has the intent to create a global data transaction platform to support medical research. The benefit of using a distributed, peer-to-peer data store, however, is that it would not need to be managed or controlled by any third party, no matter how well intentioned; it would be controlled by contributors on a truly global scale.”
As we mentioned last week, our Health Data Lab is also exploring the viability of Blockchain technology that bitcoin is built upon for health data and we welcome your insights on this as well. We are incredibly excited to see the recognition of healthbank by Eric Topol and Leonard Kish in one of the more important emerging health data policy issues that they are framing as a basic civil right!