Free the Data
Lately over the past month, I have been lucky enough to sit in with some of the bravest and boldest ventures I’ve seen in HealthTech (not to mention the venture teams looking at them). These meetings have (most likely not just by chance) been coupled with several high quality articles on health care data and regulation in journals such as JAMA and the NEJM. In the midst of the swirling idealism, I have reached a single conclusion: It is time to free the healthcare data.
Heath data is close to the most silo-ed data source that exists today. Much of this is justified by privacy concerns, stemming from unwanted consequences when the data hits the wrong hands, such as insurers and employers, despite legislation to protect the healthcare consumer. Other data sources are readily available for developers and marketers to manipulate in today’s Internet of Things (IoT), telling me what I want to choose next on Google or Amazon before I, myself, am privy to these subliminal musings. Safeguards, such as HIPAA, have unintentionally hindered us in the information age, hindered us in using the same tools and logic that allow us to extract transaction dollars out of a consumer to instead affect human lives and health. Though as Adam Goulburn at Lux Capital recently pointed out, “Something is happening with HIPAA”(1).
Many creative and bold approaches are being used to tackle the area of health data, from APIs for health data interfacing like HumanAPI, to personal health platforms like HealthSpek, and companies that provide HIPPA as a service, like Aptible in the latest YC class. Anyway you slice it, these companies have all come to the conclusion that we cannot meaningfully tackle the “big” health and wellness questions until we have access to the data.
In the end, the data I am speaking about is my data (see figure for schematic of health data sources (2)), and the consumerism of healthcare will eventually create an inexorable push to access said data. I imagine a world where I carry my health data with me, from all sources, with instant updates and access. A world where applications and interfaces are built on and through APIs that clean and collate disparate health data sets, allowing developers to do what they do best, develop meaningful applications. A world where all this is done, protecting my privacy, private enough where the data is not resold, but not so private that I cannot share the data with meaningful parties with the click of a button.
What is truly exciting is over the past few months, I feel us reaching towards this goal with ever increasing speed and creativity. Exciting times ahead…
2) “Finding the Missing Link for Big Biomedical Data”. http://jama.jamanetwork.com/article.aspx?articleid=1875648