Big Data and Open Source may be the Future of Healthcare
John Wilbanks discussed the Big Data and Open Source as the Future of Healthcare at Triple Ring Technologies (www.tripleringtech.com), in the MedTech Frontiers series. Wilbanks is the Chief Commons Officer at Sage Bionetworks and a Senior Fellow in Entrepreneurship at the Ewing Marion Kauffman Foundation.
Outcome of big data comes out in monopolies and Wilbanks suggested that we choose monopolies wisely. Opensource gives more choices. While monopolies lead to incremental improvement, we need to deal with big data in non incremental way. Monopolies also create network effects and once entrenched, it is hard to dislodge and move out of it. There has been a rise in “open” monopoly in the last 20 years. These are monopolies at the core of the open systems. An unusual side effect of these systems is an increase in the sample size of the programmers and emergence of “digital” commons. Adoption of open source software has resulted in savings of $50B to consumers. In truly open source system, no single entity maintains control of the creative commons. This opens door for truly disruptive innovation.
Building open networks in biomedical research is very challenging, said Wilbanks. Willbanks shared about sagebase, http://www.synaps.sagebase.org, a non profit collaborative compute space that allows scientists to share and analyze data together. Wilbanks is currently also running the Consent to Research (CtR) project at WeConsent.us. CtR is a patient-contributed clinical research study model in which people take the data they can gather about their own health and donate it for computational analysis. Besides taking the ethical and procedural steps to create an open, huge, mine-able database of information about health and genomics from many sources, what is also required is a legal consent form. At WeConsent.us, they are constructing a consent form that is portable and legal and would allow the use of the patient data for varied applications. Performing medical or genomic studies on humans require informed consent and careful boundaries around privacy. However, allowing open access to the researchers, to this data, that would otherwise be useless after the initial study or application, would give researchers the potential to spot patterns, that may not have been obvious, and it would open doors to possible treatments and solutions for previously unsolvable issues.