This article was written with Ellen M. Martin.
Most healthcare clinicians don’t often think about donating or sharing data. Yet, after hearing Stephen Friend of Sage Bionetworks talk about involving citizens and patients in the field of genetic research at StrataRx 2012, I was curious to learn more.
McKinsey points out the 300 billion dollars in potential savings from using open data in healthcare, while a recent IBM Institute of Business Value study showed the need for corporate data collaboration.
Also, during my own research for Big Data in Healthcare: Hype and Hope, the resounding request from all the participants I interviewed was to “find more data streams to analyze.”
With this in mind, I arrived at this February’s Strata conference wondering what I could extrapolate from other more sophisticated data users to healthcare.
In Strata’s Data as a business track, I gathered some interesting data points about Open data in health.
Jen van der Meer describes how “open data as an externality” can create positive overall good and become a “movement” expanding from government to industry. This makes sense, given that each day doctor’s and patients make treatment decisions based upon a small portion of the available data. A more complete picture could improve research and clinical decisions.
In contrast, van der Meer warned that “closed data is a negative externality” that leads to “slower science, fewer medical breakthroughs,” and “more money chasing programs that do not work” even if “we do not know it yet.”
Tidepool is building an open-source, device-agnostic, secure data platform for type 1 diabetes data. Importantly, the platform will work on all the diabetes devices, such as insulin pumps and blood glucose monitors, in the marketplace. This is a first-of-its-kind holistic approach, where patients own their data: they are given a simple visual tool that shows them what to do and empowers them to respond appropriately to the data they generate. For doctors, it will enable them to see patterns in the data.
Another example is Yale University’s Open Data Access Project (YODA)’s recent collaboration with Johnson and Johnson to share data. The program will start with the release of pharmaceutical trial data, followed later by data from clinical trials of medical devices and consumer products.
In an interview after Strata, Ms. van der Meer said, “There is no one walking around saying they need open data, for commercial reasons, but I am optimistic. Right now most of the IT efforts are block and tackle. Once we shift to an ACO model, more of the industry will see the need to share data.” She suggests we do three things now, “Civically hack, publically source, and start an open data company.”
Another case study was presented by Socrata, which provides government platforms for Medicare and CMS. Beth Blauer, who now works at Socrata, was their customer when she worked for the State of Maryland on a drive to eliminate childhood hunger by 2020. In order to better understand the problem, they had to first aggregate data sets across multiple government databases and convene multiple stakeholders. Examples of their solutions demonstrate the power of creativity to use data in new and different ways, include moving breakfast into the classroom, so as to not embarrass those who needed help, and using food trucks to deliver food during summer vacation.
Interestingly, cities are becoming more open to sharing their data. The City of Palo Alto, for instance, is using data on building permits to speed up the inspection process and the overall lag time in the building process. “Collaboration starts with open data, standardize, collaborate on it. Real work starts to use the data in ways that are useful,” said Peter Pirnejad, the Director of Development Services for the City of Palo Alto.
With discussions of data science moving to data engineering (making the data useful), I am still wondering why marketing is not yet on board and why the boardroom has not caught up in understanding how to use data.
Similarly, starting mostly in areas outside of healthcare, Datakind is a new way for data scientists to give back. Sadly, there were not very many healthcare examples.
The presentation by Geoffrey Moore (writer of Crossing the Chasm), did not even have healthcare on his list. When asked he responded, “Perhaps genomics has crossed the chasm, but the rest of healthcare has not yet begun.”
Maybe the results of the Robert Wood Johnson Foundation data sharing survey will give us a clue as to what the healthcare folks are thinking. Results are expected in March of this year.
Do you think that healthcare data sharing will catch on in the next 2, 5, or 7 years?