Applying Open Practices — Sage Bionetworks

In our series about organisations which are ‘Open by Design,’ this time we explore how Sage Bionetworks is working to enable and speed up breakthroughs in biomedical research by redefining how complex biological data is gathered, shared and used. This means challenging the traditional relationships between academic researchers, biomedical firms and ‘subjects’ to foster an ethos of data sharing. With a business model that’s dependent on shared resources and collaborative innovation, Sage Bionetworks is fundamentally ‘Open by Design.’

Alex Klepel & Gitte Jonsdatter (CIID)

Founded as a spin-out from Merck in 2009, Sage Bionetworks is a non-profit research organization that seeks to develop predictors of disease and accelerate health research by applying a large and impactful set of open practises. These allow for a global research community to share knowledge, interpret large-scale data, crowdsource hypothesis-tests and foster innovation through community challenges.

Sage relies on cloud technology, web services and consulting services to encourage and facilitate data sharing between biotech companies, researchers and research subjects. The organisation has developed three tools to support their work: Synapse, a cloud solution for sharing research data between organisations and researchers; DREAM Challenges, a crowdsourcing platform where partners can post and answer questions in biology and medicine; and Bridge, a set of web services designed to support research studies conducted via smartphone. Bridge is the engine behind Apple’s Research Kit, which made tech headlines in 2015 with the successful initial results of Sage Bionetworks’ MPower — a project to diagnose and treat Parkinson’s disease using a rich dataset gathered from thousands of iOS users.

Biomedical research is a field with a history of high investment in data-gathering studies, and a reluctance to share. In a field where being first with analysis results means everything, access to datasets is seen as a competitive advantage: products that launch before those of competitors enjoy first-mover market advantages, and for individual researchers, having study results published first improves the chances for receiving tenure and grants. This combination of business and personal career incentives has created a guarded and apprehensive culture around data that recognises only risks tied to sharing, and not the potential rewards in innovation.

Sage Bionetworks is breaking through these systemic disincentives by identifying and communicating multi-sided opportunities, co-evolving collaboration structures that demonstrate value, and tailoring services that reward commitment to working in ways that are open.

There are several layers to this strategy:

Nudging with Tiered Pricing Models: Sage Bionetworks offers platforms to clients to conduct closed or open data projects, but data sharing has associated financial rewards. Consulting services also have varied pricing levels to encourage partners to share datasets.

Setting an Example: With the DREAM Challenges on Synapse they provide a good example and begin to shift traditional mindsets in research by gifting data to the community. The platform also provides an opportunity to reach new researchers by offering a potential reward.

Building Community in Phases: The business development team has been strategic in approaching the community in stages, starting with a few leading thinkers who share the philosophy of the value in open data. At the same time Sage is working at the structural level with the organisations that determine incentives for individual researchers.

These open networks appear to form in waves. First are the people who believe in open, then the scientists and labs that are required to participate by their funders, and then you get the most powerful incentive — fear of missing out.
John Wilbanks, Chief Commons Officer — Sage Bionetworks

A valuable lesson that Sage learned early on was that “open” is not the same as “useful”: for data to be shared, it needed to be made accessible and understandable. (Sage annotated and made available $150 million of Merck research as their first open data set. But over the course of seven years only 15–20 people asked for it.) Thus, supporting consulting services that align research needs with appropriate, discernable data has been essential in realizing the benefits of making the data accessible in the first place.

The Benefits of Participation and Collaboration

Applying a combination of communications technology, new software power, and services, Sage Bionetworks plays the role of a catalyst in a powerful research community, creating the conditions in which breakthrough discoveries can occur — by unlocking the power of combined data sources which can reveal new patterns. One stellar example of what can be achieved through collaboration is what Brian Bot, Principal Scientist and Community Manager at Sage Bionetworks, described in an interview as the “Colorectal Cancer Subtyping Consortium”. By bringing together competing research teams, building trust and commonly curating their respective molecular data sets, Sage Bionetworks enabled the unusual consortium to reinterpret contradictory research results and to see more than any each team had previously seen: a consistent signal for molecular subtypes in colorectal cancer.

We are trying to change the mental models of science. The vast majority of science is focused on the tip of iceberg — the results. But not so many people think about the mental models, values processes — and if you can combine those models and processes with the emerging technical environment, it’s possible to do science better, by doing it together, even using traditional science metrics.
John Wilbanks, Chief Commons Officer — Sage Bionetworks
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