Sage Commons: progress for researchers and patients

• Sage Repository: Willingness to share data seems to be higher in the systems biology space than in global public health. Sage Bionetworks reported that from 107 datasets targeted, 70% were available (at least on request), but 50% of those had some barrier to usability (only partial data, lack of documentation, files corrupt, proprietary software needed); for now, 22 datasets have been curated and are available in the repository.
• Sage Commons Platform: nice demo of the Synapse tool (to be publicly available and open source by next year's congress), which will ultimately include a repository, a cloud compute component, and tools for collaboration and workflows. For any dataset, the platform will provide the data, code used (e.g. for curation), contact info for contributors like data creator and curator, and links to projects that use this dataset. Project pages in turn provide information about each step of the analysis process (incl. input, output, code and versioning). A number of potential partnerships will make sure that Synapse is not a siloed tool, but rather part of a larger network.
• Enabling Sharing: We made progress towards finalizing the Sage Commons Principles; a major emphasis in the discussion was placed on respecting the rights and interests of those that contribute data to the Commons for the purpose of advancing knowledge; this includes both the people providing samples or data about themselves and people involved in the collection and curation of the data. Other key principles will be interoperability and low barriers to access. In addition, there are concrete plans for creating legal, technical and normative tools and guidelines to implement the Commons Principles.
• Data Citation & Credit: very exciting is the launch of a new journal, Open Network Biology. Relegating the current journal article to the "role of an advertisement" (editor-in-chief Eric Schadt), the journal will provide direct access to supplementary information and underlying data and truly enable reproducible science. It will enable readers to cite and interact with models; code and raw data will be required at submission. Another project, titled SageCite, in collaboration with DataCite and myExperiment, aims to improve the citation of research data (not just the final article) and workflows.
• Engaged Public and Patient-Centered Healthcare: Communities and patient advocacy groups (like Patientslikeme, Inspire2Live, Genetic Alliance) were mentioned frequently, partly because they rely on new insights from research, but also because they do advocacy for research data and provide mechanisms to actually make data available for research. Patients will (have to?) take more responsibility in pushing for more patient-centric therapeutic care. If patients also start managing access to their own data, this will provide an additional lever to make data available for research. Organizations like Genomera, 23andme and Microsoft HealthVault are in a good place to enable individuals to take more control of their health data, and to contribute de-identified data to the research community. As Stephen Friend put it in his closing keynote: The citizen is key!

In summary, the congress showed significant progress over the past year, and was hands-on enough to provide concrete projects and activities that participants can (and should) engage in over the next year. To provide further motivation to keep working on the Commons, each participant recorded a 1-minute video with personal commitments for their contributions over the next year. Time to get to work.