Connections Matter


There is a developing conversation around “Science 2.0,” where it is argued that the application of social networking platforms that have proven so successful in other contexts can be leveraged to enable and improve scientific collaboration. Tools like blogs, wikis and forums as well as the scientific equivalent of Facebook/MySpace are already being used by members of the scientific community, sometimes with large and enthusiastic communities of participants. The active participation in sites like and Epernicus illustrates that scientists as a group have an interest in social networking, and are willing to make use of such infrastructure when it supports their business/science goals.


It is not enough, though, to build instances of existing tools and expect that the scientific users will flock to them and immediately figure out ways to use the infrastructure to support their work. What is constructed must fit into useful paradigms of scientific activity, and tools must truly reflect the activities and work process of the scientists who would use them. This approach must go beyond the “electronic lab notebook” that has been the dominant paradigm for collaborative systems in science. It requires a close examination of how scientists actually work today, and a reasoned approach to how that work will change in the future. By mindful watching of scientists at work, listening to their concerns and interests, and having a willingness to push the envelope on the existing tools, it will be possible to create novel systems that go beyond simply mimicking the existing processes. It will also be necessary to engage scientists at all levels. Although it is tempting to focus solely on the senior-most researchers, it will be critical to engage younger scientists and those engaged in the more mundane technical activities to create real and lasting value in tools that support research.


I have been involved as a member of the Data Portability Project Healthcare Task Force, and have had the opportunity to see how the standardized and interoperable exchange of data can enable, enhance and support the needs of a widespread scientific community. The Data Portability Project defines itself as “the option to use your personal data between trusted applications and vendors.”  This represents a generalization of what we have been talking about in the BIG Health Consortium™ – namely that providing our participants, whether they are patients, clinical researchers, basic scientists, or physicians the ability to safely and securely share data with their caregivers, colleagues and collaborators is critical in order to move to the next level of translational research and to realize the promise of personalized medicine. Obviously, concerns about privacy, security and safety are important in our health care and health research space, but equally important will be providing a means for those engaged in these activities to access (and control access to) the electronic component of their information. Beyond simply supporting the secure exchange of data, the ability to effectively participate in new and more integrated ways as a part of the scientific research community as a whole can give stakeholders a sense of belonging to the process, which can enable entirely new communities that transcend the traditional divisions between patients, physicians and researchers.   


Our community needs to engage in the development of meaningful new methods for communication and collaboration around our research, and participate in activities like the Data Portability project in order to ensure that the ”voice” of basic science research and translational medicine does not get lost in the broader and more general conversations about storing, accessing and making use of health data. It is my fond hope that the BIG Health Consortium™ and related efforts like caBIG®® will provide us with a community base for these discussions and thus ensure the best possible outcome for our research community, and for the patients whom we ultimately serve.


-Mark Adams, BIG Health Futurist

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