Reflections of the Medicine 2.0 Congress in Toronto, CA.
It was an exhausting 2-day conference. While Andrew and I arrived at 4am of the morning of the conference, much of the information delivered required a constant synapsing of our neuronal structures. As a result, a 13 hour sleep at the end of day 1 of the conference was required.
The conference did not focus on eScience (with the exception of the poster presentation) until friday afternoon, where a session called “Collaborative Biomedical Research, Academic/Scholarly Communication, Publishing and Peer Review” occurred. It is here where our ears perked up.
One of the lectures in this session was “OrphanData.org: Enabling Transdisciplinary Scientific Collaboration Using Web 2.0.”
The presenter, Dr. Kei Cheung defined orphan data as data that is no longer connected to other data. As librarians familiar with eScience, we know that within academic institutions exist repositories that contain data that are no longer connected to studies. Dr. Cheung stated that much of the “unconnected data” results from the loss of funding or the lack of collaboration needed to take the data to the next step. As a result of this disconnectedness, the data is often deleted from the institution’s server to make room for other items. This deletion has serious implications as the data lost/deleted could inform other studies or inform future studies. However, Dr. Cheung outlined the key characteristics of web 2.0 applications that could further allow for collaboration among biomedical researchers and for data not to be lost. These characteristics such as a rich user experience, user participation, open access, and collective intelligence and collaboration would allow for a simple and efficient exchange while maintaining the scientific process and the scientist’s interest. Unlike most social networking sites, where the person’s profile is the impetus for “friending” a person, it is the data that promotes the “friending” among researchers. Dr. Cheung called this “data driven collaboration” (which is a component to the definition of eScience) where the site focuses on transdisciplinary and interdisciplinary collaborations based on shared interest in a particular gene, disease and/or pathway. However, one of the obstacles that faces Orphandata.org is the provenance (who owns the data and tracking them down) and the metadata of the data (how best do we describe it?). Given the skills of librarians, it would seem fitting that we are the ones to examine the data and organize it to meet the needs of the research community.
One of the great comments that came out of the conference was when E-Patient Dave invoked Clay Shirky: “if we wait to first clean the data to share it. Then the data will never be shared!” eScience/Orphandata.org has the potential to impact patients on a scale similar to PatientsLikeMe, however substitute patient data for lost/about-to-be-deleted eScience data and let the patient figure out what she/he needs from this lost/unwanted data. One person’s trash is often another person’s treasure (sorry for the cliche).