12 September 2012 – Kelly LaMarco has published a Science Translational Medicine Editor’s Choice Report describing the Sage Bionetworks/DREAM Breast Cancer Prognosis Challenge that continues to welcome new participants until October 15, 2012. Winners of the Challenge will be invited to San Francisco (with their travel costs paid for by DREAM and Sage Bionetworks) to present in either the November, 2012 DREAM conference or Sage Bionetwork’s April, 2013 4th Annual Congress.
Greg Beier, Bagooba’s Chief Evangelist, has a thoughtful post on the value of sharing information where he highlights Stephen Friend and Sage Bionetworks’ efforts to encourage and facilitate the sharing of research data. He notes, “This movement is so interesting on so many levels and could find application in so many other areas where poor incentives are leading to stakeholders withholding information for private advantage.”
It is wonderful to report that Sage Bionetworks has been ranked #2 in The Scientist’s tenth international survey of best places to work in academia. The Scientist noted that in this year’s survey, researchers around the world said they valued the personal satisfaction their workplace offers above all else. Sage Bionetworks was profiled by Hayley Dunning who noted that with fewer than 30 researchers, each with a different specialty, Sage Bionetworks was an “incubator for innovation,” quoting Senior Scientist Brian Bot, who feels that weekly interactions with software engineers as well as oncologists with direct patient contact help him put “a different spin on things.”
Dr. Stephen Friend, President of Sage Bionetworks, remarked, “This unanticipated recognition for our young endeavor illustrates the increasing importance of collective biomedical research and is reflected in recent large number of outstanding researchers wanting to work here.
The survey complied over 1,000 responses from full-time life scientists working in academic and non-profit research institutions around the world. The Gladstone Institutes in San Francisco ranked first for the second year in a row. Sage Bionetworks was cited as a newcomer in the top 25 institutions that also included the Massachusetts General Hospital, Cleveland Clinic and Scripps Institute of Oceanography.
A New Model
“Sage Bionetworks does not follow traditional research organization models”, Stephen Friend noted. “We have an outstanding interdisciplinary team of experts working towards a common strategic goal rather than individual academic recognition.” Building from its computation biology roots, Sage Bionetworks is also increasingly working with patient advocates and communities to help build better models of disease.
Sage Bionetworks is focused on changing how medical researchers and citizens collaborate on large datasets to create useful models of disease with initiatives such as Synapse, an open access analysis and collaboration platform, and the DREAM breast cancer prognosis challenge that enables research community interaction.
It should be noted that Sage Bionetworks partners with a broad array of academic and commercial entities to accomplish its goals. We have been especially fortunate to have the support of the NCI’s Integrative Cancer Biology Program and the Washington Life Sciences Discovery fund for this start-up enterprise as well as ongoing partnerships with organizations such as IBM, Google, Amazon and the Fred Hutchinson Cancer Research Center.”
About The Scientist:
The Scientist has informed and entertained life science professionals around the world for over 25 years. The title provides innovative print and online coverage of the latest innovations in life science research and industry developments including trends in research, new technology, news, business and careers. We reach the leading researchers in academia and industry that are interested in maintaining a broad view of the life sciences by reading insightful articles that are current, concise, accurate and entertaining. For more information about The Scientist, visit www.the-scientist.com
The Wall Street Journal featured a story by Amy Marcus on new initiatives to help patients access their own health data and to become more active participants in medical research. It features commentaries by Sharon Terry, CEO of Genetic Alliance, Stephen Friend, President of Sage Bionetworks, and John Wilbanks, a Sage Bionetworks Director.
As described in the article, it seems ironic as well as cruel that researchers traditionally will not give research subjects’ clinical data back to them. Patients give time, information and often literally a piece of themselves to countless research projects every year with little or no expectation of a return other than helping improve healthcare. Such altruism is essential for meaningful scientific progress and yet the patients often feel alienated and disrespected.
Medical researchers have a poor track record of sharing data with their peers for fear of being scooped for a publication or diluting their chances for grants or promotions. This hoarding for personal benefit behavior exists despite the fact that public taxpayer dollars usually have supported the research and that investigators agree to share data as a condition of grant funding. Sadly the results are that such clinical data is rarely re-used, re-examined or combined with other datasets costing time and money in the hunt for better therapeutics.
Amy Marcus reviews efforts by ‘health hackers’, citizen scientists who believe that there is too much secrecy in medical research and have established new initiatives for patients to exercise their rights on the use and the sharing of their data. Projects like THAT’SMYDATA seek to engage the public as active participants in contributing clinical and molecular data to researchers as well as in assuring that the data is shared according to their wishes.
There are many points of view on these efforts and this controversy is but one facet of the changes concomitant with an increasingly informed healthcare consumer population. The Wall Street Journal article attracted over 70 comments in two days. Some physicians do not think that the public should have access to scientific data without guidance by professionals. Some scientists worry that unsophisticated citizens will not be rigorous with study protocols and might be highly biased when interpreting or communicating data. Other researchers see increasing professionalism among citizen scientists and a chance for innovation and creativity that may be lacking in the current healthcare environment.