network building in the Big Data Deluge
Sage Bionetworks is holding an interactive colloquium with the Hutchinson Cancer Research Center on collective approaches to analyzing the tsunami of medical research data and translate it into healthcare advances. Come find out what you need to take advantage of high performance, cloud-based computing and the development of predictive models of disease within a collaborative platform.
Presentations and Roundtable:
FHCRC – david hockenbery • soheil meshinchi • pete nelson • jim olson • riki peters • jerry radich
UW – kelly edwards
SAGE BIONETWORKS – jonathan derry • stephen friend • erich huang • lara mangravite • adam margolin
GUEST SPEAKER – eric schadt
synapse demonstrations • sage bionetworks software platform team
poster presentations • sage bionetworks scientists & engineers
Questions? contact firstname.lastname@example.org
Monday 23 January 2012 – 2 PM – 5 PM
Pelton Auditorium • Thomas Building • Fred Hutchinson Cancer Research Center • 1100 Fairview Ave. N. • Seattle WA
Download PDF of Program
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.
Stephen Friend has published a short editorial/review on the Sage Commons Congress in the new journal Science Translational Medicine. It connects Sage Bionetworks’ vision and mission with the activities of the April meeting. Free access is available on the Sage Bionetworks News page.
Nature Biotechnology continues to follow new industry trends in its July 2010 issue. Stephen Strauss contributed an article entitled, “Pharma Embraces Open Source Models” that highlights Sage’s progressive pharmaceutical partnerships.
The fledgling Direct to Consumer (DTC) genomics industry encountered a congressional tempest in Washington DC last week with the release of a highly critical GAO report and subsequent committee hearings. The report is available on line and there are several insightful commentaries from National Public Radio, Natasha Singer in The New York Times, Dan Vorhaus, Daniel MacArthur and David Ewing Duncan in Fortune.com as well as a rebuttal from 23 and me.