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.”
Press Release: CommonMind Consortium Launched as a Public-Private Effort to Generate and Broadly Share Molecular Data on Neuropsychiatric Disease.
Date: April 9th, 2012
Contact: Jonathan Derry, Vice-President, Sage Bionetworks
Tel: (206) 667-2101 email: info@CommonMind.org
SEATTLE, WA. Sage Bionetworks, Mount Sinai School of Medicine (MSSM), University of Pennsylvania (Penn), the National Institute of Mental Health (NIMH), and Takeda Pharmaceuticals Company Limited (TAKEDA) have launched a Public-Private Pre-Competitive Consortium to generate and analyze large-scale genomic data from human subjects with neuropsychiatric disease and to make this data and the associated analytical results broadly available to the public. This collaboration brings together disease area expertise, large scale and well curated brain sample collections, and data management and analysis expertise from the respective institutions.
As many as 450 million people worldwide are believed to be living with a mental or behavioral disorder: schizophrenia and bipolar disorder are two of the top six leading causes of years lived with disability according to the World Health Organization. The burden on the individual as well as on society is significant with estimates for the health care costs for these individuals as high as four percent GNP. This highlights a grave need for new therapies to alleviate this suffering.
Researchers from MSSM including Dr. Pamela Sklar, Dr. Joseph Buxbaum and Dr. Eric Schadt will join with Dr. Raquel Gur and Dr. Chang-Gyu Hahn from Penn to combine their extensive brain bank collections for the generation of whole genome scale RNA and DNA sequence data. Dr. Pamela Sklar, Professor of Psychiatry and Neuroscience at MSSM commented “this is an exciting opportunity for us to use the newest genomic methods to really expand our understanding of the molecular underpinnings of neuropsychiatric disease”, while Dr Raquel Gur, Professor of Psychiatry from Penn observed “this will be a great complement to some of the large-scale genetic analyses that have been carried out to date because it will give a more complete mechanistic picture”.
Dr. Jonathan Derry, Vice President of Research at Sage Bionetworks noted, “We are truly thrilled to be partnering with some of the best brain researchers to generate an unprecedented scale of molecular data that we will make broadly available as a resource to the community through our data analysis and management platform Synapse.” Dr Thomas Lehner, Chief Genomics Research Branch at NIMH added, “The NIMH is particularly excited about this partnership that will leverage resources and expertise in both the public and the private sector to accelerate research into the causes and treatments of major mental illness”.
TAKEDA has provided seed funding for the effort that will look to expand in the future. The CommonMind Consortium is committed to generating an open resource for the community and invites others with common goals to contact us at info@CommonMind.org.
Sage Bionetworks is offering 10 travel awards to the 2012 Commons Congress in San Francisco to grad students, postdocs and early stage investigators. Details and an on line application form are available on the Congress website. This is a fantastic opportunity for young clinicians, biologists, software engineers and computational scientists who are passionate about open science and data-intensive science to participate and contribute.
Application deadline is February 29, so act quickly. Please forward this information on to outstanding candidates!
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
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.
One of Sage Bionetworks’ primary activities is the creation of a computational platform, called Synapse, that will facilitate open, reproducible data-driven science and support the reusability of information by ontology-based services and applications directed at scientific researchers and data curators. Dr. Michael Kellen, Director of Technology at Sage Bionetworks provided a demonstration of an alpha version of the Synapse platform to the National Center for Biomedical Ontology and discussed its application to clinical science. A recorded webinar of his presentation and the discussions is available on line: http://www.bioontology.org/Sage-Bionetworks-Synapse-Project
One important outcome from the April Commons Congress in San Francisco was the Commons Principles. This charter for open, contributor-driven genomic research and progressive community engagement was developed to define behaviors and processes for those working in the Commons computational environment as well as for researchers interested in cooperative, data-intensive science and patient advocacy.
The Principles are an aspirational guide rather than a detailed roadmap (which will come from the activities of Community of Interest D over the next year.) This vision for the Commons is described in six principles emphasizing the; healthcare focus, open platform, respect for all stakeholders, proper attribution, transparent standards, and absence of IP barriers.
Starting with a draft prepared by Robert Cook-Deegan, the Principles were revised and approved by Congress attendees and after further revision and condensation the Principles were approved by the Sage Bionetworks Board of Directors. A public endorsement has now begun and we invite you to raise your voice and support for open science and the Sage Bionetworks Commons concept by adding your name or comments to the Principles at http://sagebase.org/WP/com.
It is a pleasure to note that Stephen Friend, Sage Bionetworks President and co-Founder, has been selected as an Ashoka Fellow. The full press release can be downloaded from this link.
What makes this special is that while the worldwide Ashoka Fellow community helps to recognize, support and connect over 2,700 innovators in areas such as human rights, the environment and social services, there are relatively few medical researchers. Stephen Friend’s Fellowship highlights his vision and effort in transforming the social fabric of how medical science is conducted as well as Sage Bionetworks’ efforts to build and share effective computational models of disease. The Fellowship is a reminder that the cultural challenges of engaging the public and active data sharing are very real and continued social entrepreneurship is required.