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.”
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.
Thea Norman, Aled Edwards, Chas Bountra, and Stephen Friend have published a commentary on the need to establish new models for drug development and the workshop they organized in February to explore alternatives paradigms. The Science Translational Medicine commentary reviews the context and the the opportunity for a new public-private partnership establishing a pre-competitive archipelago of stakeholders to achieve proof of clinical mechanism (POCM) for selected disease targets using lead compounds. Further details on the Arch2POCM initiative are available on our web site.
The summit started by reviewing the ever-increasing costs and time span of drug development, particularly in light of the 90% attrition rate that the so-called pioneer targets experience during phase II trials. The participants discussed partnerships models and the benefits of an open precompetitive environment where academic and commercial partner sharing is not encumbered by traditional intellectual property. The outcome was a commitment to the selection of three therapeutic areas on which to focus and the development of a business plan grounded on disease-specific cost models and ARCH2POCM’s strategic objective at an April meeting in San Francisco.
Sage Bionetworks has built a strong program in neuroscience with partnerships to build advanced computational models of disease with CHDI Foundation and Takeda Pharmaceutical Company. The analyses and the resulting models will be deposited in the Sage Bionetworks repository and will be valuable public resources available to all interested researchers.
CHDI Foundation is continuing to support Sage Bionetworks in a project to apply advanced computational modeling to the discovery and development of biomarkers and therapies for Huntington’s disease (HD). Initially, Sage Bionetworks and CHDI will work with Massachusetts General Hospital colleagues to conduct a worldwide inventory of HD tissues available for research purposes.
“Even though HD is caused by mutations in a single gene, there are unexplained variations in disease onset and progression,” explained Jonathan Derry PhD, Project Leader and Vice President of Research at Sage Bionetworks. ”We believe that genomic network analysis that uses both genetic and phenotypic data will help identify the factors underlying this complexity and provide insights into new models and therapies for the disease.” Robi Blumenstein, President of CHDI Management said, “We are particularly excited to bring HD to Sage Bionetworks’ open-access infrastructure. This shared platform will allow investigators to freely build and compare their network models using Sage Bionetworks’ sophisticated tools, to the benefit of the entire HD research community.”
Schizophrenia and other CNS Diseases
Takeda Pharmaceutical Company and Sage Bionetworks have began a four-year research alliance focusing on therapeutic targets for central nervous system (CNS) disease. Using its integrated genomics methods, Sage Bionetworks scientists will build predictive computational models and identify key regulatory genes and predictive biomarkers in patients with CNS diseases including schizophrenia. Scientists at the two companies will then collaborate to discover and prioritize the targets holding the greatest potential for molecular intervention. Under the terms of the agreement, Takeda will provide more than $3.6 million over four years in research funding and fees.
“Sage Bionetworks’ leading-edge technology and world-wide reach offers the potential for Takeda to understand currently unknown disease mechanisms. This represents a key strategy for meeting Takeda’s challenge for innovation,” said Dr. Paul Chapman, General Manager, Head of Pharmaceutical Research Division of Takeda Pharmaceutical Company Limited. Dr. Stephen Friend, President of Sage Bionetworks noted, “We believe this project, which is our first in central nervous system area, creates an opportunity for new therapeutic insights.”
Sage Bionetworks and AstraZeneca have begun an exciting cancer collaboration using advanced computational modeling. The goal is to develop a deeper understanding of cancer to help better match patients with appropriate treatments and might one day lead to new cancer therapeutics.
Cancer is a major cause of mortality globally; accounting for 7.4 million (or 13%) of all deaths in 2004. The World Health Organization estimates the incidence of cancer to continue rising to reach an estimated 9.2 million deaths in 2015, driving the critical need for novel therapies to reach patients quickly and efficiently as well as better ways to match patients with treatments.
The partnership will combine Sage Bionetworks’ expertise in computer models of disease genetics with AstraZeneca’s extensive knowledge and expertise of oncology including access to data on AstraZeneca’s compounds. It will focus on investigating regulatory pathways among different cancers using large coherent cancer genomic datasets and predictive disease models developed at Sage Bionetworks. This will potentially provide data-driven rationales for prioritizing therapeutic targets for developing new insights to improve cancer treatments, as well as potentially helping to identify cancer patient subpopulations that will most likely benefit from such treatments. Dr. Jonathan Derry, Vice President of Research at Sage Bionetworks noted, “This is an exciting opportunity to combine what we have learned about complex genetic networks with the outstanding resources and scientists at AstraZeneca.”
Dr. Susan Galbraith, Vice President and Head of Oncology Innovative Medicines Unit at AstraZeneca said: “We are looking forward to collaborating with Sage Bionetworks to build realistic, predictive models of cancers to expand our current understanding of these diseases and potentially harness that knowledge into new target identification, portfolio positioning and patient selection all of which we hope will lead to new treatment options for patients.”
“Everyone truly wins in this project,” noted Dr. Stephen Friend, President of Sage Bionetworks. “Sage Bionetworks gets to work with an industry innovator and the resultant computational models will be placed in our public repository and available to all researchers following the completion of the project. Most importantly, we hope patients will gain better drugs.”
The preliminary program for the 2011 Sage Bionetworks Commons Congress has been posted on the Congress website.
2011 Congress Overview
Part 1: Achievements of the past year
There will be a recap of the 2010 Congress outcomes, an introduction to new projects that have emerged in that time, and a demonstration that the efforts of the Commons over the past year have paid off. The Federation, the Project Working Groups, and independent projects like SageCite will be featured. Sage Bionetworks will present its own internal development work that complements the existing public-facing work.
Part 2: Engagement of Communities of Practice
The second part of the Congress will engage the audience directly in one of five Sage Bionetworks communities of practice. Each attendee will have been asked in advance to self-attribute a description and submit a short abstract detailing work done on either Sage Bionetworks activities, or Sage Bionetworks-related activities. There will be opportunities for hard science engagement, construction of advocacy materials and messages, policy discussions and research presentations, briefings on laboratory progress and external efforts, and some of the events more common to scientific events like poster sessions and journal club. At the end of the session attendees will be able to see themselves and their work integrating into the Congress and the Sage Bionetworks work, and have created new connections with other attendees.
Part 3 Commitments for 2011
The final part of the Congress will draw together the strands of day 1 and to connect them to the impact we want to have at Sage Bionetworks. There will be reports from the five communities of practice, and a session where we will ask all attendees to ask themselves what they want to do, or will do, as part of the Sage Bionetworks communities of practice after the Congress. Each attendee will be given one minute to speak their commitment to a camera, and a random selection of attendee commitments will scroll during lunch. There will also be a detailed report on the large “game changer” projects at Sage Bionetworks that have to date been under wraps while in development as well as a closing keynote by Stephen Friend.
At the conclusion of the Congress attendees will understand how their own work in Sage Bionetworks connects to the greater movement of change in the way we relate to biology and how biology relates to therapy development. Participants will be challenged to think of how their own work from the previous day might lead to more sharing, better resource allocation, and more progress of the overall Sage Bionetworks effort and help bind the participants into a set of communities ready to do active work.
For information on speakers and further details and updates go to the 2011 Congress Agenda Page.
Preparations are underway for the next Sage Bionetworks Congress which will be held April 15-16, 2011 in San Francisco. Our theme for the coming year is the move towards personalized, patient-driven medicine, and the role that Sage Bionetworks can play in that transition. There will be reports from the Sage Bionetworks Federation, Working Groups, and exciting projects like SageCite, as well as hackathons, poster sessions, and evening activities.
The Congress Announcement page contains information on the “attendance criteria”; this year we are asking potential attendees to indicate how they are working to build a commons, whether in data, technology, science, policy, advocacy or more. We really want this meeting to be one in which everyone has a stake, and has worked to make a more open approach to science a reality. We expect significant demand for about 250 seats so if you’d like to attend please register your interest soon.