News Blog

Thank you, Doctor

Peter Kapitein, an unstoppable Dutch cancer patient advocate who leads Inspire2Live, has written a wonderful article illustrating the need and importance of patient-doctor communication. As a cancer survivor he advocates a strong partnership between patients, their supporters and physicians. Acknowledging the need for patients to be active participants, he describes the role doctors should play:

“There is no denying that informing a patient diagnosed with cancer of his situation and the possible treatment is among a medical doctor’s less enviable duties. But no matter how difficult, a duty it is. So, how best to go about it? Well, a good start is, as I once heard a young physician put it, to “look into the patient’s eyes to see if your words are being understood. If they tell the opposite, then start explaining again, using different words.” After each explanation, interview your patient to see if he has understood so well that he will be able to inform his dear ones back home. Meanwhile, try not to think of the other patients in the waiting room. They will just have to wait a bit longer. And they will not mind once they know you need more time as you are more focussed on the patient than on the disease.

A doctor must endeavour to be as explicit as possible when informing a patient of his condition, no matter how unfavourable this information is. His chance of surviving or the need to undergo a severe treatment is no information any patient should be left in the dark about. Moreover, a patient has a right to know what to expect in order to be able to prepare for a treatment or the few months left him. But it is not just the doctor who is responsible for transparency towards his patient. The latter, too, has a duty to get to the bottom of his situation. And if he is unable to do so himself, he should bring along someone close to him to ask the relevant questions.”

A PDF of the full article is available for download.

Health Hackers

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.

Stay tuned….

Synapse Demonstration Webinar on line

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

Commons Principles

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.

Out-of-the-box Doing

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.

New International Neurobiology Partnerships

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.

Huntington’s Disease

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.”

30 March 2011 Press release

S	M	T	W	T	F	S
« Jan
			1	2	3	4
5	6	7	8	9	10	11
12	13	14	15	16	17	18
19	20	21	22	23	24	25
26	27	28	29

network building in the Big Data Deluge

Monday 23 January 2012 – 2 PM – 5 PM