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.”
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.”
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 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.
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.
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.
Sage Bionetworks has begun a Tumblr. blog as a place to share a range of science and genomics-related news, videos, links and documents. It is designed as an FYI/ICYMI (for your information/in case you missed it) resource for scientists and non-scientists alike hence the n.b (nota bene) suffix.
Sage Bionetworks n.b. will include a wide variety of topics such as advanced genomics, open science and health care policy. It will provide an opportunity to expand on @sagebio tweets and will augment postings and discussions on the Sage Bionetworks Blog. Suggestions and comments on interesting and useful news items and references are always welcome (firstname.lastname@example.org). You can visit the Sage Bionetworks Tumblr. page at http://sagebio.tumblr.com/. Anyone can access the Sage Bionetworks n.b. site and users who have, or register for, Tumblr. accounts can leave comments.