Tag Archive for biomedical research

Commons Assembly: Bridging Health Divides

Commons Topper

Last week was the week the Sage Event—a conference of Sagers (individuals who have been Sage Bionetworks supporters over the years and some new comers) that I have been organizing for the last 5 months. At its core, the idea for this event was the provide an opportunity for Sage Scholars and Sage Mentors to come together and share their projects. These Sagers are incredible people! Below are some of my thinking as it emerged from listening to their presentations. And when the videos become available, I will link to those as well in another post. There were four general themes for the day: 1. ICT and Health; 2. Delivering Health to Hard-to-serve Populations; 3. Rare/Orphan Diseases; and 4. Health, Education, Patient Data, and Advocacy. But the ideas shared at the event were not to be constrained! So allow me to present a very different non-technical view as a way of summarizing ideas that floated during the day. First, allow me to break the science investigations into two parts: • First based on DATA Science—analysis of information available about patients and the environment as coded in medical records or submitted via apps or gathered via sensors. In other words, scientific…

2015 Paris Sage Assembly Summary Slides

Institut Pasteur Sage Illustration

In 2015, the first Sage Assembly was held at the Institute Pasteur in Paris: http://sagebase.org/paris-assembly-2015-april/ Below are my slides from the last day’s concluding remarks. 1. Let me start by saying what an amazing experience the last few days have been. Interesting ideas, great people, innovative solutions all came together here, in Paris. Thank you institute of Pasture for being such wonderful hosts. 2. And of course none of this would have happened if not for one man, one American in Paris, Steven Friend. Thank you for working so hard to change the world, Steven! 3. And all of us! Don’t we group well? But there are still some obvious empty pins on this map. The World-wide Sage Community has room to grow! So let me come straight to my topic — how do we create systems that help us change the world? How do we design and foster supports , scaffolds that make open data initiatives possible? Well, I believe we have to start by understanding the people and communities in which they work. And we need to think about how change propagates… 4. Change can be sparked by a single individual and then move all the way up…

Intended and Unintended Consequences of Social Design

Baby Fresh Air Cage for High-rise Apartment Buildings

Nudging is a form of social engineering — a way of designing system constraints and support structures to encourage the majority of people to behave in accordance with your plan. Here’s a famous-in-my-classroom example of nudging: Opt-in versus Opt-out Consent Solutions There are many examples of such social engineering. During our breakout groups at the NIH think tank on the future of citizen participation in biomedical research, I raised the difference between opt-in versus opt-out option results for organ donation. In some countries in Europe, citizens have to opt-out from donating their organs in a case of a tragic accident — they have to do something to NOT donate their organs. As the result in Austria — which has an opt-out system — the donation rate is 99.98%! While in Germany — which has an opt-in system — only 12% will their organs for transplants. This is a huge difference in consent between very similar populations of people. Unintended Consequences of Social Design Not all social engineering efforts go as well as opt-in/opt-out organ donation systems. To reduce pollution for the 2008 Summer Olympic Games in Beijing, the Chinese government established the even/odd license plate law: cars with even license…