Tag Archive for NIH

User Roles and Governance

2013-06-09 Role vs Governance Diagram for NIH Citizen Engagement Think Tank

One of the areas of discussion at the NIH Citizen Science Engagement Think Tank meeting last month was how to categorize the roles (and thus rules of engagement) for citizen scientists. There was a continuous pressure to call individuals who “donate” their medical data to scientific research patients. Let me start by saying that I find that unacceptable — aside from the fact that every human being on Earth has been or will be a patient at some point in their lives; the label patient implies a lower level on the hierarchy than doctor or scientist. The whole point of citizen science initiative is to break down the barriers to entry — we are ALL scientists! Being a scientist is not measured by the number of years in school or diplomas on the wall. It is the willingness to do science that is key. Thus we can all be scientists. With that said, what follows is the discussion on group dynamics — how do people work in groups and how we can support productive scientific endeavors through good design and social engineering. Think Different Collective Groups of people are not made up of homogeneous people — we are all idiosyncratically…

The WHY Question

The “Why” questions are important part of design: Why are we building this product? Why would users want it? Why us? Why now? Why this technology? The value of any question asked during the design process is in how the answer to that question helps advance the project; or help the design group bond; or reveal a significant insight into the problem that the group is trying to solve; or help clarify the use scenario; etc. All such questions are about moving the project forward. But it is easy to get sidetracked here, and I saw just that at the NIH biomedical research design brainstorming meeting. Before I proceed, let me describe a bit of background research and give a concrete example when the wrong answer to the Why question jeopardizes the design solution. About ten years ago now, we were asked to design a set education materials for the San Francisco Zoo. The problem was lack of structure for school visits. San Francisco public schools allow all elementary school children to visit the city zoo once a year. That’s a lot of school children…and a lot of visits per kid. But do these students learn anything during these visits?…

Build It and They Will Come…NOT!

NEXT logo

There’s a common misconception — a folksy wisdom, a p-prim, if you will — that in our many years of product design led many entrepreneurs astray: Build it and they will come! Oh, if only it was so… While this is a wonderfully optimistic world-view, it just doesn’t work out that way in real world. So rather than just say it isn’t so, I will give a few examples where I was personally involved either in the design of the product or the workings of the company. Please keep in mind that all of these examples were EXTREMELY well-funded, had a lot of design resources, and ALL believed that they were changing the world for the better. NEXT We all remember NEXT, right? If not, let me jug your memory… After leaving (or being forced out of Apple), Steve Jobs started NEXT — a computer hardware company to rival Apple. Even with Jobs’ charisma, talent, deep financial resources, access to the best minds in the business… he couldn’t make this work. Some say that NEXT is now part of Mac DNA, but it still stands that as a company is was a failure… Steve built it, and no one ever…

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…

Long-term Strategy versus Fast Success

Divergent Road with low hanging fruit

NIH think tank on the future of citizen participation in biomedical research came to a closure on Friday night, and I had many hours in the airport and plane to think about all that was discussed. In the next few days, rather than writing a longish piece of my impressions of the meeting, I hope to get to each of the items that I feel I didn’t get a chance to fully explore while in Washington D.C. in a series of small posts. Low Hanging Fruit There is a strong temptation in any project to achieve success early (and often). The expression Low Hanging Fruit refers to relatively easy to accomplish tasks. But in the desire to get things done, it is easy to lose track of the overarching strategy — the main purpose of the enterprise. By chasing the Low Hanging Fruit, it is easy to get distracted and end up on the wrong path. Two Different Roads We’ve discussed two visions for the future: more of the same and a radical cultural shift. We visualized the first path as “turning the knob to 11” (aka Spinal Tap). More of the same (but with higher intensity) has many tempting…