WEBVTT

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Hi, I'm Paul Vesure, and together with my colleague Jenna Petnar,

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we are speaking today with Suzanne M.

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Fitzpatrick about how collaborations are built and maintained between a private

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philanthropic foundation and a scientific community.

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Trained in biochemistry and neurology, Suzanne is the president of the James

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S. MacDonald Foundation. So, Suzanne, welcome.

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Great that you could join us. and to kick it off, could you maybe give us a

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short description of your trajectory through life and your career that brought

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you to the point where you are now?

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Oh, my heavens. That's become a bit of a mythology, but I will go ahead.

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Well, you started with heaven.

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So, I mean, like many people who work for private funders of academic research,

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I started life as an academic researcher.

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And so I trained as a biochemist and biophysicist at Cornell Medical College

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and then at Yale University.

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And during that time, and this is going to actually sound a little weird,

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but during that time, I worked in a lab that was based on using NMR spectroscopy

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or what they would call MR spectroscopy now.

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And And so it's, you know, big instrument science, you get a limited amount of time on it.

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And so when you're not scheduled for time on the instrument,

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you either commit with the other people who are in the lab who do have their

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time on the instrument or you look for other things to do.

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And so I wound up, you know, recording science textbooks for the blind and working

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with a local high school that was trying to improve their science education.

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And I became really interested in these areas where science sort of moves into the public.

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What happens when we take science out of the lab and really try to integrate it?

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I can tell you reading science textbooks for blind students was an enormous

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insight because it also reinforced for me how much we rely on visual representations of data, images,

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and what do you do when you can't see those, right?

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How do you describe so much of what we take for granted in science?

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So the whole communication of science became very interesting to me.

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And I realized that, you know, to continue on my path of doing academic bench

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research was not really what I wanted to do.

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I wanted to take science more out into the world.

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And so that's really what motivated me to move into not-for-profit administration.

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But I haven't really moved very, I mean, I haven't very moved very much because

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I've been at the James S. McDonnell Foundation for 28 years.

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So the good thing is it's not been the same foundation. It has evolved a lot

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over that time period, which actually has made it a very rewarding and stimulating place to work.

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So what are the objectives of the foundation and how did it change?

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So the foundation, when I joined it, was primarily supporting,

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well, first of all, it wasn't actually running its own programs in-house.

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So it would outsource, it would come up with a programmatic focus that it wanted to fund.

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But then the actual management of the program, so the getting of the grants

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and the making of the grant decisions,

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was kind of outsourced to an academic scientist who would do this from their

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institution to some extent.

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And the recommendations would come back to the foundation's board of directors,

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and they would make their final funding decisions.

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So when I joined the foundation, it was because the foundation wanted to move

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that aspect of its work in-house.

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So we wanted to take more of an active role in shaping the programs,

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deciding what areas we were going to be funding, how we were going to manage

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these competitions, and bringing our grantees together.

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So actually in creating a community to some extent, rather than just individual

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funders who happen to have support by the foundation.

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So that community aspect that bringing people together I think really speaks

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to the issue that we're talking about which is collaboration because many of

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the areas that we were trying to fund and this is.

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This is actually sort of a philosophical route that runs through private funders of research,

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is that you're often looking for these either niche areas, so an area that might

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have been overlooked by the larger,

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more governmental funders, or you are looking for emerging areas of research

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that often occur at the edges of fields or where several fields are kind of

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reaching out to each other.

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And we've often called this the informal college, right? There is no identified academic discipline.

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There is no, there isn't as of yet societies and journals and this identity.

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But you can see that there are people who want to move, you know, into this area.

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So one of our early signature programs was supporting the area of what is now

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cognitive neuroscience, right?

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So people from cognitive science and cognitive psychology who are working with

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neuroscientists and linguists and philosophers.

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And so by its very nature, the field requires the integration of knowledge from

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across different disciplines.

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And you can only do that through collaboration.

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So we would often begin to fund team-based research or center-based research

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or, you know, projects where people were coming together.

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This was still, we primarily still

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did this through the more traditional investigator-initiated research,

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but it really led us to think about whether we shouldn't be funding these kind

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of collaborative activities explicitly.

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Right?

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And so that's where we began to also make this evolution for ourselves of saying,

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how could we help identify where these areas are and what kind of skills and

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expertise and knowledge base need to come around together around them?

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Because these are questions that will not be answered by anyone discipline alone. Right.

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So that's that's really how we've been evolving. And so, you know,

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as knowledge moves and as other funders come into fields, you're constantly

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then creeping along this edge yourself,

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you know, trying to stay on this kind of on this kind of edge at this at the

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edge of this work. Right.

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So now you mentioned that strategically, you therefore really wanted to enhance

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collaboration between certain researchers or disciplines.

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So then what do you actually exactly mean with that? How would you define collaboration?

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So this is interesting because I've been thinking about this quite a bit lately.

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So one, I think what's funny is there's absolutely nothing in science that is

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not collaborative, right?

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I mean, even though we have this image of the lone wolf genius and the person

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working in their garage.

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And I mean, in reality, all of science is collaborative because we are always

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building on the work that has come before us.

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So I would say that that's a form of implicit collaboration,

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that we use knowledge that has been generated by others, we contribute to it,

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and we hope that others will use our knowledge.

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So that itself is kind of an implicit collaborative process.

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And I think we don't talk about this enough in science.

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And I think it's even become something that recently is really falling by the

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wayside as people, you know, have to like now brand and market themselves, right?

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And you have to have your idea. And this has to be your thing.

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And this has to be, you know, your original contribution, which I think is,

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you know, I think it's true. People do generate original scholarship,

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but it's not without the context of all the other work that's going on in the field around you.

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What's interesting is that I was looking for a definition, at least let's say

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the working definition that you would use when you look at this complex process

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of scientific collaboration.

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So what would you look for? What would be the features? How would you use those

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features and so on? What is it?

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So one of the things that we would look for particularly is a question where

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you really do need to bring knowledge from different disciplines together.

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So I like the definition of, let's say, synergy that information science uses, right?

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That it means that you have to combine knowledge or information from different

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sources, right, from multiple sources.

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So that, I think, is the idea. So maybe the best thing would be to give you

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an example of one of the collaborative ideas that we funded.

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So Williams syndrome, very well-known syndrome in the neurosciences,

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a genetic deletion. We know it very well.

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It's been characterized very highly at the genetic level.

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Right. How does it act? So how does that genetic?

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Defect actually wind up leading to the syndrome, right?

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How does it affect the development of the nervous system?

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How does it affect the structure of the nervous system? How does that affect

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cognitive aspects of what's going on?

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And then how does it ultimately lead to the phenotype and the behavior of individuals

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who have been diagnosed with Williams syndrome?

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This is not a question that any one field can answer.

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The geneticist will tell you about the genetics of it. The structural MR person

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will tell you what the brain structure might look like.

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The functional imager will do some tasks and show you the pictures comparing

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Williams syndrome with normal typically development children.

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And then you will have some phenotypic description or some behavioral description

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that often can be quite unrelated related to these other issues, right?

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So the only way that you could build an integrated understanding of what actually

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is Williams syndrome is by bringing people who are interested in this problem,

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but working at it from very different perspectives and using very different

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tools to come together and say, how do we develop a shared understanding of this?

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I think that's the important part what is it that we all want to know and what

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is it that we're trying to understand.

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That we can only do that if we

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agree to work together and share our knowledge and build a common understanding

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so those are the kinds of questions we have often looked for and and then you

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have to look for the kind of people who are willing to do that right who really

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want to build a shared understanding.

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So I know that you're trying to push me on this question, but I think what's

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important is to step through this idea about what do we mean by collaboration, right?

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So I talked about the implicit collaboration.

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This is explicit collaboration, right? These are people who are coming together

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for a particular reason,

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and they're already very busy people, And they're going to take on more work

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because it really matters to them that they have an understanding that.

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Bridges across from their disciplines.

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So that's one example of a place.

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And what you'd hope and what you find out is actually by constraining each level

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of analysis by the levels above and below it, people really have to also sharpen

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what they think is their knowledge.

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So, I mean, going back to Williams syndrome, you might have,

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people might be familiar with it as being described as the cocktail party syndrome.

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That individuals with Williams syndrome are supposed to be very loquacious.

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They will come up to you and they will talk and they will make all kinds of,

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you know, and they're supposed to be highly social.

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But actually, if you do a very good linguistic analysis of their verbal output,

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it's really pretty impoverished.

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And so this idea that they had this preserved communication and this preserved

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language ability was actually not true. It had become a cartoon of the syndrome to some extent.

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Only by having people from outside of that level of analysis,

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people who are understanding at the genetic level and trying to understand at

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the neural level, who would push on this and say, you need to help me to understand

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what you mean by this preserved communication,

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of preserved cognition.

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We're going to need a more careful way of thinking about this.

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So I think it's that willingness to also put your work under a microscope a

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little bit and let others critically examine it in that spirit,

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because on the other side of this,

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it's going to be better and it's going to lead to more impressive science.

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So, Susan, I wonder if I might jump in and ask you to go back.

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You mentioned earlier about the formation of these communities.

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Could you tell us a little bit more about what happens at those meetings?

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What does this collaboration process feel like between these scientists when they meet up?

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Yeah. So, so it's, it's interesting because there are some times where some

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of these people might know each other and other times not, or some people may

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know some people who are part of the group and not all.

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So one of the things that we all, that, that I think is important is you have

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to start with a social activity.

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I mean, you have to start with dinner or reception or something,

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because you have to break bread.

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I mean, you have to form the fact that we are a group of people who are coming together for a purpose.

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I have found actually that people who skip the opening night kind of dinner

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or reception or exchange and just arrive and try to drop in in the morning,

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never get really integrated into the group.

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I mean, they always, you know, they, they sort of sit outside of it a little bit.

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They get gradually pulled in, but their first two days are fairly awkward because

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they were not there from the beginning.

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So I think that making these decisions.

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Social activities non-optional is actually very important. But in the beginning,

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they're uncomfortable.

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People come in and they're looking around and they want to know who else is

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there, and they want to know, you know, what this is, you know,

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there's a certain, you know, concern to some extent, right?

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Particularly if you've asked them not to do their traditional academic thing

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of giving their talk of, here's who I am and here's what I do.

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You know, if you push them beyond

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that, I mean, you can see that there's a certain amount of nervousness.

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And it's not until you really can begin to develop this trust.

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I think the trust component is really important. And that's often a role that

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the foundation plays is to some extent, we've asked you to come and be part of this group as a guest.

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So there's a hospitality component to this.

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And I don't mean just in serving, you know, canopies and a beverage,

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but I mean, there's a sense that we've got your back on this, right?

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That you are not going to be embarrassed. You are not going to be made to feel uncomfortable.

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We're not going to waste your time. this is something

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that you are here because we know

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you care about this and this is an issue that you really

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want to contribute to and that everyone else who's in

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this room has that same intention right so there's there's that kind of um helping

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to build trust then there's the then there's the you know the gradually getting

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to know one another and then there's always the moment where you know whether

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it's going to work or not.

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And that's when somebody will finally say, you know, I've been listening to

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these talks for two days and I don't understand what you're talking about.

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You're using this phrase that to me means this, but I realize you're using it

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in a completely different way and I don't understand it.

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And that's when you know this is actually going to work, that people are now

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willing to step outside of what they know and begin to look at it as, what don't we know?

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You know, that's what's really, that's really the important part that we're

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going to find something new here by working together.

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And it's always, it's always magical, actually.

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You know, it's always incredible when, when that happens, because it then changes

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the whole dynamic of the way people interact with each other.

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But it's, it takes a certain amount of time and you have to have that patience.

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I mean, to develop this shared language, to develop this shared understanding really takes time.

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So in general, when we funded collaborative activity programs,

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we fund them for fairly long periods of time, some for a decade,

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because it does take, I mean, it doesn't take a decade, but it does take time.

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And people have to know that they've got that time, you know,

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that they're not going to solve some problem that has been, you know,

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dogging science for, you know, decades in a weekend.

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That's not what's going to happen. Susanne, your Williams syndrome example,

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that started off in such a more, let's say, social, informal context,

00:19:13.891 --> 00:19:18.111
and then it built up to a collaborative research effort.

00:19:19.251 --> 00:19:25.671
Was that research effort successful and also proportional to the investments you made in it?

00:19:26.811 --> 00:19:31.031
Yeah, I would say so, because it did really enrich our understanding.

00:19:31.251 --> 00:19:35.851
Well, it did a number of things. It really enriched our understanding of Williams syndrome, right?

00:19:36.311 --> 00:19:41.111
Because again, there were these isolated bits and pieces of information,

00:19:41.351 --> 00:19:46.631
but it wasn't until you really began to put them together that you begin to

00:19:46.631 --> 00:19:51.071
see sort of the gaps and the lacunae in our understanding. Right.

00:19:51.768 --> 00:19:56.968
So by filling that in, you really did get a much richer understanding of the syndrome,

00:19:57.328 --> 00:20:02.748
which really led to a much different understanding of what the actual capacities,

00:20:03.008 --> 00:20:12.088
skills, abilities of individuals with Williams syndrome was because they had now a filled out.

00:20:12.088 --> 00:20:14.708
Yeah, but that's a risk.

00:20:14.788 --> 00:20:17.008
That might be a bit of a low bar, no?

00:20:17.128 --> 00:20:22.688
Because in some sense, you, from your position, would like to see,

00:20:22.708 --> 00:20:27.728
if you want, a significant increase in understanding and knowledge by virtue

00:20:27.728 --> 00:20:30.288
of engineering this collaborative effort.

00:20:30.848 --> 00:20:34.408
And in some sense, I could say, well, if I put a few scientists together for

00:20:34.408 --> 00:20:38.248
a workshop on that topic, and they write a volume together on that,

00:20:38.328 --> 00:20:41.548
I could also say like, oh, yeah, there's more integrated knowledge now because

00:20:41.548 --> 00:20:42.948
they wrote a volume together, right?

00:20:42.988 --> 00:20:49.448
So I guess that's not really your measure of success in this case. It must be. No.

00:20:49.928 --> 00:20:56.008
I mean, what we would measure is how much does also do individual research projects

00:20:56.008 --> 00:20:58.708
begin to change as a result of this, right? Right.

00:20:58.748 --> 00:21:03.008
So, I mean, that's the other weird aspect of collaboration, right?

00:21:03.048 --> 00:21:07.268
There's this part where everyone says, okay, here's my part. Here's your part.

00:21:07.468 --> 00:21:11.128
Here's another, we're going to stick all the puzzle pieces together and it's going to work. Right.

00:21:11.708 --> 00:21:17.088
That's not what this is about. This is about growing a broader understanding

00:21:17.088 --> 00:21:19.248
that you have also of your own.

00:21:20.188 --> 00:21:25.328
So, yes, we would, we would like there to be this richer understanding,

00:21:25.328 --> 00:21:30.208
but sometimes with identifying the limits is also really important.

00:21:30.388 --> 00:21:34.188
And one of the things that I think we learned, and I think many of the people

00:21:34.188 --> 00:21:39.348
involved in the Williamson-Jones collaborative learned was how difficult it

00:21:39.348 --> 00:21:44.868
actually is to build an integrated understanding that crosses levels of analysis, right?

00:21:44.968 --> 00:21:51.788
That it's very, it's, it's not just, we can just stick the pieces together. They're.

00:21:52.884 --> 00:21:59.224
There is a certain amount of gappiness to the knowledge base right now that

00:21:59.224 --> 00:22:01.344
is really difficult to solve.

00:22:01.524 --> 00:22:06.344
And we have to be honest and kind of forthright about that instead of wanting

00:22:06.344 --> 00:22:08.804
to tell these very neat stories.

00:22:09.204 --> 00:22:12.924
So what you began to see was people being more comfortable with the fact that

00:22:12.924 --> 00:22:18.944
their knowledge was gappy and that they didn't have to fill in with a lot of

00:22:18.944 --> 00:22:25.224
hand-waving and making broad assumptions or big leaps or building bridges too

00:22:25.224 --> 00:22:27.944
far across some of these gaps in their knowledge, right?

00:22:28.024 --> 00:22:33.404
That acknowledging that, yes, we actually don't understand how this genetic

00:22:33.404 --> 00:22:39.004
defect affects the central nervous system in a way that leads to this cognitive,

00:22:39.144 --> 00:22:42.744
these cognitive changes that manifests as this behavior.

00:22:42.944 --> 00:22:45.924
And that, can we do that?

00:22:46.444 --> 00:22:51.104
That's then, again, for us, That's the interesting part where people begin to

00:22:51.104 --> 00:22:53.864
think, how could we do this?

00:22:54.344 --> 00:23:00.504
And can we do it? However, there's an interesting aspect to this that I feel

00:23:00.504 --> 00:23:03.184
you didn't elaborate that much yet.

00:23:03.224 --> 00:23:07.324
Because in some sense, you are also taking a position where we say,

00:23:07.564 --> 00:23:11.164
okay, we as foundations see an opportunity.

00:23:12.284 --> 00:23:16.144
Now we want to bring these scientists together so that they actually see the

00:23:16.144 --> 00:23:20.844
same opportunity. So, this is a very interesting difference in perspective.

00:23:21.344 --> 00:23:24.964
But then, of course, you have to measure these outcomes. You now,

00:23:25.164 --> 00:23:31.884
as you said it implicitly, you have to now assess the quality of that collaborative

00:23:31.884 --> 00:23:35.904
effort with criteria that the scientists themselves don't have because they're

00:23:35.904 --> 00:23:37.164
not aware that this is even possible.

00:23:37.164 --> 00:23:43.424
So what would be those criteria and how big a proportion of the participants

00:23:43.424 --> 00:23:47.544
in that process would actually satisfy those criteria?

00:23:49.743 --> 00:23:56.823
So that's interesting, because there isn't really a good science yet of collaboration, right?

00:23:56.943 --> 00:24:00.163
I mean, there isn't, I would love to say that, you know, oh,

00:24:00.203 --> 00:24:06.723
we use the, the, the Joe Blow metric of, you know, of a successful collaboration.

00:24:06.723 --> 00:24:08.843
Oh, you don't? Are you not using the Joe Blow?

00:24:10.503 --> 00:24:17.343
How are we in this business? You know, but there isn't there isn't those kind of metrics.

00:24:17.403 --> 00:24:22.443
So actually, I think you hit on the question, the word that that we've really

00:24:22.443 --> 00:24:25.863
focused on, which is this satisfying question.

00:24:26.163 --> 00:24:29.163
Right. What what do you feel is satisfying?

00:24:29.563 --> 00:24:35.783
When when do you feel like this is worth your time? So I think that's one metric

00:24:35.783 --> 00:24:38.123
that we will use, that we have used.

00:24:38.243 --> 00:24:43.683
Who stays involved, right? Who continues to come back meeting after meeting,

00:24:43.683 --> 00:24:46.963
you know, year after year, week after week?

00:24:47.043 --> 00:24:52.823
Who is continuing to share their information, to push their own work in new directions?

00:24:53.523 --> 00:24:58.963
What are the people who were training during this time look like?

00:24:59.043 --> 00:25:02.423
So each of these labs has postdocs and graduate students in them.

00:25:03.804 --> 00:25:07.244
How do they come out of this process, right? What do they look like?

00:25:07.244 --> 00:25:08.604
And what does their work look like?

00:25:08.744 --> 00:25:14.124
I mean, we can do some kind of, you know, altmetric, bibliometric kind of measures.

00:25:14.264 --> 00:25:19.324
We've done some network analysis and we've looked at spread of information and these kinds of things.

00:25:19.584 --> 00:25:28.804
But I think it's more this feel of these human characteristics that I think

00:25:28.804 --> 00:25:30.364
from the a foundation's perspective,

00:25:30.604 --> 00:25:34.924
we would find more satisfying, right?

00:25:35.444 --> 00:25:39.924
But I do think it is important to look at this, like, you know,

00:25:39.924 --> 00:25:45.344
is this new way of looking at this having any influence on the field, right?

00:25:45.404 --> 00:25:47.664
So you begin to look, are papers being decided?

00:25:47.904 --> 00:25:52.204
Is it changing the way discussions are going? Are there now sessions at,

00:25:52.244 --> 00:25:56.544
you know, professional society meetings that are representing this kind of work?

00:25:56.644 --> 00:25:58.204
Is it spreading through the community?

00:25:58.544 --> 00:26:04.484
So we certainly look at all those aspects of it, but from the foundation's perspective,

00:26:04.804 --> 00:26:13.084
it's more this slightly intangible kind of aspect of it that we have found.

00:26:13.164 --> 00:26:17.364
Does it really change the people? There are interesting tensions here, right?

00:26:17.524 --> 00:26:21.324
Now things become interesting because on the one criteria, you could argue,

00:26:21.504 --> 00:26:28.004
criteria, the more explicitly they get defined, the more unidimensional they become.

00:26:28.324 --> 00:26:33.784
So that means to adhere to criteria in some sense will then pull you away from

00:26:33.784 --> 00:26:35.964
a multidisciplinary collaboration.

00:26:36.864 --> 00:26:42.444
But then the alternative might be that you relax your criteria,

00:26:42.484 --> 00:26:46.164
and that means that the the quality of the science is going to suffer,

00:26:46.344 --> 00:26:54.184
or the funder ends up in some self-fulfilling prophecy of confirmation bias.

00:26:54.384 --> 00:26:59.844
Like, oh, it's all very great that we're doing, right? So how do you balance that?

00:27:01.401 --> 00:27:05.301
Yes. I mean, this is the hard part. And yes, one of the things that you as a

00:27:05.301 --> 00:27:09.341
funder have to be very careful of is your own confirmation bias.

00:27:09.481 --> 00:27:15.681
In fact, you know, there's an old cartoon from the New Yorker where one character

00:27:15.681 --> 00:27:19.521
is greeting another character and it says, welcome to the Ford Foundation.

00:27:19.881 --> 00:27:24.941
You'll never eat a bad meal or hear an honest word.

00:27:25.841 --> 00:27:29.161
So I mean so we rarely use

00:27:29.161 --> 00:27:32.121
like people telling us this is the most exciting thing they've

00:27:32.121 --> 00:27:34.961
ever been part of a submit like that's not

00:27:34.961 --> 00:27:38.841
the metric that we use right but you

00:27:38.841 --> 00:27:43.821
can get a sense of that from like again from the commitment right I mean no

00:27:43.821 --> 00:27:49.881
one is going to commit to years of working with somebody if they if they did

00:27:49.881 --> 00:27:55.561
not feel like this was make was improving their own scholarship and making their work better, right?

00:27:56.381 --> 00:28:00.421
And like I said, then you can begin to see the spread of these ideas,

00:28:00.581 --> 00:28:07.161
which in the beginning might have actually been quite radical, into the field, right?

00:28:07.201 --> 00:28:09.481
You can begin to see more of this work going.

00:28:09.681 --> 00:28:14.861
But I think it does come back to this, who do you have in the room at the beginning, right?

00:28:14.941 --> 00:28:21.541
So to some extent, you do have to have some individuals Individuals who have,

00:28:21.701 --> 00:28:27.141
you know, who are, who are, you know, quite prominent in their field, right?

00:28:27.241 --> 00:28:31.701
I mean, then you need the junior people who have the energy.

00:28:31.801 --> 00:28:36.941
You need a good mix of men and women. You need a good mix of diversity of ideas.

00:28:37.121 --> 00:28:43.401
And you also need to have what I say, what I often call them is like the friendly naysayers.

00:28:44.873 --> 00:28:50.413
The people who are not quite sure this is a good idea, but they're open minded

00:28:50.413 --> 00:28:56.253
enough to to become involved, at least initially. Right.

00:28:56.493 --> 00:29:01.233
And so can you win? Do they get won over as part of the process?

00:29:01.393 --> 00:29:03.213
Right. I mean, they serve two roles.

00:29:03.393 --> 00:29:08.493
One is they again put this little check sometimes on the enthusiasm. orgasm.

00:29:09.133 --> 00:29:15.293
But also when you begin to see that they get really engaged in the conversations,

00:29:15.533 --> 00:29:19.733
the discussions, and might even change their own minds about the work.

00:29:20.373 --> 00:29:25.613
That to me is another metric. So these are these informal, I mean,

00:29:25.633 --> 00:29:32.353
I hate to say it, but this is the expertise to some extent of a foundation program officer.

00:29:32.453 --> 00:29:35.613
This is what we do. This is what we know.

00:29:36.473 --> 00:29:45.213
And so I'm not willing to often be self-congratulatory about these things because they're fragile and,

00:29:45.453 --> 00:29:52.833
you know, you won't know for 20, 30 years whether they were actually successful or not, right?

00:29:52.993 --> 00:29:58.073
I mean, you can have your short-term measures, the long-term measures of has

00:29:58.073 --> 00:30:03.393
it really altered altered, the way the field might be talking about some of

00:30:03.393 --> 00:30:06.813
these questions, is that takes,

00:30:07.353 --> 00:30:09.133
a longer period of time.

00:30:09.233 --> 00:30:12.793
And you might actually have to wait till the second generation,

00:30:13.113 --> 00:30:18.413
you know, the children and grandchildren of the collaborative sort of come along

00:30:18.413 --> 00:30:20.553
to see how much of an impact that's really had.

00:30:20.713 --> 00:30:24.073
For the sufferers of Williams syndrome, that might be a little bit,

00:30:24.113 --> 00:30:25.673
a very long time window. Yeah.

00:30:27.256 --> 00:30:31.296
Yes, but again, if you have a better understanding of the condition,

00:30:31.916 --> 00:30:37.776
right, if you really, I mean, and there are certainly short-term progress that

00:30:37.776 --> 00:30:42.436
is made, right, better characterization of the genetics, better characterization of the cognition.

00:30:42.656 --> 00:30:47.316
I mean, if you're working on a very limited understanding of the phenotype,

00:30:47.596 --> 00:30:51.236
it's also very difficult for you to understand what's the best way to support

00:30:51.236 --> 00:30:55.556
these individuals as they pursue their lives, what's the best way.

00:30:55.556 --> 00:31:01.856
So you can, you know, are you going to fix Williams syndrome by understanding

00:31:01.856 --> 00:31:08.116
the genetic defect or are you going to have to really understand the developmental trajectory,

00:31:08.636 --> 00:31:12.776
the interacting unfolding that's going on over time?

00:31:12.776 --> 00:31:18.276
And I think this is one of the issues that definitely came out of that collaborative,

00:31:18.556 --> 00:31:24.716
right, that if you really understand and have a deep respect for the developmental

00:31:24.716 --> 00:31:30.356
process, the idea that you're going to fix something by going back to its initial

00:31:30.356 --> 00:31:33.336
cause is probably fairly unlikely.

00:31:33.556 --> 00:31:38.296
And so we're going to have to look for interventions that actually interact

00:31:38.296 --> 00:31:40.676
with this unfolding developmental trajectory.

00:31:41.716 --> 00:31:45.896
And that, you know, might be a better way. And again, to be a better supportive,

00:31:46.076 --> 00:31:54.676
you're not going to, I mean, in many ways, individuals with developmental syndromes are,

00:31:54.876 --> 00:31:57.136
don't need to be fixed.

00:31:57.496 --> 00:32:03.996
I mean, enabled to live their lives in the world, you know.

00:32:05.011 --> 00:32:08.571
So this is what the two of you are referring to.

00:32:08.691 --> 00:32:15.331
And as someone who is not in your field, I'm not really sure what the Williams syndrome is.

00:32:15.511 --> 00:32:22.571
But I get a sense that there is some need for expediency, right?

00:32:23.191 --> 00:32:27.131
That is, it would be great if you could have results sooner rather than later,

00:32:27.211 --> 00:32:33.291
because Because people's lives hang on, and the quality of their lives rest

00:32:33.291 --> 00:32:36.411
on the progress of this science.

00:32:36.691 --> 00:32:41.731
So thinking, you've been talking a lot about the structure of these communities

00:32:41.731 --> 00:32:50.731
and how deliberately you as a foundation think about who should be in that room.

00:32:50.731 --> 00:32:58.091
How do you structure then what happens inside that room to encourage the building

00:32:58.091 --> 00:33:01.451
of that trust that you spoke so eloquently about earlier?

00:33:01.571 --> 00:33:03.871
That's like kind of the necessary ingredient.

00:33:04.691 --> 00:33:10.991
And then how does that structure shape? How much are you thinking about the

00:33:10.991 --> 00:33:14.751
rate of progress of this project?

00:33:15.671 --> 00:33:23.171
So one, Jenna, Williams syndrome is not a life-threatening developmental disability, right?

00:33:23.251 --> 00:33:27.911
So there is certainly a need for better understanding and better support,

00:33:28.011 --> 00:33:30.451
better educational systems and these kinds of things.

00:33:30.531 --> 00:33:38.031
But it's not like it requires, you know, something, an immediate intervention, right?

00:33:38.711 --> 00:33:42.731
Now, there are other areas where you could see something like that.

00:33:42.731 --> 00:33:45.291
I mean, I think, you know, if

00:33:45.291 --> 00:33:50.971
you really wanted to, I mean, to use a very contemporary example, right?

00:33:51.091 --> 00:34:00.271
I mean, if you really wanted to understand why the Miami condominium complex collapsed, right?

00:34:00.371 --> 00:34:06.831
There's an immediacy about that. And I think this is the kind of question that

00:34:06.831 --> 00:34:12.571
I think very quickly, you know, you're going to need a group of experts to come

00:34:12.571 --> 00:34:14.771
together around this problem.

00:34:15.071 --> 00:34:20.311
And you're going to find it's not a single cause, right, that there were all kinds of things.

00:34:20.371 --> 00:34:25.351
And it's going to go from the engineering perspective all the way up to the

00:34:25.351 --> 00:34:29.651
social governance issues around these things.

00:34:29.651 --> 00:34:34.391
But if we want this to be better in the future, we're going to have to bring

00:34:34.391 --> 00:34:38.391
that kind of information together, and it's going to have to happen relatively quick.

00:34:38.551 --> 00:34:43.831
So there is some place where I think you need to foster that kind of dialogue.

00:34:44.291 --> 00:34:49.411
So how do you do that? I mean, it's very different depending on the question.

00:34:49.611 --> 00:34:53.471
And so every one of our collaborative activity awards, and we probably have

00:34:53.471 --> 00:34:58.151
had 30 or 40 of them now, look very different in their structure.

00:34:59.241 --> 00:35:04.881
So there are some that I would call like the hub and spoke kind of structure, right?

00:35:04.961 --> 00:35:11.441
There's a central core group of people, and then there are these connections

00:35:11.441 --> 00:35:18.681
to them where people are contributing to a different extent and on different points.

00:35:18.901 --> 00:35:27.041
Then there's this highly sort of network piece where these people really do come together.

00:35:27.041 --> 00:35:31.781
And to get back to Paul's earlier question, this is a place where you can actually

00:35:31.781 --> 00:35:37.121
do some scholarship because when they initially come in, they have very few

00:35:37.121 --> 00:35:38.721
connections amongst each other.

00:35:38.761 --> 00:35:43.741
They might have read a paper or maybe cited somebody one time.

00:35:43.821 --> 00:35:48.461
And over time, you can see how their connections and their networks grow.

00:35:48.461 --> 00:35:53.681
So the hub and spoke structure and the network structure require a very different

00:35:53.681 --> 00:35:58.441
kind of support, both financially and socially, right?

00:35:58.761 --> 00:36:05.061
Because the hub and spoke, it's how do you keep the outlying groups kind of

00:36:05.061 --> 00:36:09.401
engaged all the time when they're not part of the core center, right? Right.

00:36:09.441 --> 00:36:13.421
So you really have to think about are you going to how are you going to pull those people in?

00:36:13.501 --> 00:36:17.061
Is it going to be through, you know, an annual meeting?

00:36:17.181 --> 00:36:19.801
Is it going to be through regular dialogue?

00:36:19.981 --> 00:36:28.441
Is it by creating strong links between each one of those core with the core?

00:36:28.641 --> 00:36:33.241
Right. Or do you begin to think about how you could build little links between

00:36:33.241 --> 00:36:37.781
them that will keep them linked? So a lot of it depends on the question that's

00:36:37.781 --> 00:36:43.101
being asked and the kind of experts that are actually engaged.

00:36:44.441 --> 00:36:51.061
So I don't mean to be vague about this. It's just that it is highly unique to each.

00:36:51.421 --> 00:36:53.361
There's no magic formula.

00:36:53.781 --> 00:36:59.701
And I've heard a few other foundations have said, oh, here's how we do it.

00:36:59.701 --> 00:37:04.101
We, you know, you get this kind and it has to be this number of people and they

00:37:04.101 --> 00:37:07.901
have to, you know, represent this, you know, these many different disciplines

00:37:07.901 --> 00:37:10.521
and they have to meet this many times.

00:37:10.621 --> 00:37:15.161
And, you know, I'm not sure that that any of that would hold up to scrutiny

00:37:15.161 --> 00:37:19.221
because I think every single one of these has its own dynamic,

00:37:19.321 --> 00:37:20.841
has its own personality,

00:37:21.101 --> 00:37:29.001
has its own, and you have to be willing as the funder to let that structure emerge.

00:37:29.701 --> 00:37:32.381
I mean, there are times that you may want to come in and say.

00:37:33.855 --> 00:37:36.995
All right, this is going sideways a little bit now.

00:37:37.335 --> 00:37:42.595
I mean, I can tell you, I have one collaborative group where it was co-led and

00:37:42.595 --> 00:37:48.795
each of the co-leaders was emailing me almost simultaneously telling me why

00:37:48.795 --> 00:37:51.835
they didn't feel like they wanted to work with the other person, right?

00:37:52.075 --> 00:37:57.555
So, I mean, talk about, and it was based on this issue of trust.

00:37:57.755 --> 00:37:58.795
They didn't trust one another.

00:37:59.015 --> 00:38:01.995
And so to some extent you have to say, okay, this is not gonna work.

00:38:02.095 --> 00:38:03.695
I mean, this is not gonna work.

00:38:03.855 --> 00:38:08.995
So how do we salvage this? Do we then just accept that this is not going to

00:38:08.995 --> 00:38:17.415
work and you let them go off in their own direction and hope that there's some

00:38:17.415 --> 00:38:21.035
other way that you can bring this back together again?

00:38:21.115 --> 00:38:23.235
But sometimes it just doesn't work.

00:38:23.375 --> 00:38:26.675
And you could have all the right ingredients, right?

00:38:26.755 --> 00:38:31.055
You could have all your checklist items checked off and it's not going to work

00:38:31.055 --> 00:38:40.895
because the personalities or the trust or the prior experience that individuals have had intrudes.

00:38:41.095 --> 00:38:43.715
And you won't know that until you try.

00:38:44.235 --> 00:38:48.775
So, okay, so this is fascinating. And you're anticipating exactly where I was

00:38:48.775 --> 00:38:52.275
hoping to go next, which is just to explore the failures of collaboration,

00:38:52.575 --> 00:38:53.655
which is a very real thing.

00:38:54.215 --> 00:39:01.235
And you've just laid out an explanation, which is based on personalities,

00:39:01.475 --> 00:39:02.695
you know, which of course happens.

00:39:02.995 --> 00:39:08.715
To what extent do you think it might, but you've also been talking about trust

00:39:08.715 --> 00:39:14.375
and about how structure contributes to the building up of trust.

00:39:14.595 --> 00:39:18.295
So to what extent do you think that structure might be related to failure as well?

00:39:19.735 --> 00:39:22.395
Yes, I think, I think it, it does.

00:39:23.935 --> 00:39:30.155
So if, if the person who is kind of the lead, who's taking the lead on this, right?

00:39:30.255 --> 00:39:35.535
Is the person who first, so there's different ways that the foundation has supported

00:39:35.535 --> 00:39:36.475
collaboratives, right?

00:39:36.535 --> 00:39:41.495
Sometimes we have gone out and sort of tried and put a group together around a problem.

00:39:41.675 --> 00:39:46.075
Sometimes someone brings us an idea, right? And they really want to build a

00:39:46.075 --> 00:39:48.175
collaborative around a certain project.

00:39:48.435 --> 00:39:56.595
What you find out later is that that person really just wants to build their own science.

00:39:56.595 --> 00:40:00.535
And what they really want from their collaborators is that the collaborators

00:40:00.535 --> 00:40:04.535
are going to give him or her what they need, right?

00:40:05.921 --> 00:40:11.641
That often turns into a disaster, right? Because that undermines every aspect

00:40:11.641 --> 00:40:15.661
of what you're trying to do with collaboration, the shared common knowledge,

00:40:15.921 --> 00:40:18.701
the shared problem, the contribution,

00:40:19.241 --> 00:40:24.021
the learning from one another, the change that's going to occur within each person.

00:40:24.381 --> 00:40:28.661
But sometimes you just don't know that until they've started working.

00:40:28.881 --> 00:40:35.201
But invariably, that's a complete and utter failure. So if somebody just wants

00:40:35.201 --> 00:40:40.821
something and they need it to get it from other people, then that's not going

00:40:40.821 --> 00:40:42.701
to work as a collaborative process.

00:40:42.941 --> 00:40:46.401
Is there a way to mitigate that? Like, is there a way for you to recognize that

00:40:46.401 --> 00:40:49.421
before you get involved in it?

00:40:49.421 --> 00:40:55.801
And it can be hard until you, unless you know the person very well,

00:40:55.941 --> 00:41:01.501
like there are some people who, or for instance, there's somebody who would

00:41:01.501 --> 00:41:06.381
say, I want to really put this collaborative group together and I want to involve X.

00:41:07.881 --> 00:41:09.401
Because, you know, that's the

00:41:09.401 --> 00:41:12.761
big name in the field and this would be wonderful to get them involved.

00:41:12.961 --> 00:41:16.901
And I would say, you have X in the room and you have nobody else in the room.

00:41:19.241 --> 00:41:23.221
Because that person does not want to collaborate, you know, and they don't want

00:41:23.221 --> 00:41:24.661
to be part of a collaborative process.

00:41:25.001 --> 00:41:29.461
So sometimes you can mitigate it. If you know the field well enough that,

00:41:29.481 --> 00:41:32.241
you know, the different actors that are involved,

00:41:32.481 --> 00:41:39.541
if you don't, if I, if I, if we don't know the field well enough to know all

00:41:39.541 --> 00:41:40.761
of that, then it's a risk.

00:41:41.001 --> 00:41:47.361
Then you just have to say, okay, let's hope that this is going to work.

00:41:48.501 --> 00:41:52.841
And you've talked about it enough about, you know, what does it have to have?

00:41:53.041 --> 00:41:59.801
Who's in there? I mean, we also get, you know, we will ask for proposals and plans as part of this.

00:41:59.881 --> 00:42:03.961
We'll get external advice on this, you know, from people who will say,

00:42:04.141 --> 00:42:07.441
gee, this is a great idea and this is exactly what needs to happen.

00:42:07.501 --> 00:42:10.861
They don't have the right people at the table. Right. Right.

00:42:11.581 --> 00:42:15.741
Then you can rethink that, then you can mitigate it to some extent by saying,

00:42:15.801 --> 00:42:18.181
could we get some of those people at the table?

00:42:18.881 --> 00:42:25.201
Or are they open? Here to unpack, on the one hand, if we speak of success or

00:42:25.201 --> 00:42:26.461
failure, that's not binary.

00:42:27.301 --> 00:42:32.721
So you spoke about 30 plus projects, the collaborative projects that you have supported.

00:42:34.081 --> 00:42:37.081
Now over those 30, how many were failures?

00:42:39.023 --> 00:42:44.523
See, you're acting like one of my board members now, Paul. They always want

00:42:44.523 --> 00:42:45.443
to hear about the failures.

00:42:45.743 --> 00:42:49.583
And so in reality, I don't think any of them fail.

00:42:49.903 --> 00:42:53.883
No, but that's exactly the point I want to get to, right? So what is failure

00:42:53.883 --> 00:42:55.203
in this? You're less successful.

00:42:56.543 --> 00:43:03.563
Exactly. I mean, failure to me would mean that it fell completely apart.

00:43:04.443 --> 00:43:08.623
Nothing got learned. And in fact, a lot of bridges got burned.

00:43:09.023 --> 00:43:12.723
Right. That to me would actually be a failure. And I think Jen is right.

00:43:12.843 --> 00:43:20.823
You usually can mitigate the situation so that that does not happen because invariably, you know,

00:43:20.863 --> 00:43:26.603
you live to go for another day and this whole opportunity may resurface at a

00:43:26.603 --> 00:43:28.803
different point. You don't want everything.

00:43:29.443 --> 00:43:37.363
This was my premise to try to see what are the dimensions that underlie success or failure.

00:43:37.503 --> 00:43:44.963
Right. So because now we highlighted more the psychological one of personality and needs,

00:43:45.243 --> 00:43:52.203
but maybe there are other aspects that will influence how you scale in which

00:43:52.203 --> 00:43:56.223
your project on that more continuous dimension of success.

00:43:57.623 --> 00:44:00.723
Right. So you can think about it as, did it succeed scientifically?

00:44:01.663 --> 00:44:04.923
Did actually new research and

00:44:04.923 --> 00:44:10.223
scholarship that really enlarged the problem that we were interested in.

00:44:11.303 --> 00:44:17.583
Is it having an impact on the field? Is it changing the way people are thinking about this problem?

00:44:18.083 --> 00:44:21.423
So you can look at the scientific aspect of that.

00:44:23.459 --> 00:44:27.279
What we also look for is, are we moving beyond, you know, the metaphor,

00:44:27.319 --> 00:44:33.399
you know, so when someone says, oh, brain tumors spread just like,

00:44:33.439 --> 00:44:36.059
you know, forest fires, do they really?

00:44:36.319 --> 00:44:40.179
You know, I mean, it's nice to sort of have that, you know, and people can get

00:44:40.179 --> 00:44:43.619
very excited about this idea, but it's not until you push on the metaphor, right?

00:44:43.659 --> 00:44:47.159
So you can have the, so then I guess it's like the scientific,

00:44:47.239 --> 00:44:49.479
there's the linguistic shared language approach.

00:44:50.599 --> 00:44:57.599
And I think there's this social generational aspect that I think is a really important metric.

00:44:57.779 --> 00:45:00.999
How does it change the field going forward, right?

00:45:01.319 --> 00:45:09.379
Does it open up new opportunities for junior scholars? Is it opening new ground?

00:45:09.519 --> 00:45:16.919
Is it creating new opportunities so that you can see a next generation of scholars

00:45:16.919 --> 00:45:22.019
who move much more comfortably into this interstitial space that was between

00:45:22.019 --> 00:45:24.879
two or three disciplines, right?

00:45:25.019 --> 00:45:31.819
So I think at each of those levels, you have to have a different level of metric.

00:45:32.539 --> 00:45:36.899
Some are going to be more successful and some will be more successful than others

00:45:36.899 --> 00:45:43.899
some might be really successful would you like some tea maybe you want a drink thank you.

00:45:46.839 --> 00:45:49.819
So some might be really successful at the

00:45:49.819 --> 00:45:57.399
intergenerational aspect of this and maybe they never really got to pressing

00:45:57.399 --> 00:46:01.539
enough on the metaphorical language and that's going to happen in the future

00:46:01.539 --> 00:46:07.119
I think the most important part is also the scientific depth,

00:46:07.279 --> 00:46:11.099
that it doesn't stay at the surface, right?

00:46:11.239 --> 00:46:15.379
That the science really was deep.

00:46:15.639 --> 00:46:17.679
Right. But now to judge that.

00:46:19.219 --> 00:46:22.399
That was the other thing I wanted to unpack, because as you said earlier,

00:46:22.839 --> 00:46:29.139
once we get a proposal from that community or that group of researchers,

00:46:29.139 --> 00:46:31.939
researchers we will have experts look at that but these

00:46:31.939 --> 00:46:35.099
are other researchers so now now we have an other form of

00:46:35.099 --> 00:46:38.519
collaboration because we have two groups of researchers or

00:46:38.519 --> 00:46:42.979
one is in some sense proposing something and the quality that assessed by others

00:46:42.979 --> 00:46:48.259
so how do you how do you work with that how do you structure yeah so in some

00:46:48.259 --> 00:46:53.559
so in some way even the way that we interpret those results when they come back

00:46:53.559 --> 00:46:56.479
um sometimes somebody will say you know,

00:46:57.973 --> 00:47:03.213
this is a this is going to be a really difficult problem you know uh you know

00:47:03.213 --> 00:47:07.013
there's some good people involved here or whatever but i'm not convinced they're

00:47:07.013 --> 00:47:12.313
going to be able to pull it off that's not a reason for us not to support it right i mean.

00:47:14.813 --> 00:47:17.873
Excuse me that's a reviewer doing their due diligence

00:47:17.873 --> 00:47:20.513
right what's interesting is when you

00:47:20.513 --> 00:47:23.373
have a reviewer who says wow i really

00:47:23.373 --> 00:47:26.253
want to be a part of this how do i get involved in this

00:47:26.253 --> 00:47:29.553
thing right so again they

00:47:29.553 --> 00:47:32.853
can help they can help with that because they'll also can

00:47:32.853 --> 00:47:35.793
one they can identify whether the question is

00:47:35.793 --> 00:47:40.693
interesting whether you've got the right expertise and whether you've got the

00:47:40.693 --> 00:47:46.353
right mix of personalities to make something pull off because they often know

00:47:46.353 --> 00:47:51.693
know the individuals better so even how you pick reviewers is part of the process

00:47:51.693 --> 00:47:53.953
right you want I want people who are familiar with the foundation,

00:47:54.233 --> 00:47:56.393
familiar with what we're trying to do.

00:47:56.633 --> 00:48:00.413
I mean, I don't just go out and pick a name out of the phone book, right?

00:48:00.773 --> 00:48:07.413
I also have trusted, I have trusted advisors that I use to help me make these kinds of decisions.

00:48:07.753 --> 00:48:14.593
But you will, that also constrains your room for maneuver because for your own

00:48:14.593 --> 00:48:17.473
credibility and the trust people would place in you,

00:48:17.713 --> 00:48:23.853
you also have to make sure that you stay roughly within the realms of what these

00:48:23.853 --> 00:48:25.753
experts would find tolerable.

00:48:26.953 --> 00:48:32.373
Yes. But you pick the experts who have, by their own track record,

00:48:32.553 --> 00:48:39.113
you know, are people who are open to new ideas, who have taken risks in their own career,

00:48:40.113 --> 00:48:42.753
who, you know, are not somebody who's.

00:48:44.119 --> 00:48:45.199
Been overly narrow.

00:48:47.599 --> 00:48:54.199
It's a good balance. Oftentimes, we don't call them reviewers, we call them advisors.

00:48:55.399 --> 00:48:57.019
They're giving us their advice.

00:48:58.259 --> 00:49:05.859
If you go against the advice of your advisors all the time, you won't have very many after a while.

00:49:06.659 --> 00:49:12.599
Sometimes it's also an iterative process. We've gone back and forth where we've

00:49:12.599 --> 00:49:18.959
taken some of the comments from the advisors that we've gotten and gone back to the group and said,

00:49:19.079 --> 00:49:21.979
here's some of the feedback that we're getting. What do you think?

00:49:22.479 --> 00:49:25.639
So it itself is a collaborative process, right?

00:49:25.779 --> 00:49:29.359
I mean, getting to the point where we're going to say, okay,

00:49:29.419 --> 00:49:32.999
let's launch this thing isn't itself a collaborative process.

00:49:33.659 --> 00:49:36.959
So I don't know if we're going to have time, but I wanted to talk about one

00:49:36.959 --> 00:49:42.359
other thing that we've done professionally that I have found really interesting,

00:49:43.039 --> 00:49:45.659
and that's collaborating with other funders.

00:49:46.279 --> 00:49:48.739
That's exactly where I was about to go.

00:49:50.759 --> 00:49:55.379
You're a psychic. Please, tell us about that process.

00:49:55.999 --> 00:50:01.019
This was something that, again, it can be done quite deliberate,

00:50:01.159 --> 00:50:04.059
and it raises many of the same issues.

00:50:04.699 --> 00:50:10.979
Private foundations, by their nature, are idiosyncratic and individual, right?

00:50:11.079 --> 00:50:16.999
So how do you get more than one private funder to work together?

00:50:17.619 --> 00:50:22.159
And we've done it a number of times.

00:50:22.319 --> 00:50:26.579
We had this long-running program with the Pew Charitable Trust that was called

00:50:26.579 --> 00:50:28.699
the McDonald Pew Program in Cognitive Neuroscience.

00:50:30.085 --> 00:50:35.765
We had a joint effort with the MacArthur Foundation that lasted a number of years.

00:50:36.005 --> 00:50:40.225
And we have, and currently we're part of something called the Brain Tumor Funders

00:50:40.225 --> 00:50:46.705
Collaborative, which is a six-funder organization, virtual organization,

00:50:46.725 --> 00:50:50.805
has no real structure, that works collaboratively.

00:50:50.805 --> 00:50:57.565
And for each of those, we have found, in fact, the Brain Tumor Funders Collaborative was a deliberate,

00:50:57.725 --> 00:51:05.085
intentional coming together because many of the funders in brain tumor felt

00:51:05.085 --> 00:51:09.805
like there needed to be more collaboration among brain tumor researchers.

00:51:09.805 --> 00:51:15.185
And we all said, well, if we're asking researchers to collaborate,

00:51:15.465 --> 00:51:16.665
why aren't we collaborating?

00:51:17.385 --> 00:51:24.565
Like, you got a bunch of small funders, small independent funders giving out piecemeal grants.

00:51:24.745 --> 00:51:27.625
What if we actually came together and worked together?

00:51:27.825 --> 00:51:30.285
And we found that collaboration is not that easy.

00:51:30.545 --> 00:51:35.625
It takes time, and it takes this building of trust, and it takes this mutual

00:51:35.625 --> 00:51:40.225
respect. It takes a willingness to recognize other ways of knowing.

00:51:41.385 --> 00:51:46.905
You know, for instance, I come at brain tumor from my neuroscience perspective.

00:51:47.645 --> 00:51:51.585
There are others who come to them because they've lost a family member to brain tumor.

00:51:51.765 --> 00:51:57.265
So what they see as important or interesting and what I see as important and

00:51:57.265 --> 00:52:01.625
interesting, we really had to learn from one another in doing that.

00:52:03.445 --> 00:52:09.225
But what I've often found too is that what collaboration among funders does

00:52:09.225 --> 00:52:12.765
not work is when I have an idea and

00:52:12.765 --> 00:52:16.445
I've got a project that I want to have funded and now I shop it around.

00:52:17.105 --> 00:52:20.765
I say, this is too expensive for the James S. McDonald Foundation.

00:52:21.105 --> 00:52:22.785
Do you want to kick in a million?

00:52:24.445 --> 00:52:28.825
Invariably, that doesn't float anybody's boat. Why doesn't that work?

00:52:28.925 --> 00:52:29.925
What if it's a great idea?

00:52:30.145 --> 00:52:34.125
Why wouldn't that work? I think it's, again, it's because of this distributed

00:52:34.125 --> 00:52:44.305
decision-making, this idiosyncratic nature, this sense that this is not really, this isn't ours, right?

00:52:44.385 --> 00:52:49.105
This is yours, and we're going to fund it. So what we have found works much

00:52:49.105 --> 00:52:55.065
better is to reach out to a funder that has a shared interest in the areas that

00:52:55.065 --> 00:52:56.505
we're interested in and say,

00:52:56.705 --> 00:53:00.045
hey, we're thinking about trying to do something in this field,

00:53:00.145 --> 00:53:04.065
but it's going to take more resources than what we can do alone.

00:53:04.545 --> 00:53:09.405
Is this something you would be interested in? And we can go through the exploratory

00:53:09.405 --> 00:53:12.025
process together, right? Right.

00:53:12.783 --> 00:53:20.543
So you're saying that this process of defining even the project's ambitions needs to be inclusive.

00:53:21.583 --> 00:53:26.363
I think it does, because it's very rare that you're going to come up with a

00:53:26.363 --> 00:53:30.163
project that really fits your mission, your foundation's mission,

00:53:30.343 --> 00:53:31.283
your foundation's vision.

00:53:31.363 --> 00:53:35.703
It's going to map perfectly onto somebody else's mission and vision, right?

00:53:35.703 --> 00:53:44.583
So you also realize that by doing this, does it enrich your original vision

00:53:44.583 --> 00:53:49.563
or is this something that's going to now dilute your original vision?

00:53:49.563 --> 00:53:55.683
And that gave us a lot of insights also into the research collaboratives that

00:53:55.683 --> 00:53:59.363
we're funding, that people who are coming together,

00:53:59.563 --> 00:54:04.003
each of them has to have their own interests and their own research,

00:54:04.063 --> 00:54:06.763
to some extent, enriched by the process,

00:54:07.083 --> 00:54:09.283
not diluted by the process.

00:54:09.883 --> 00:54:15.663
That's interesting. And so I think that's… It really speaks to what you mentioned

00:54:15.663 --> 00:54:21.143
in the beginning, because it would mean that a common goal has really to be

00:54:21.143 --> 00:54:23.963
a shared goal and not an adopted goal, right?

00:54:24.023 --> 00:54:26.623
This is really what you're articulating here very explicitly.

00:54:27.123 --> 00:54:31.823
And it has to be a goal with added value for the recipient.

00:54:33.203 --> 00:54:39.163
Right. I think this is a very clear conclusion from that. But have you found

00:54:39.163 --> 00:54:44.603
these collaborations with other institutions and foundations so far successful enough?

00:54:44.663 --> 00:54:48.603
Or is it still a process in the making? You're getting there.

00:54:49.854 --> 00:54:56.074
So I would say that the McDonald-Pugh program, which ran for a little over a decade,

00:54:56.414 --> 00:55:03.114
was a successful collaboration because both the Pew Charitable Trust and the

00:55:03.114 --> 00:55:06.454
McDonald Foundation had been looking at the possibility of doing something in

00:55:06.454 --> 00:55:10.554
the area of this emerging sort of cognitive neuroscience field, right?

00:55:11.054 --> 00:55:15.094
What was interesting is that we had very different goals, right?

00:55:15.134 --> 00:55:18.814
The foundation wants to understand the mind-brain problem, right?

00:55:18.814 --> 00:55:20.554
Right. That's what we're interested in.

00:55:20.634 --> 00:55:28.494
Like what Pew is interested in is how does a unique academic discipline emerge and become solidified?

00:55:29.914 --> 00:55:35.574
So they were interested much more in the structure of things like should there be a summer institute?

00:55:35.754 --> 00:55:39.434
Should they have its own journal? Should they have a society? Right.

00:55:40.174 --> 00:55:47.074
Once those institutions were sort of in place, they declared victory and kind of moved on.

00:55:47.214 --> 00:55:52.354
Right. I mean, we said, wait a minute, do we still understand the mind-brain problem?

00:55:52.934 --> 00:55:57.774
No, like we now have a field that's explicitly focused on studying this problem.

00:55:57.914 --> 00:56:02.114
But I'd say we're no closer to answering it than we were, you know, 10 years ago.

00:56:02.214 --> 00:56:05.114
I still think we're not very close to answering the question,

00:56:05.214 --> 00:56:06.974
despite all the research that has been done.

00:56:07.214 --> 00:56:10.134
So that's why the foundation has stayed in that field.

00:56:10.234 --> 00:56:15.794
Right. Because we're interested in the scientific question, not the structures

00:56:15.794 --> 00:56:21.494
around it. So that was a collaboration that worked because while we had a shared interest,

00:56:22.857 --> 00:56:26.837
We somehow managed to make it work, even though we had somewhat shared,

00:56:26.997 --> 00:56:29.617
not shared goals, outcome goals.

00:56:31.277 --> 00:56:36.357
MacArthur Foundation had a very different agenda than the foundation.

00:56:36.557 --> 00:56:39.157
And actually, it never really gelled.

00:56:39.437 --> 00:56:44.317
I mean, the two foundations were just too different from our underlying philosophy.

00:56:44.857 --> 00:56:49.557
And so I think it was not as successful. I think the work that got done,

00:56:49.657 --> 00:56:53.217
this was one of their networks in early experience and child development,

00:56:53.377 --> 00:56:58.977
the work that got done through there was really quite good, really excellent science.

00:57:00.117 --> 00:57:04.437
But I would say our collaboration, the collaboration between the two funders

00:57:04.437 --> 00:57:05.977
was less than successful.

00:57:07.117 --> 00:57:10.237
Brain Tumor Funders Collaborative is amazing. I mean, it's been around,

00:57:10.377 --> 00:57:12.957
we've been working together now for almost 20 years.

00:57:12.957 --> 00:57:16.637
Yeah and even though

00:57:16.637 --> 00:57:19.877
except for myself almost every other partner has rotated

00:57:19.877 --> 00:57:24.617
out so okay we're

00:57:24.617 --> 00:57:29.537
sustaining we're working it's working both as a class as a funder collaborative

00:57:29.537 --> 00:57:35.477
and i think the science that it has changed actually the nature of even how

00:57:35.477 --> 00:57:42.557
funders disease disease-specific funders and advocacy groups interact with the scientific community.

00:57:42.997 --> 00:57:49.117
I mean, it has totally created a new model of collaboration because we consider

00:57:49.117 --> 00:57:53.817
the brain tumor funders collaborative, the funders, the researchers,

00:57:54.237 --> 00:57:56.157
the advocates, the patients.

00:57:56.497 --> 00:57:59.537
So it's a very different approach.

00:57:59.997 --> 00:58:06.637
Right. Given this long experience you have with collaboration in the research

00:58:06.637 --> 00:58:09.677
community between funding organizations and so on,

00:58:10.657 --> 00:58:17.077
what do you see as the critical questions that you will have to answer to yourself

00:58:17.077 --> 00:58:23.377
and your organization to further improve your ability to instill collaboration?

00:58:24.857 --> 00:58:30.417
What are the critical issues right now? So I think, again, collaborative science

00:58:30.417 --> 00:58:37.037
is, in some ways, the way of the future right now, right?

00:58:37.137 --> 00:58:43.137
I mean, almost all funders are looking at how to get teams of people working together.

00:58:43.277 --> 00:58:47.077
And this whole science of team science is kind of emerging right now.

00:58:48.577 --> 00:58:53.417
So I think the challenge for the field is exactly the questions that you've been asking.

00:58:53.797 --> 00:59:00.257
What are we going to use to determine whether these approaches are actually

00:59:00.257 --> 00:59:02.577
getting us better science?

00:59:03.217 --> 00:59:08.557
I mean, there's this implicit, and we're as guilty of it as anyone.

00:59:08.717 --> 00:59:14.817
We have this implicit sense that for some of the kinds of questions that we're asking.

00:59:16.610 --> 00:59:21.490
You really must, getting back to the original, you know, information theory

00:59:21.490 --> 00:59:29.310
and synergy, that it requires that you have information from multiple sources, right?

00:59:30.410 --> 00:59:35.810
But is that, how will we know that that's really true?

00:59:36.030 --> 00:59:41.850
So I think this deeper understanding of collaboration that you've been sort

00:59:41.850 --> 00:59:46.190
of pushing at is exactly the challenge going forward.

00:59:46.850 --> 00:59:52.010
Because now collaboration is everywhere. And so when something is everywhere, it's nowhere.

00:59:52.250 --> 00:59:58.210
And so to some extent, we have to now begin to think about collaboration for

00:59:58.210 --> 01:00:00.430
collaboration's sake, whatever that is,

01:00:00.670 --> 01:00:04.710
right, which gets us back to everyone just shoving their puzzle piece together

01:00:04.710 --> 01:00:12.790
versus this true building of this shared understanding around a common problem.

01:00:12.790 --> 01:00:21.550
So, to our conclusions, Suzanne, one thing is, if you look at the domain of

01:00:21.550 --> 01:00:25.010
neuroscience, there have been massively ambitious initiatives,

01:00:25.490 --> 01:00:31.130
the European Brain Project, the American Brain Project, huge investments to

01:00:31.130 --> 01:00:36.130
build industrial-scale collaboration in the field of neuroscience.

01:00:36.130 --> 01:00:38.890
Science and we now after about

01:00:38.890 --> 01:00:41.710
eight to ten years of that we cannot really

01:00:41.710 --> 01:00:47.730
say it was a massive success so so that would also then make you make you sort

01:00:47.730 --> 01:00:52.570
of question a little bit whether humans are as such actually capable to collaborate

01:00:52.570 --> 01:00:56.990
on any sort of significant scale right so so what's your view on that do you

01:00:56.990 --> 01:01:01.030
think that humans will be able in the end under ideal circumstances to

01:01:01.150 --> 01:01:05.870
really, truly collaborate as we wish they would or not.

01:01:07.823 --> 01:01:12.163
Well, again, I think it depends, right? So most of the work that we've done

01:01:12.163 --> 01:01:14.903
has been what I would call small-scale collaborations.

01:01:15.423 --> 01:01:20.363
In fact, you know, I don't think you can have a group of people.

01:01:20.403 --> 01:01:23.603
I don't think you can have more than 18 people, right?

01:01:23.703 --> 01:01:26.823
I mean, 18 people. 8-0 or 18? 1-8 or 8-0?

01:01:27.063 --> 01:01:29.783
What was your number? 1-8. 1-8. 1-8.

01:01:30.763 --> 01:01:36.003
Okay. 18. Because that's how many people you can sit around like a table and

01:01:36.003 --> 01:01:38.723
have everybody see one another other when you're having a conversation.

01:01:38.983 --> 01:01:41.063
That's the maximum. You can't go more than that.

01:01:41.343 --> 01:01:46.383
So I think, you know, clearly there have been wonderful large-scale collaborations.

01:01:46.883 --> 01:01:51.203
CERN is an example of one. High Protocol, you know, most high energy physics,

01:01:51.263 --> 01:01:55.223
you know, has thousands of collaborators, the space program,

01:01:55.383 --> 01:01:56.483
all this kind of stuff, right?

01:01:56.723 --> 01:02:02.423
I think there's a difference between when you're trying to, when you don't actually

01:02:02.423 --> 01:02:06.363
know what you're trying to answer versus when you're trying to answer something.

01:02:06.703 --> 01:02:12.303
So I think that's part of the problem with some of these enormous brain initiatives,

01:02:12.543 --> 01:02:16.943
which I'm on the record of being very much against.

01:02:17.363 --> 01:02:23.523
I mean, I think these very top-down, large-scale initiatives where it's not

01:02:23.523 --> 01:02:28.083
quite clear what you want to know, they're very good at some things.

01:02:28.163 --> 01:02:33.663
They've generated a lot of tools. We now have a lot of different ways that we

01:02:33.663 --> 01:02:36.383
could acquire data and ways of analyzing data.

01:02:36.683 --> 01:02:40.503
Have they answered any basic, really important questions?

01:02:40.723 --> 01:02:43.663
I think you're right. To a large extent, they've been a failure,

01:02:43.703 --> 01:02:46.723
but that's because I don't know what they're.

01:02:47.938 --> 01:02:52.178
What they're studying. I mean, they keep saying the brain.

01:02:52.398 --> 01:02:56.538
I don't know, like what brain? Whose brain? Whose brain when?

01:02:56.858 --> 01:03:01.218
Whose brain in what context? The brain doing what? I mean, they act as though

01:03:01.218 --> 01:03:04.458
there's some static brain that we're going to understand.

01:03:04.718 --> 01:03:09.158
And so it's just the wrong question. I think around the right question,

01:03:09.298 --> 01:03:15.338
maybe humans can collaborate because there's this need to create a shared understanding, right?

01:03:15.598 --> 01:03:20.138
People collaborated to build giant cathedrals because they really wanted to,

01:03:20.238 --> 01:03:21.998
and it took, you know, generations.

01:03:22.338 --> 01:03:30.578
But is there enough in these kinds of things to make anyone really want to contribute?

01:03:31.738 --> 01:03:36.698
So we have, like, these more small-scale collaborations. Right.

01:03:38.058 --> 01:03:46.938
And I think, you know, we'll learn a lot from these large-scale collaborations,

01:03:47.718 --> 01:03:52.898
and maybe what we'll get is a better taxonomy of the kinds of questions for

01:03:52.898 --> 01:03:56.458
which they're suitable and the kinds of questions for which they're not.

01:03:56.658 --> 01:03:58.798
I mean, that might be a part of the learning.

01:03:59.018 --> 01:04:03.198
But now, in some sense, this isn't defined. The last question that I would like

01:04:03.198 --> 01:04:08.238
us to look at is that, okay, I give you access to the latest CRISPR technology.

01:04:08.238 --> 01:04:12.618
You can genetically re-engineer humans, what's the one thing you would change

01:04:12.618 --> 01:04:16.158
in humans so that we'd be better able to really collaborate?

01:04:19.678 --> 01:04:28.118
I don't know. Because, again, in my experience, and maybe I live a very sheltered

01:04:28.118 --> 01:04:34.078
existence, but in my experience, most humans do want to collaborate with one another.

01:04:34.238 --> 01:04:40.518
In fact, I'm always, in many ways, amazed that people will come to a workshop.

01:04:42.203 --> 01:04:49.223
Because they're invited and contribute as good citizens who come in goodwill

01:04:49.223 --> 01:04:57.423
and share their information and want to work together and oftentimes leave having

01:04:57.423 --> 01:05:00.823
made a new friend or a new collaborator.

01:05:01.063 --> 01:05:06.603
I mean, I feel it's more natural in many ways to do it.

01:05:06.643 --> 01:05:11.203
I think it's the the perverse incentives that we've set up in many of our systems

01:05:11.203 --> 01:05:14.263
that are what discourage collaboration.

01:05:14.683 --> 01:05:22.183
I mean, you know, the rewarding of faux individual contributions, right?

01:05:22.423 --> 01:05:29.363
The, I mean, you know, tenure committees saying, you don't have enough single-authored publication.

01:05:29.823 --> 01:05:33.483
A person saying, well, because I work as part of a group. I mean,

01:05:33.483 --> 01:05:39.963
I can't just Just tell my collaborators to forget it. I need a single-offit publication.

01:05:40.623 --> 01:05:44.823
So, I mean, I think most people want to work together.

01:05:45.823 --> 01:05:51.123
I think science has selected, to some extent, sociopaths who don't want to work

01:05:51.123 --> 01:05:53.923
together because the reward system rewards them.

01:05:54.123 --> 01:05:59.463
But I think most people want to share. I think most people want to learn from

01:05:59.463 --> 01:06:05.683
one another. And so I'm not, I'm, I ha I'm more hopeful actually that, um.

01:06:07.734 --> 01:06:12.494
That creating a shared vision is really what's, what's important.

01:06:12.894 --> 01:06:18.854
And no, I think that's, you know, we have this, we have our newest collaborative

01:06:18.854 --> 01:06:21.234
is a collaborative on collective memory.

01:06:21.394 --> 01:06:27.754
So cultural collective memory, right. And, and what we're trying to understand is exactly this point.

01:06:27.874 --> 01:06:35.034
How is it that we as individuals share a cultural, our cultural knowledge?

01:06:35.134 --> 01:06:38.854
How do we build these, you know, collective memories?

01:06:39.494 --> 01:06:41.134
How do we act on them?

01:06:41.994 --> 01:06:44.974
And I think some of the resistance that we're seeing right now,

01:06:45.094 --> 01:06:50.534
particularly in the U.S., where our populations have become quite polarized.

01:06:51.534 --> 01:06:54.794
Is that we don't have this shared vision anymore.

01:06:55.174 --> 01:06:59.134
So it's that your vision is taking away my vision.

01:06:59.294 --> 01:07:03.634
And what I think we have to get back to is this, how are we all contributing

01:07:03.634 --> 01:07:09.574
to a shared vision? And I think if we could do that, I think you would see this,

01:07:09.734 --> 01:07:13.694
at least a diminution of some of this polarization.

01:07:13.854 --> 01:07:17.494
I think what many people are really afraid of is that they don't see themselves

01:07:17.494 --> 01:07:21.274
in the future. And I think that's something that we could do.

01:07:21.414 --> 01:07:28.154
So that's where I think the heart, maybe if I could fix anything with CRISPR,

01:07:28.374 --> 01:07:34.854
it would be the scarcity mindset gene. Is there a scarcity mindset gene?

01:07:35.134 --> 01:07:38.794
That somehow you getting something means I have to get less.

01:07:38.994 --> 01:07:43.894
So if we could fix the zero-sum, we need to fix the zero-sum gene,

01:07:44.794 --> 01:07:50.954
if we could identify that and CRISPR it, maybe we could solve a lot of problems. Fantastic.

01:07:51.314 --> 01:07:53.934
Susanne Fitzpatrick, thank you very much for this conversation.

01:07:54.814 --> 01:07:59.974
Hi, you listened to one of our podcasts in the series on collaboration produced

01:07:59.974 --> 01:08:02.934
by the Ernst Trumman Forum and the Convergent Science Network.

01:08:03.534 --> 01:08:06.554
You can find more episodes on our website.