Ever wondered how your genome could be related to your social intelligence? Or which foods might affect your sleep patterns? Genomera is an online platform that’s making it easy for community members to transform these kinds of questions into crowd-sourced health studies.
As CEO of Genomera, Greg Biggers has spent a lot of time thinking about the design and psychology of community participation. And he's placing bets that online community can make meaningful progress where traditional health science can be cumbersome and slow.
Let’s start with an overview of what Genomera is trying to do.
Sure. We have two big goals. One of them is to more evenly distribute and democratize health sciences. We want to give any individual a voice in health sciences and let them influence or actually set the agenda, so they can use evidence-based science to find answers to the questions that matter most to them.
Goal number two, which is a bit related to that, is that we want to bring the process of doing health science studies and clinical trials into the Internet age. The scale of these trials should not just be through this tiny little bottleneck that Pharma spends lots of money on. We want to break that open and bring massive scale to health science.
In some ways, we want to be to health studies what something like WordPress or Tumblr is to a blog. We're the infrastructure that makes it possible, but the actual work is because the people are doing it.
What kinds of people do you see joining Genomera?
We’re still in the early stages of our online product and community. I think we'll see this change a little bit over time, but at this point, the people coming right now, broadly speaking, are coming from two different places.
1) People who have a health problem that they want to solve. They’re either very curious, or they feel they've finally found a place where they think they can get that done.
2) People who have some relational connection to the first group. They were drawn to Genomera because an existing user said, "Hey, we need more people to help us do this. You seem to care about this, too. Can you come join us?"
Much of the science happening at Genomera is being driven by what professionals would call “lay scientists.” We're serving some classically trained scientists as well, but we're much more open about who we think can be a "scientist."
We do see some people express reluctance to put on that mantle of scientist, but we work hard to help them overcome some of that reluctance because we think it's artificial. For the Genomera movement to really work, we need people to self‑identify as ones who are engaging in credible science together. So that’s a very, very important to us, and it’s a barrier that's beginning to fall.
Do you think that barrier is reinforced by the world at large? For example, have you met with any criticism from the more traditional scientific community?
The very first press about Genomera was actually in a very traditional scientific journal. It was "Nature: Medicine," and when the journalist from "Nature: Medicine" contacted us about doing this story, we tried to talk him out of it, because we were sure that Genomera was not ready for scrutiny from that audience yet. We thought that eventually we would be, but right then, the first time we had done this, we did not think was the time.
I think we were worried about being perceived as just another Internet upstart, upending what we thought they cared about. We thought they would feel threatened by how we were democratizing science, all these lofty things that filled our heads.
But as it turns out most of the professional scientists we talked to, instead of wanting to bomb us, wanted to hug us. Most scientists got into their field to make a difference in people's lives. They're as frustrated as consumers are that we're not making progress more quickly. They feel this esprit de corps with us.
Now, with a little bit of time to reflect on that experience, we realize that it was a bit naive of us to expect that they were going to hate us. Actually, it was us not treating them with high enough esteem rather than the other way around. Because they want to make the same difference that we all do.
We want to bring the process of doing health science studies and clinical trials into the Internet age.
Have you found particular ways that your community might differ from the more traditional scientific establishment?
Yeah, occasionally we'll see someone come to us with an idea for a study they would like to organize. They start documenting what the study should be about, and sometimes their first draft really looks too much like an 80‑page paper you would see in a science journal. There's nothing automatically wrong with 80‑page papers in science journals, but it's not usually a very accessible form for Internet engagement.
We're seeing that when you use flowery language and the scientific passive voice and anonymity, and you don't let any element of your personality come through in the writing you're doing, people tend to wait longer before they're going to get involved. That's something we think is related to trust.
If your photo is just a blacked‑in profile shot of you as an anonymous avatar figure next to a username that doesn't make any sense to me, and your opening paragraph supposedly inviting me to come participate has a bunch of eight‑syllable words that I don't understand. Well, I'm much less likely to take the next step and say, "Oh, let's find out what this particular study community is doing."
Organizers need to create a welcome mat for the first experience that explains in understandable language what the community is going to study, or a little bit about why the study is important to the organizer. When that happens, people are much more likely to read further, and eventually will read a little bit of the scientific brief.
There is real science going on here, but part of the innovation our community has arrived at is doing this in a relational way because that's necessary to get many more people involved.
We think at the core of that actually, is trust and relationship.
To build those relationships, I can see how it would be really important for users to feel free to… be themselves?
Yeah, we’re seeing that when we encourage organizers and participants in our community to be themselves rather than acting as an image of how they think someone in that role is supposed to act – we think we see a material difference in the engagement from the rest of the community, in a given study, and we think that's linked to trust.
I'm saying the word "think" a lot right now because we're early‑stage, and we have not had the chance to apply much rigorous behavioral science to a lot of the things going on under the covers, but we have hypotheses and we have observations, and we make inferences now and then.
How else have you gone about fostering and building this community?
In the very early days of experimenting with Genomera, we saw engagement and the level of collaboration skyrocket once we turned on a more informal way of interacting – conversing, chatting, replying to one another, posting insights, posting interesting articles, things like that.
That was actually a really significant lesson for us in this endeavor. There’s collaboration that's very structured around the specific mission of why people are together in a group. But then it was also really necessary to add this social collaboration, which, just to a trained scientist's eye, might be superfluous.
We found having the two together is why it works so well. There's a way in which we could probably take a little bit of credit for having discovered that people want to work this way and providing that for them. A humbler way to look at the situation is just that there are human beings involved, and so of course they're going to want to collaborate.
It’s about more than just plugging someone in as an automaton to follow a task in this piecework world. It’s also about letting them express themselves as a human, as someone who has relationships with others, and that helps users stay engaged in the work.
Are there other lessons you’ve learned about what it takes to make a community successful?
Yes, definitely. As we design our product, we constantly remind ourselves of a tension that we refer to as “canvas and frame,” which I can talk a little bit about.
Individuals who work collectively need to be given a space that invites them to create. There's a tremendous amount of work to get that right, to create the right metaphorical canvas for people to create these health studies and to engage them.
I think that most writing and public speaking that you see about collaboration is mostly about that. How do you get this canvas right? What's going to encourage people to do their part?
But we've learned that the frame is equally important. The frame represent the constraints that keep people focused on the task or mission at hand. It's not just an open canvas. It's a canvas that has a border, and that border limits the choices people have to make in order to contribute.
It turns out that in daily life most people don't want eight choices. They want two or three, or maybe just one. We have to do
the work of discovering what constraints will help people be most creative on that canvas.
When we're designing Genomera, we go through a bunch of ideation and brainstorming. Probably the most time‑consuming portion of the design phase for our product is removing things. We go through exercises like, "OK, name people that we know of in our community that would want it to be like that." We believe that it’s not worth potentially ruining an easy experience for 90 percent of the people, in favor of a small group who might find a new feature invaluable.
This notion of canvas and frame, of openness and constraint, and holding that tension, is a really important principle to us in getting people to move toward collective action.