Welcome to Episode 124 of The Digital Life, a show about our adventures in the world of design and technology. I’m your host, Jon Follett, and with me today is Madeleine Price Ball, who is the co-founder and principle investigator of the Public Data Sharing Study. Madeleine, welcome to the show.
Hi. It’s great to be here.
For our podcast topic this week, we’re going to chat with Madeleine about Open Humans, which is an online platform that enables people to, not only, connect and participate with research studies, but also receive data back from the scientists conducting these studies. Madeleine, let’s jump right into it. How did Open Humans … How did that project get started?
Open Humans is kind of a spin-off, or an outgrowth, of the work that me and Jason Bobe with done with the Personal Genome Project, which was founded by George Church, and also with the GET conferences. GET stands from Genome, Environments and Traits. We draw from these experiences where we’ve been working with an amazing group of participants in these research studies that are really interested in giving their data to research.
In the Personal Genome Project, the study is founded on the idea that genome data is personal and identifiable, but that we can still recruit people who are interested in sharing that data, plus health data, knowing the dangers of identifiability. There’s still some data astronauts out there who are interested in sharing their data, and it turns out that there’s a lot of people, there’s over 4500 people now that have signed on to the PGP.
At the GET conferences, we’ve had a bridge that’s formed by bringing in researchers that want to work with these people, and want to study them. Open Humans is about bringing these people and researchers together, and making the data that the research studies generate portable between them, so that people can get their data back from a research study and share it with other researchers, or choose to share it publicly.
How did this project genesis happen? I know you went through a number of grant applications and then there was some huge momentum that came from two rather large awards. Could you tell us a little bit about that, and how that happened?
It really has its roots in working together with Involution Studios before those awards, kind of brainstorming what is the Personal Genome Project supposed to be, how should it grow, what should it look like? One of the things we thought it should be is, sort of, this place that’s like a data hub, where people can bring data in from research studies and be sharing it publicly as a resource, and with researchers, and that name, Open Humans, was generated and we had a lot of ideas about that.
Jason has had some ongoing relationships with people at private foundations that are interested in this stuff. In particular, the Robert Wood Johnson Foundation. We talked to them and drew up a draft, and a grant proposal, that solicited, sort of, this is what we want to do, are you interesting in funding it?
How does it work for the Open Humans members, and on the other side of the coin, for the researchers? If I were to become a Open Humans member, what’s the process that I go through for signing up, and then getting my data into the system?
Right, so right now members can just go onto Open Humans and create an account. One question would be, why might you want to create an account? You can become someone who is receiving and donating their data to research in an ongoing fashion. We have a series of research studies right now, but we’re going to keep adding more research studies, and we’re going to keep adding me ability to import data from other sources, like Fitbits and phone apps that track your run, and genetic data from various genetic data providers, so we keep growing that.
You want to make an account, you go to openhumans.org, and you become a member. One of the things we’re doing is we give people their public profiles, and you can pick any user name you want, as long as you’re not pretending to be someone else. You can be yourself. You can use your real name, or you can pick a fake name. You can pick a name that maybe only your friends know. It’s really up to you how you share that. That’s really how everything goes, is it’s up to you what you want to share.
Once you’re in, there’s a couple different research studies we have that we encourage people to connect accounts with, and then go join. The Personal Genome Project is a big one, that’s where we’re from. You can go join their study. American Gut is an exciting microbiome project, that’s based in Rob Knight’s lab at UCSD, and Go Viral is a project Rumi Chunara has, which I think is really fun, is you get to profile the viruses that you have when you’re sick.
You find out if you really had the flu or not, and what you actually got, which I think is just a fun sort of data to get back from a study. It’s a silver lining on getting sick.
Yeah, if there is a silver lining. Now, on the research side, I understand that there are a number of things that make Open Humans unique, in terms of how the researchers can interact with the data that they get from Open Humans participants. Could you tell me a little bit about that?
What we enable is researchers to really reuse data that other studies have created, or that participants or members have brought into the Open Humans platform. A member of Open Humans might import their data from Runkeeper, which is an app that you can use to track your GPS while you run, and Rumi Chunara has a study on Open Humans that you can donate that data to, an so she can ask you, “Are you willing to share that with me,” and you could say yes.
She’s trying to understand how the geography, and how the structures of streets, like whether there’s pavements or one way streets, or stop lights, how that affects people’s exercise habits when they’re running and doing cycling and stuff.
That sort of interaction, where you can directly say, “Here’s a study. Give my data to it.” In addition, we also have a public data sharing feature, where you can choose to say, “Hey, here’s all of my runs. I’m happy to share that publicly. Here’s the maps of me running.” If someone asked to do research on that, they can.
What’s really interesting about this, is that data like genomes and maps are not easily released by the companies that hold them, because it’s highly identifiable data. Location data, you might start your run at home or at work, and so that piece of information is considered too sensitive for a company like Runkeeper to just put out their in public, but a lot of people decide that they don’t really mind having that public, so they can share that publicly, and it becomes this research that all sorts of people could build from that you may not expect someone might build a visualization from all the data that people make public. It’s very fun.
Yeah. Just to be clear, this is not the norm for research and data sharing. This is very much disruptive, in a lot of ways, to the research ecosphere. Is that correct?
Yeah. What’s really true right now in research, is that people do not see their data. They’re given a consent form, maybe by a doctor in a doctor’s office, and they sign it, and they’d love to contribute, but they never see the data that comes out of it. Vast majority of genomes that are being sequenced right now, people are not getting access to that data. They’re not able to bring it to another person to look at, look at it themselves, share it with another research study. It’s not being shared. Then the research studies kind of lock that data up.
The idea that we connect the participants in this way and give them data back, and let them play with it, is completely new. Then the idea that people can choose to make their own data public, just like they can make that own decision. That’s not something other people are enabling. We’re very respectful. It’s entirely up to the participant what they want to make public or not, but so far, nobody’s been even giving people that option.
Yeah, you know, that seems mind blowing in the 21st Century, that there wouldn’t be an easier way to do that. In learning about your project, the fact that you’re sort of pushing this, it’s wonderful for the researchers, but it still seems, at least from a data sharing aspect, it really seems surprising, to me at least, that there’s no easy way to donate data and get data back. What has been the reaction of the research community, generally, to the Open Humans platform, as you’ve rolled it out?
Researchers tend to be pretty positive, especially when they start putting the participant’s shoes on, if they start wearing the participant’s shoes, then, of course, they start getting really interested in seeing data back from research studies
That’s part of what really gets the researchers engaged is they’re not just researchers anymore. They’ve also become participants in other studies. The researchers face a lot of hurdles right now, in the sense that giving data back to participants is just not done, which means that they face logistics hurdles of “How do I do this?” They also face, sometimes, some hard conversations with their ethics review boards, because everything has to be approved by their institution, and then the institution says, “We’ve never done that before, what are you talking about? Letting people take their data out from your study. You’re letting them see it?”
A lot of interesting conversations are happening, and I think a lot of nebulous fears are getting addressed. They’re not really grounded in anything, it’s just a new thing for them.
Interesting. I imagine that you have … You have these three research studies, initially, that people can participate in. Do you have any in the pipeline that you could talk about, or are those under wraps while they’re being discussed?
Since nothing’s done until it’s done, …
… I don’t really want to say anything in particular.
We definitely have more stuff that’s getting at both the genetic and environmental components around people, and bringing in that new research data. A lot of this stuff, we’re trying to center around the Personal Genome Project people, because we know that they’re enthusiastic contributors, and they’re a great set of people to build data around, but we really welcome new members who want to join this movement of becoming someone who’s contributing in an ongoing way.
I know this question must come up quite a bit, but in this age of data breaches in the news, seemingly every month there’s a new story about some kind of hack, what, in terms of security, is Open Humans doing to keep it’s members’ data secure?
Right, we’re really aware of that. We pay a lot of attention to this stuff. I pay as a member of the Electronic Frontier Foundation, so I care a lot about respecting people’s right to decide when their data is shared, and not just sharing all of it by accident, right? We use encryption for the website, so that it defaults to secure HTTPS, so if you try to use it in some other way, it’s just going to push you back into encryption.
We do standard security practices for websites, which is stuff like hashing passwords, and also, we keep our software up to date. This is just important to do, because there’s standard software that addresses all of these known ways to attack websites, and keeping that software up to date is just key, because people discover new things, and you update your software and it will fix that thing.
We do all that, but there’s one more thing that I think is really key that we didn’t anticipate, but that we ended up doing, and that is that we end up giving research studies that are also operating online, a lot of really important advice about doing all of these things that I just mentioned.
A lot of studies, the most sensitive data they might be collecting is not the microbiome data, but someone’s password. If you have someone’s Gmail, email, and their password, and you haven’t encrypted it, they might have used the same password that they use for Google, and in that case, that’s a really sensitive piece of information.
There’s ways to handle passwords that are highly secure, that we can teach research studies that we work together with to use, so we help protect our members, not just on our own site, but also by helping get better protections with research studies and how they’re managing their participants.
Yeah, that sounds like a very good additional benefit for researchers, that they get that consulting advice from the Open Humans Project. Madeleine, to kind of wrap up this interview, what’s on the horizon for Open Humans? What are you excited about? What’s happening in the next 6 to 12 months that you could tell us about?
Well, we’re going to be having another GET conference at the end of April, next year, and I’m really looking forward to that, because I think that’s going to be the conference where we really bring together Open Humans members and researchers that want to work together with them. We haven’t decided exactly how we reach out to both communities, but this is a really exciting opportunity, both for people who might think they want to become one of these members, and maybe attend this conference, and meet all of these researchers, and this is going to be in Boston on April 26th and 27th.
The researchers, any researchers who might be interested in running a little study that works together with these people that already have data that they can share from other sources. They’re just super enthusiastic. We’d love to see them there.
Listeners, if you’re interested in donating your data to science, check out openhumans.org, and remember that while you’re listening to the show, you can follow along with the things we’re mentioning here in real time. Just head over to thedigitalife.com. That’s just one L in thedigitalife, and go to the page for this episode. We’ve included links to pretty much everything mentioned by everybody, so it’s a rich information resource to take advantage of while you’re listening, or afterward, if you’re trying to remember something that you liked.
If you want to follow us outside of the show, you can follow me on Twitter @jonfollett. That’s J-O-N F-O-L-L-E-T-T, and of course the whole show is brought to you by Involution Studios, which you can check out at goinvo.com. That’s G-O-I-N-V-O.com.
Madeleine, how can listeners get in touch with you?
Open Humans has a blog that’s linked to on it’s website, and also has a Twitter handle, that’s openhumans.org, and then if you want to get in touch with me personally, I’m on Twitter too, and my handle is madprime, M-A-D-P-R-I-M-E, and I tend to respond on Twitter, if you tweet me. I’m happy if you want to get in touch there.
Terrific. Madeleine, thank you so much for coming on the show today.
It was great to talk with you.
That’s it for Episode 124 of The Digital Life. I’m Jon Follett, and we’ll see you next time.