Four days ago Facebook announced it is killing Moves, a smartphone app that lets you collect your continuous GPS data. People could download their location data, donate it to research, and connect it to other apps.
Soon Moves will be dead – and there is no obvious replacement. But there could be.
OpenPaths is a similar tool, developed seven years ago by a team at the New York Times Research & Development Group. It had an ethos that matched our own – it empowered its users, gave them access to their data, and the ability to share with projects. The NYT team handed OpenPaths to an academic group at UCSD. And late last year, UCSD gave it to us.
OpenPaths was like Open Humans before we existed – and by some amazing act of fate, we have inherited it. It could be something better than Moves: a nonprofit, open source tool that strives to empower the community that maintains it.
But OpenPaths is broken, and we need help to fix it!
With an enormous thank you to all our candidates – and the members that voted – I’m thrilled to share our three new members of the Board of Directors for Open Humans Foundation!
Full vote tallies of the community election were as follows: Dana M Lewis (92), Alexander (Sasha) Wait Zaranek (60), Embriette Hyde (53), James M Turner (33), Katarzyna Wac (28), Richard Sprague (23), Chris Gorgolewski (16)
We are also thrilled to introduce two new board-elected directors!
Board-elected Seat: James Turner
James is one of the earliest and most active members of the Open Humans community, and has been profiled on our blog as well! Having joined through participation in the Personal Genome Project, James went on to create some of the first projects in our site – including an Apple Health import app that has been used in downstream academic research. In addition to his long commitment to this community, James brings valuable practical experience in managing nonprofit organizations, having created and managed his own charitable 501(c)3 for several years.
Board-elected Seat: Chris Gorgolewski
Chris is an academic in the field of neuroscience, interested in expanding the use of Open Humans among traditional researchers. Chris has promoted neurological research data sharing through his work with Neurovault, OpenNeuro, and reusable data sharing language for consent forms. Chris brings to the board a new facet of research, and an interest in promoting the use of Open Humans in studies — including the return of valuable data to participants to enable both individual access as well as re-use in new research.
Finally, I want to thank the candidates who volunteered to become members of our board. Candidates took time to communicate with us and with the community, and we are honored by the visions you shared with us. There were more excellent candidates than we had seats to fill! But there will be seats again, and we hope you continue to be part of Open Humans as some of our most brilliant members, colleagues, and advocates.
At our annual meeting on March 26, two board-elected seats will be determined from these candidates. And following this, members of Open Humans will be invited to elect the third “community” seat! We invite you to learn more about the candidates by reading the introductions and further links below.
Benyam Alemu
About me
I am a national nonprofit leader, educator and researcher. I bring a
fascination for the applications of computation in biology –
through both bioinformatics and digital health to a an
entrepreneurial background.
My experiences range from leading companies, serving on institutional
steering committees, designing university coursework, creating
research experiences and influencing educational policy.
My vision for Open Humans is for it to also be used as a tool used by
other institutions to expose graduate students, underclassmen and
K-12 students alike to participatory methods of initiating and
conducting collaborative computational research.
I have always had a passion for science, especially genetics. I ended up in software instead, but have continued to follow the field as an adult. I joined the Personal Genome Project in January 2011, and have been an activate participant ever since.
I organized and ran the PGP Participant’s Forum. I have also created several tools for the Open Humans API, including the HealthKit Uploader app.
I also have a second career as a freelance writer. I have written for publications such as the Christian Science Monitor, and have also written 3 books on software development. I also am the president and chairman of the board of a 501(c)3 public charity that has raised over $250,000 for cancer research, among other causes.
I think that I could leverage both my experience in journalism and in fundraising to assist the board in it’s duties. I would like to see OH work to expand the number of participants with active datasets so that the statistical power of the data would be increased.
I am passionate about open source and open science efforts. I’m one of the creators and the first users of an open source artificial pancreas (e.g. hybrid closed loop) system to make life with type 1 diabetes easier. My skillset ranges from non-traditional technical skills to communication and strategy. I’m dedicated to taking what we’ve learned in the diabetes community & sharing these lessons learned with all communities. To that end, I’m also a RWJF grant-funded principal investigator, studying the processes of patient-driven and patient-led innovation research, with goals around scaling effective processes and collaborations between traditional and ‘new’ stakeholders. I’ve used OpenHumans for ~2 years now, and believe it plays an integral role in enabling individuals to share data and facilitate new research efforts. My vision is to help support and scale the organization to continue to meet the needs of these new stakeholders and communities.
I am an entrepreneur, open source advocate, and PGP participant. My interest in open humans centers around the profound impact of genetics on our future as a species. As a board member of the Human Rights Foundation, and with organizations in life and health insurance, I am also deeply interested in the societal impact of sharing information which may allow third parties to predict our traits available in the public domain. I believe my primary contribution, aside from experience in board governance, would be to offer the board due diligence capacities in better understanding these risks and opportunities and communicating them to external stakeholders in stewardship of the foundation. More details and background are available on my website.
I am head of quantified biology at Veritas Genetics, the first company to introduce whole genome sequencing and interpretation to consumers and their physicians for under $1,000. My current research is focused on the delivery of real-time, biomedical insights from massive data sets, spanning millions of individuals across collaborating organizations, eventually encompassing exabytes of data. I am also a co-founder of the Harvard Personal Genome Project.
My hope is that Open Humans becomes a central, global hub for participatory research and participant led data sharing much as Wikipedia has become a hub for sharing facts. Specifically, I will use my relationships with the Global Alliance for Genomics and Health (GA4GH), the NIH data commons pilot, the NIST “Genome In a Bottle” reference material consortium, and the global Personal Genome Project (PGP) organizations to further the integration of Open Humans with other local, national and international biomedical data sharing efforts.
My passion for sharing science with the public started in graduate school, when I realized that scientists do a bad job of explaining their work to the broader community. This is critical — public perception of science has downstream effects on funding. A major roadblock is a misunderstanding of the scientific process and timeline. Citizen science projects help fill this knowledge gap by giving people the opportunity to contribute to science and experience it first hand. One of my most fulfilling experiences was managing the American Gut Project, which is part of Open Humans. Open Humans encourages people to support citizen science, and the dataset integration it promotes is critical for making precision medicine a reality in healthcare. My vision for Open Humans includes establishing educational efforts such as more regular and varied blog posts, short video blogs, and online courses — including a hands-on course on how to interpret scientific papers.
For decades, I’ve managed consumer-focused software products at places like Apple, Microsoft, and numerous startups because I believe technology is a great equalizer, transforming society by putting powerful computing tools within the reach of everyone. An early and active fan of OpenHumans, I think science too can be transformed if we make personal health and self-tracking data openly accessible to all curious people.
Like most OpenHumans users, my background is outside the world of professional science or academia. As a former product developer, big company exec, and entrepreneur, I want OpenHumans to appeal to all ranges of expertise, in every part of the world, because the ability to do science shouldn’t depend on your background or your current skill level. To do this, I’d like to help OpenHumans (1) improve its visibility through world-class marketing and promotion, (2) expand internationally and (3) remain the best place for sharing, exploring, and analyzing humans.
Katarzyna Wac is an Associate Professor of Computer Science at University of Copenhagen (DK) University of Geneva (CH), affiliated with Stanford University. Her research appears in more than 100 to date peer reviewed proceedings and journals in computer science, human-computer interaction and health informatics. She is a (co)-PI in several European, Swiss and Stanford Medicine projects. Dr. Wac leads Quality of Life Technologies lab researching how emerging sensor/actuator-based mobile and wearable technologies can be leveraged for a personalized assessment of the individual’s behavior and Quality of Life (QoL), as they unfold naturally over time and in context, and improvement of the latter. The vision for Open Humans is to enable individual’s short-term behavior and long-term QoL assessment and improvement based on the crowdsourced efforts of the donors, social and behavioral, as well as data scientists and practitioners leveraging the results for better QoL-enabling services.
My life’s mission is to accelerate the progress of science by making as much data accessible to as many researchers as possible. Most of my work has focused on brain imaging data. I built a platform for sharing results of neuroimaging experiments (https://NeuroVault.org), as well as one for sharing raw neuroimaging data (https://OpenNeuro.org – formerly known as OpenfMRI). I have also been promoting ethical data sharing by providing ready to use text for participant content forms (http://open-brain-consent.readthedocs.io/en/latest/ultimate.html). I would work with the Open Humans Foundation to help integrate it with existing open neuroimaging databases and getting their participants involved in additional follow-up data collection via the Open Humans platform.
I have been involved in the world of bioinformatics for decades. I have a master’s degree in Medical AI. Most of my work experience has been in bioinformatics rather than medical informatics, but I would love to get involved with something more directly relevant to health.
I have chaired BOSC (the Bioinformatics Open Source Conference) for the last 8 years. Under my leadership, BOSC has flourished and become more diverse in both content and attendance. I am also a board member for the Open Bioinformatics Foundation.
In addition to helping OHF communicate using social media and other online mechanisms, I’d like to help organize events to bring OHF community members together to exchange ideas and meet face-to-face.
Our nonprofit organization, Open Humans Foundation, will be having its annual election next month for its Board of Directors. Three of our nine seats will be up for election and, while current board members are invited to re-apply and continue their service, not all are planning to do so.
I’m also delighted to share that we have restructured our organization’s governance to create “community seats”. One of the three seats this round will be chosen by Open Humans members!
Anyone may apply to our board. The process involves a self-nomination, and nominees should be seconded by a current member of the Board of Directors.
Being a director of this organization is a position of trust. While I manage day-to-day operations, the board is our highest tier of governance – our ultimate decision-making authority. Many board members also contribute to the organization as officers, e.g. as secretary or treasurer. As Executive Director, I serve at the board’s behest.
You can learn more about our organization’s governance – including current board members, bylaws, and standing rules – by visiting the organization website here: http://openhumansfoundation.org/
We expect our board-elected seats to be determined at our annual meeting on March 26, and we look forward to holding a community election following this. Please stay tuned!
Sincerely,
Mad Price Ball
Executive Director, Open Humans Foundation
Genevieve Genome Report is a tool that takes genome, exome, or 23andMe data and produces a report comparing your genome to the “ClinVar” database – a public compilation of publish reports and databases.
This might uncover reports about to rare variants with potentially dramatic effects: people typically carry several “recessive diseases”, and this report might uncover some of yours. But it might also uncover mistakes in the literature! Research is messy, and so is this. To help everyone sort through the evidence, Genevieve also invites users to edit collaborative notes regarding reported effects.
As such, the tool is not a clinical tool, no more than Wikipedia is! It’s open source, freely shared, and intended for collaborative learning. It’s my own personal project – and I’ve extended it to enable private data analysis, and empower more folks to explore their data.
Health data is important to individuals, including myself, and I think it’s important that we as a society find ways to allow individuals to be able to chose when and how we share our data. Open Humans makes that very easy, and I love being able to work with the Open Humans team to create tools like the Nightscout Data Transfer uploader tool that further anonymizes data uploads. As an individual, this makes it easy to upload my own diabetes data (continuous glucose monitoring data, insulin dosing data, food info, and other data) and share it with projects that I trust. As a researcher, and as a partner to other researchers, it makes it easy to build Data Commons projects on Open Humans to leverage data from the DIY artificial pancreas community to further healthcare research overall.
Wait, “artificial pancreas”? What’s that?
I helped build a DIY “artificial pancreas” that is really an “automated insulin delivery system”. That means a small computer & radio device that can get data from an insulin pump & continuous glucose monitor, process the data and decide what needs to be done, and send commands to adjust the insulin dosing that the insulin pump is doing. Read, write, read, rinse, repeat!
I got into this because, as a patient, I rely on my medical equipment. I want my equipment to be better, for me and everyone else. Medical equipment often isn’t perfect. “One size fits all” really doesn’t fit all. In 2013, I built a smarter alarm system for my continuous glucose monitor to make louder alarms. In 2014, with the partnership of others like Ben West who is also a passionate advocate for understanding medical devices, I “closed the loop” and built a hybrid closed loop artificial pancreas system for myself. In early 2015, we open sourced it, launching the OpenAPS movement to make this kind of technology more broadly accessible to those who wanted it.
You must be the only one who’s doing something like this.
Actually, no. There are more than 400+ people worldwide using various types of DIY closed loop systems – and that’s a low estimate! It’s neat to live during a time when off the shelf hardware, existing medical devices, and open source software can be paired to improve our lives. There’s also half a dozen (or more) other DIY solutions in the diabetes community, and likely other examples (think 3D-printing prosthetics, etc.) in other types of communities, too. And there should be even more than there are – which is what I’m hoping to work on.
So what exactly is your project that’s being funded?
I created the OpenAPS Data Commons to address a few issues. First, to stop researchers from emailing and asking me for my individual data. I by no means represent all other DIY closed loopers or people with diabetes! Second, the Data Commons approach allows people to donate their data anonymously to research; since it’s anonymized, it is often IRB-exempt. It also makes this data available to people (patient researchers) who aren’t affiliated with an organization and don’t need IRB approval or anything fancy, and just need data to test new algorithm features or investigate theories.
But, not everyone implicitly knows how to do research. Many people learn research skills, but not everyone has the wherewithal and time to do so. Or maybe they don’t want to become a data science expert! For a variety of reasons, that’s why we decided to create an on-call data science and research team, that can provide support around forming research questions and working through the process of scientific discovery, as well as provide data science resources to expedite the research process. This portion of the project does focus on the diabetes community, since we have multiple Data Commons and communities of people donating data for research, as well as dozens of citizen scientists and researchers already in action (with more interested in getting involved).
What else does Open Humans have to do with it?
Since I’ve been administering the Nightscout and OpenAPS Data Commons, I’ve spent a lot of time on the Open Humans site as both a “participant” of research donating my data, as well as a “researcher” who is pulling down and using data for research (and working to get it to other researchers). I’ve been able to work closely with Madeleine and suggest the addition of a few features to make it easier to use for research and downloading large data sets from projects. I’ve also been documenting some tools I’ve created (like a complex json to csv converter; scripts to pull data from multiple OH download files and into a single file for analysis; plus writing up more details about how to work with data files coming from Nightscout into OH), also with the goal of facilitating more researchers to be able to dive in and do research without needing specific tool or technical experience.
It’s also great to work with a platform like Open Humans that allows us to share data or use data for multiple projects simultaneously. There’s no burdensome data collection or study procedures for individuals to be able to contribute to numerous research projects where their data is useful. People consent to share their data with the commons, fill out an optional survey (which will save them from having to repeat basic demographic-type information that every research project is interested in), and are done!
Are you *only* working with the diabetes community?
Not at all. The first part of our project does focus on learning best practices and lessons learned from the DIY diabetes communities, but with an eye toward creating open source toolkit and materials that will be of use to many other patient health communities. My goal is to help as many other patient health communities spark similar #WeAreNotWaiting projects in the areas that are of most use to them, based on their needs.
How can I find out more about this work?
Make sure to read our project announcement blog post if you haven’t already – it’s got some calls to action for people with diabetes; people interested in leading projects in other health communities; as well as other researchers interested in collaborating! Also, follow me on Twitter, for more posts about this work in progress!
I am thrilled and honored to announce an expansion to the Open Humans team!
Bastian Greshake Tzovaras will join us starting November 1 as Director of Research at the Open Humans Foundation. He is funded by a fellowship from the Open Humans Foundation to support his work pursuing our shared vision of advancing citizen science and open approaches to health and human subjects research. Before Bastian starts, I’d like to to tell you more about him – even if you think you know him well!
To many Bastian is best known for openSNP, a project he co-founded in 2011 with Philipp Bayer – and joined soonafter by Helge Rausch. OpenSNP invites individuals to donate and publicly share their genetic data (e.g. from 23andMe and AncestryDNA). OpenSNP members can also contribute additional data, including crowd-sourced trait surveys. It is a community and platform that matches the themes of the Personal Genome Project and Open Humans.
I think OpenSNP has been an impressive success. On a small crowd-funded budget, Bastian, Philipp, and Helge helped more than 3,700 individuals to publicly share their genotyping data. I believe this is more publicly shared human genotyping data than all other projects combined!
Finding some way to join forces with Bastian seemed obvious and overdue. And so, I reached out. Because for Open Humans to succeed as a shared vision, it needs more than just me.
In summary, OpenSNP was just one facet of Bastian’s prolific and wide-ranging dedication to open approaches and social change in how we perform research. His vision matches that of Open Humans, and his strengths complement mine.
Bastian’s work with Open Humans will focus on the following areas: sustainable approaches for citizen science and patient-engaged research, collaborations and outreach for participatory research projects, mentorship and support for projects, and academic engagement via collaborations, publications, and meetings. I suspect he’ll get involved in almost everything, as his skills and interests are so diverse!
It is an honor to have Bastian joining Open Humans. I am eager for him to begin, and I look forward to his work with Open Humans in the coming year – and, if all goes well, years to come. Together we can endeavor to grow an open ecosystem – one that is thriving, sustained, and expands the world with something powerful and new.
Today is my first day as Executive Director of Open Humans Foundation. I am honored and thrilled to be taking the helm! As Open Humans co-founder I’m a familiar face, but I’d like to take this opportunity to re-introduce myself – and to share my vision.
How I got here probably begins with my love for creating and sharing knowledge.
As an early biotech graduate student, I stumbled into Wikipedia. I edited articles, created diagrams, and improved knowledge. Genetics was a theme: a reflection of my graduate work, and a topic I’d loved since high school. I gave the Genetics page a complete remodel – featured article in 2008! I helped One Laptop per Child create an offline Wikipedia for hundreds of thousands of children. I also created a page for my favorite mutation, a thing of history and beauty: Double-flowered.
This love for knowledge sharing – and for genetics – drew me, belatedly, to another project in the lab: George Church’s Personal Genome Project (PGP). (I was already in George’s lab. My thesis was mostly about DNA methylation.) George’s vision for the PGP was radical: open sourcing ourselves. He invited individuals to publicly share their genomes, health records, cell lines, and more. Participants took on strange, unknown risks. It was provocative and transgressive, and George had volunteered as its pilot participant: PGP #1.
In the years that followed, the Harvard PGP publicly released hundreds of genomes and enrolled thousands of participants. I became Director of Research for George’s project, and I was involved in every facet of operations. I created the project’s trait surveys, rewrote its entrance exam, fielded a multitude of inquiries, and helped organize sample collection events. I evaluated hundreds of genomes to create the “research reports” participants received, which explained the potential impact of variants in their genome. I was also first author on key papers for the project.
In addition, I became a liaison for the Harvard PGP and other projects that wished to work with it. When Jason Bobe expanded the GET Conference to add “GET Labs”, I was there as an interface between the researchers, the PGP, and the participants. My ongoing collaborations, through GET Labs and otherwise, have included American Gut (Rob Knight, UCSD), GoViral (Rumi Chunara, NYU), Critical Assessment of Genome Interpretation (Steven Brenner, UC Berkeley & John Moult, U of Maryland), the Personal Genomics Human Computer Interaction group (Orit Shaer, Wellesley & Oded Nov, NYU), and the PeopleSeq Consortium (Robert Green, Partners).
Through these, I started to see the bigger picture of what it means to study ourselves.
Genomes hold larger lessons. We have entered a world of data, where personal and meaningful information is being aggregated about us. But data sharing is foundering on privacy concerns. Silos of control have divorced individuals from their data, and reinforce a divide between the roles of participant and researcher.
This matters, because our data matters – it has the potential to make discoveries, to improve our health, and to empower us. But achieving these visions has begun to seem like an unreachable mirage.
By Michael Gwyther-Jones, CC-BY-SA.
I see a design problem. Our system for research was built in a pre-digital world. Open Humans is a redesign, restructuring how we aggregate data and perform research.
In Open Humans, individuals are the aggregators and data sharers.
And anyone can create a project on the site to work with members.
Projects can be citizen-led as well as traditional academic studies. Projects can provide data analysis tools, or can add new data. Data can come from anywhere – from research studies to third party APIs. A project can also invite members to share data broadly, e.g. in a “commons”, managed by a trusted entity. Researchers can build upon existing data streams. And studies can return their data – where it becomes a resource for personal discovery and future research.
It unlocks new opportunities for longitudinal research, for citizen science, for individual exploration, and for innovations that transcend any single study.
Our role is to be stewards: we have built an empty garden. You are its gardeners.
In this role, I hope you can trust us. Open Humans Foundation is a nonprofit, and my work as steward is supported by my Shuttleworth Foundation Fellowship. This funds me as an individual – and more – it grants me access to $250,000 in project funding each year. But for each $10 in project funding I seek from the Shuttleworth Foundation, I must give $1 of my own income. This is their bargain, and I’m taking it. I’m investing in this dream, and in this community garden.
What has grown already is full of serendipity and innovation. When we started, we seeded this with data we supported: genomic, microbiome, activity tracking, GPS. But now it grows beyond us. James Turner – a PGP participant – created an open source app to add Apple iOS “HealthKit” data. Continuous glucose monitor data has come from the Nightscout Project, a type 1 diabetes community. The Nightscout Foundation is creating a patient-led “data commons”. And Dana Lewis invites data donations from her own amazing community – the Open Artificial Pancreas System (OpenAPS) – and is bringing aggregated OpenAPS data to research teams at Stanford and Johns Hopkins. Newcomers wander in regularly now, bearing the seeds of nascent projects.
And so I invite you. Come, build. Plant your seeds – your data – your projects and ideas. Let’s grow something amazing together.
We’ve added five new data sources for Open Humans members. We know you have some great stuff to share with science. Get your data in so researchers know it’s there!
Easy links below: you can jump right into adding each source…
Connect Fitbit Health and fitness devices, including activity trackers that record steps, heartrate, and sleep, as well as a scale.
Connect Moves
An always-on location logging app for iPhone or Android. It counts steps and classifies activities as walking, cycling, running, and transit.
Add uBiome
Sampling kits for individuals to test gut, mouth, and other locations, performing microbiome sequencing & profiling.
Connect Withings Health & fitness devices, including a scale and a blood pressure monitor, as well as the Health Mate smartphone app.
These sources are all “in development”. We won’t be able to generate files right away, but we will soon! Add the source and we’ll build our data processing based on what we see.
Sharing is always optional. You choose when to share & who to share with. Data is private by default!
Other data sources…
In case you missed them, here’s all our other data sources (some studies, some commercial). Do any look familiar? Follow the link to add it to your account!
You can also add data files from anywhere using our Data Selfie feature!
GET Labs & GET Conference
As a reminder, Open Humans members are invited to GET Labs & GET Conference in Boston this April 25th and 26th! It’s a unique participatory science event that’s been running since 2010. Registration is still open – read more about it on our previous blog post.
We would like to invite Open Humans members to attend the 2016 GET Conference and GET Labs!
On April 25th and 26th, leading thinkers, scientists, and participatory researchers will gather in Boston at Harvard Medical School for two days of interactive science and amazing talks.
Tickets for GET Labs exclusively available to ALL Open Humans members (and ONLY Open Humans members) for a nominal fee of $16! Becoming a member just takes a minute.
Tickets for the GET Conference are typically $299, but attendance is FREE for qualifying Open Humans members!
GET Labs on April 25th
This is an exclusive event for members of the Open Humans community!
What is “GET Labs”? This event is all about advancing science through direct participation. We bring together participants and researchers for a day of interactive labs. If you’ve never been, it’s a unique experience! Our community has helped advance all kinds of research, everything from viral profiling, perfect pitch, ancestry, fitness sensors, user interface design for genome reports, and – probably most popular last year – face mites! (Yep, turns out we all have Demodex mites.)
Fifteen research studies are already planning to attend, and the list is sure to grow. As in years past, the Harvard PGP, GoViral, and American Gut team will attend – and they’re planning to share free microbiome kits with qualifying members!
It’s also a chance to meet other Open Humans members! GET Labs invitations are open to ALL Open Humans members – and ONLY Open Humans members! – for a nominal fee of $16.
The day will close with our first ever GETy Awards ceremony, honoring excellence in participant-centered research, followed by a reception.
GET Conference on April 26th
We’ve got amazing talks & discussions lined-up this year! Come learn from leading experts about:
Integrated Omics Profiles
Microbiomes, Health, and Built Environment
AI & Medicine
Networked Biology
Part of what makes the GET Conference amazing is how the audience truly bridges researchers and participants. Each year, we reserve around half of the seats for participants from our community, as a thank you for engaging with us and collaborating in the creation of culture of participatory research. For qualified members, registration is free: all we ask is for a donation in the amount you can afford. For everyone else, tickets are $299.
To learn more, click the button below and look at the “special opportunity for Open Humans” on the registration page for how to qualify for your FREE Ticket.
Community Seat: Dana Lewis
Board-elected Seat: James Turner
Board-elected Seat: Chris Gorgolewski
So, what do you like about Open Humans?
I am thrilled and honored to announce an expansion to the Open Humans team!
Open Humans Blog 