We held our first community call on December 10th – many thanks to the attendees and invited presenters, Karolina Alexiou and Rogier Koning! Future community calls will be held on the second Tuesday of each month.
Invited guest: Rogier Koning, Nobism, and Cluster Headaches
Rogier shared the Nobism app and data source in Open Humans, which he created to track symptoms, potential triggers, and treatments. Cluster headaches are one of the most painful things people can experience – they’re called “suicide headaches” – and patients understandably want to understand how to anticipate and reduce their own symptoms!
Rogier’s reports showed compelling visualizations produced with the Ubiqum project, which members can share their data with – illustrating how headaches occur over the course of months, at different times of the day – different individuals had different patterns for what time headaches were likely to occur. The effect of medications could be clearly seen in the patterns on the graphs!
One of our long-time community members, Ben Carr, noted he’s also a cluster headache patient, and reflected on his use of the app! He reflected on potential improvements and hadn’t realized he could also join the accompanying Ubiqum project. (Showing us there’s a potential need for prompting people!) Rogier also explained that the app isn’t limited to cluster headaches, and he’d welcome other chronic disease patients using it for new purposes.
Rogier has plans to expand community aspects of his work, and hopes to share more in the future!
Invited guest: Karolina Alexiou and GitHub data import
In addition to the data import itself, Karolina demonstrated how this data can be visualized and what can be learned from it, by running a Personal Data Notebook on her own data. This notebook is already publicly available, so if you are using GitHub and want to give it a try, you can start right away.
Data Types & Uploading files
Mad & Bastian shared some ongoing work on the Open Humans end. While data sets are currently organized by the data source that has uploaded them, this sometimes makes sharing the data complex. Either because multiple projects upload the same or very similar data types (e.g. genetic data from different sources), or because a single data source uploads multiple kinds of data (e.g. activity tracking data that contains both step counts and GPS records). As Ben Carr noticed on the call, this can make granular sharing hard.
To adjust for this, Mad has been working on a data type system, which allows individual data files be classified according to the kind of data in them, instead of just relying on the source. They presented a new uploader tool for Open Humans, that can assign the data type to each file upload. Based on this, Bastian presented how this data can be used to upload environmental noise data, as recorded from an Apple Watch and how it can be explored through a Personal Data Notebook. One thing Bastian learned was that some of his noisiest times were at home; when he looked into it more closely, it was when he was in the shower!
Additionally, the participants of the community call discussed their experiences with tracking blood sugar through Continuous Glucose Monitors, how to make the Personal Data Notebooks more user friendly and whether it is possible to allow access to data without sharing the data sets themselves by allowing analyses being run in the cloud. Exchanging community member experiences and what they are working on was inspiring.
In the last few weeks our community has launched a plethora of new projects that you can join to collect more data about yourself as well as new research opportunities covering topics from the genetics of personality over blood pressure tracking to cluster headaches. Find out more about those projects below:
The cluster headache patient community around Nobism has been particularly active in the last few weeks. Under the lead of Rogier Koning , the community was awarded one of the Open Humans project grants. The grant allowed them to integrate a data synchronization into their mobile application for tracking symptoms and interventions. Check out their app for iOS and Android.
This last weekend I was saddened to hear about the passing of one of our Board of Directors – Steven Keating, an inspiring activist and advocate for access to health data.
Steven Keating passed away on Friday, at the age of 31, ending his battle with brain cancer. When he was first diagnosed, Steven was a graduate student at MIT. His natural curiosity led him to collect and share diverse data about his cancer and treatment.
He shared all sorts of data, video of his brain surgery, and – most memorably – 3D printed copies of his tumor. You can read more about his life in this remembrance on MIT News: “Celebrating a curious mind”. Steven advocated for the importance of access to our health data: to explore, to use, and to share.
As a person, Steven was positive. Amazingly positive. It’s a lesson that helped me on a personal scale: sometimes bad things happen, but I learned that it’s still possible to face them with positivity. Steven taught by example.
When Steven’s “silly tumor” came back a year ago, he told me he wanted to keep serving as normal, as long as he felt able. And he did. He shared his experimental treatments with us during meetings. He had marked “yes” to a board meeting this Monday. He was with us as long as he could be.
He will be missed. My life is a better one for having known him.
snps is a new open source Python package that aims to help users interact with genetic data from a variety of sources, including direct-to-consumer (DTC) DNA testing companies and whole genome sequencing (WGS) services. Specifically, snps provides tools to help with reading, writing, merging, and remapping SNPs.
Two of our project grant awardees – Kevin Arvai and Andrew Riha – have been working tirelessly to build two new web tools that can make use of your genetic data that’s stored in Open Humans in interesting ways. And their hard work has paid off: Kevin’s Imputer and Andrew’s Lineage are now available!
Imputeris designed to fill the gaps in your genetic testing data. Direct-To-Consumer companies like 23andMe usually genotype just a small fraction of your genome, focusing on generating a low-resolution snapshot across your whole genome. Genotype imputation fills in those gaps by looking at reference populations of many individuals who have been fully sequenced in a high resolution, using this data to predict how to fill the gaps in your own data set. Imputer is using the reference data from the 1000 Genomes Project to perform this gap-filling and deposits the filled-up data in your Open Humans account. Kevin also provides two Personal Data Notebooks that you can use to explore your newly imputed data set. If you want to explore the quality of the newly identified variants, you can use this quality control notebook. And if you’re interested to see where your genome falls within a two-dimensional graph of different populations from around the globe, this notebook allows you to explore how closely you relate to other people in the 1000 Genomes data.
Andrew’s Lineage brings some further tools and genetic genealogy methods to Open Humans. If you have been tested by more than one Direct-To-Consumer genetic testing company, Lineage allows you to merge those different datasets into one large file, while also highlighting the variants that came out as different between those tests. You can also lift your files to a newer version of the human reference genome, which might be needed for using your data with other tools. Furthermore, Lineage brings a lot of interesting genetic genealogy tools: It allows you to compute how much shared DNA can be found between your own data and the genetic data of other individuals, using a genetic map. You can then create plots of the shared DNA between those two data sets, determine which genes are shared between them and even find discordant SNPs between the data sets.
I’ve recently joined the board of directors of Open Humans, joining the current board along with two other new directors, Marja Pirttivaara and Alexander (Sasha) Wait Zaranek. I’m honored to be in their company, and I want to take advantage of joining the board to explain how, in my view, Quantified Self and Open Humans fit together. Both communities include many people working in science and technology who take an interest in biometric data. But this isn’t enough to define a common purpose, and in fact a much deeper connection between Open Humans and Quantified Self has developed over the last few years, as each community has approached, from nearly opposite directions, a common problem: How can we make meaningful discoveries with our own personal data?
Open Humans has its roots in the Personal Genome Project,
whose purpose was to supply scientists with human genomic data so that
they could make discoveries more quickly. The geneticist George Church
created a project to sequence the genome of individual volunteers who
agreed to donate their genomic data non-anonymously, creating a common
data resource. Since many important genomic questions cannot be answered
with genome data alone, volunteers also shared other information about
themselves. The Personal Genome Project inevitably became a somewhat
more general personal data resource for science; however, with its focus
on genomic data, much relevant data, including the kind of data that
could be collected in daily life, remained out of scope.
When I first met Jason Bobe, who co-founded Open Humans with Mad Price Ball,
he was keenly interested in this question of how to connect personal
genomes with other personal data sets. Jason had worked with George
Church on the Personal Genome Project. He and Mad saw Open Humans as an
analogous effort, but one that would allow volunteers to contribute any
kind of data. The Personal Genome Project was now a decade old. Perhaps,
with deep personal data sets to work with, scientists could deliver on
the promise of genomics to revolutionize medicine, a promise that had
been long frustrated by the complexity connecting genomic data with real
I understood the goal. A few years earlier, I’d written a long Wired story about the taxonomic collaboration between Daniel Janzen and Paul Hebert.
Janzen, along with his other accomplishments, was among the world’s
most knowledgeable field biologists. Hebert had developed a genomic
assay that promised to identify animals using an extremely small region
(about 650 base pairs) of their mitochondrial DNA. Hebert was confident
in his technique, but needed to prove its utility. How could the genomic
data he was collecting be paired to real world ecological knowledge? At
their field station in the Guanacaste Preserve in Costa Rica, Janzen
and his partner Winnie Hallwachs, along with their students and
colleagues, collected hundreds of butterflies and moths, identified
them, snipped off a leg, and shipped it to Guelph, a city in Canada,
where Hebert ran the sequence. Slowly, painstakingly, they connected the
genomic data to the real world data. More than just proving that
Hebert’s technique worked, they also brought a new degree of resolution
to the ecological picture; showing, for instance, that individual
specimens, though visually almost identical as adults, may belong to distinct evolutionary clades and feed on different plants.
In my first conversations with Jason, I saw this as how Open Humans
should work. It promised to provide the “field biology” for the genomic
studies of the Personal Genome Project.
Unfortunately, as attentive readers, link followers, and experts in
the history of overconfidence in science may already have realized,
there’s a pretty serious flaw in my analogy. Paul Hebert was using the
genome to distinguish strands in evolutionary history, mostly at the
level of species. He wanted to know, given a leg, what kind of creature
it was from. Answering relevant health questions requires understanding
the world at a far more detailed level, down to extremely small
differences among individuals of the same species. The trick that Hebert
used is never going to work; and, for many of the health related
questions we care about, nobody knows the tricks that will work. Fifteen
years after the launch of the Personal Genome Project, it continues to
supply data resources to basic science, but its relevance to medicine
remains mostly a promise.
In the Quantified Self community the focus has always been on
individual discovery: How can we learn about ourselves using our own
data? Many of the questions addressed by people doing their own QS
projects relate to health and disease. Browse the archive of Quantified Self Show&Tell
presentations and you’ll find projects on Parkinson’s disease,
diabetes, cognitive decline, cardiovascular health, depression, hearing
loss, and many other health related issues. The kind of “everyday
science” practiced in the Quantified Self community can be understood as
being the opposite of the genome-wide association studies. Instead of
finding small, telling differences among groups of people, the everyday
science of the Quantified Self finds large effects within a single
person who is both subject and scientist.
This comes with its own kinds of difficulties. People doing
Quantified Self projects related to health face a number of discouraging
barriers, including lack of access to their own data and medical
records, bureaucratic roadblocks and exorbitant costs in ordering their
own lab tests, problems in acquiring the requisite domain knowledge to
test their ideas and interpret their data, and – perhaps most
discouraging to people who are dependent on medical professionals for
some aspect of their care – lack of recognition in the health care
system that self-collected data can be useful for making decisions about
In the 11 years since Quantified Self started, participants have
tried many different ways to overcome these barriers, both individually
for their own projects and systematically through creating tools and
advocating for better policies. One of the lessons from this work is
that while the focus of self-tracking projects is typically on
individual learning, the methods required to make sense of our data
often require collaboration. Existing systems are not designed to
provide support for the kind of highly individualized reasoning we do;
therefore, we have to build a new system. Key requirements of this new
system include: private, secure data storage; capacity to integrate data
from commercial wearable devices; fine-grained permissions allowing
sharing of particular data with particular projects, and withdrawal of
permission; capacity for ethical review both to protect individual
participants and to enable academic collaborations.
Two years ago, we organized our first participant-led research
project in the Quantified Self community. A group of about two dozen of
us measured our blood cholesterol as often as once per hour, exploring
both individual questions about the patterns and causes of variation in
our blood lipids and a common group question about lipid variability. We
had a pressing need for some collective study infrastructure, but there
was no available tool that worked for our needs. We took a DIY approach
and at the end of the project we’d learned a tremendous amount both
about our own varying cholesterol and about the process of self-directed
research. (Our paper, “Approaches to governance of participant-led research,”
has recently been published in BMJ Open; our paper on our collective
discovery about lipid variability has been accepted for publication in
the Journal of Circadian Biology; we’ll add a URL when we have it.)
At the conclusion of our study, one of the participant organizers
Azure Grant, decided to press ahead with another participant-led study
on ovulatory cycling. Azure had already presented a self-study on using continuous body temperature to predict ovulation
at a Quantified Self conference. Now, she wanted to organize a group of
self-trackers to try something similar, but integrating newer
measurement tools to acquire higher resolution data. Among these tools
was the new version of the Oura ring,
which offered body temperature, heart rate, and sleep data. This idea
put new demands on our study infrastructure. Thanks to generous
collaboration from Oura engineers, we could offer participants access to
detailed data from their rings. But how could this data be stored
privately and controlled by each individual, while also being available
using fine-grained permissions to their fellow participants and study
organizers? How could this data be integrated with other data types they
might decide to collect during the project? Where was there
infrastructure for a “field biology” of the self?
We turned to Open Humans. The personal reasons were as important as
the technical ones. Mad Ball, along with her work leading Open Humans,
is a long time participant in the Quantified Self community, who has
consistently advocated for non-exploitive approaches to handling
personal data, and has contributed the results of her own self-directed
research. (See Mad’s recent talk on “A Self-Study Of My Child’s Genetic Risk.”) And Bastian Greshake Tzovaras, the Open Humans research director, quickly proved to be an extremely sensitive and skilled collaborator. Bastian co-founded openSNP,
a grassroots effort that outgrew Personal Genome Project by supporting
citizen science participation. (Currently, there are more genotyping
datasets publicly shared in openSNP than all other projects in the world
With help from Mad and Bastian and the Open Humans infrastructure, we
built our next stage study workflows with encouraging speed and
harmony. Fundamentally, we found ourselves aligned on the core idea that
research processes designed around personal data sets should be built
to protect individual agency, even where this requirement creates
friction for academic collaborators. The rarity of this commitment may
only be obvious to those few people who have gotten painfully deep into
the workflows of study infrastructure. (And I recognize that a post of
this length that is this deep in the weeds can have very few readers!)
But, in a way, that’s one of the beautiful things about this stage of
building a new knowledge infrastructure. We’re far into it enough to
have evidence that we’re on the right track. But we’re still close
enough to the beginning that each step is a significant contribution and
a potential model to build on.
I very much hope that over time – and the sooner the better – our
shared ideas about individual agency and everyday reasoning are embodied
in tools and policies that are so commonplace that no single
organization is responsible for them. But for now, it’s impossible not
to recognize that Open Humans is an indispensable resource, defining an
approach that needs to be developed and expanded, and managed by a team
that has deep insight into the challenges and potential of participatory
science. I look forward to building more connections between our two
I’m thrilled to announce the results of our 2019 elections for the Open Humans Foundation Board of Directors!
Our community seat winner is Marja Pirttivaara, and our board-elected seats are Gary Wolf and Sasha Wait Zaranek.
Marja Pirttivaara: When I first met Marja at the MyData conference in 2018, it was wonderful to find a like-minded soul — between her interests in genetics and in empowering individuals with their personal data. Marja generously agreed to our EU representative for GDPR, and it’s been exciting to see our project become more global.
Gary Wolf: As co-founder and director of Quantified Self Labs, Gary has supported numerous citizen scientists in their quest to use their personal data to understand themselves, and to collectively create new knowledge. His work is strongly aligned with that of Open Humans, and we very much looking forward to his contribution and leadership.
Sasha Wait Zaranek: Sasha is one of the founders of the Harvard Personal Genome Project and continues to lead in this area. Their focus is on genome data: they want to see that data managed by the people it came from, more understandable, and more re-usable for new projects — and they want to help Open Humans make those things happen.
Marja, Gary, and Sasha join our ongoing board members: Mad Price Ball, Karien Bezuidenhout, Steven Keating, Dana Lewis, and James Turner.
We must bid farewell to Misha Angrist and Michelle Meyer — their terms have ended. Both have been involved with the organization for many years, and we hope this is not the last we see of them! We must also bid farewell to Chris Gorgolewski, who has resigned; his 2018 seat is being left vacant for now. Also, we’ve made the voting results from the 2019 Community Seat election available here: http://openhumansfoundation.org/2019-ohf-election-votes.csv
We’re honored by the contribution of every board member, and their collective stewardship of our project. And we’re honored by all candidates for these positions. Not everyone can win — indeed, it would be a poor election if we didn’t have people to choose between. We very much hope other candidates remains involved — there are so many things to do together!
The self-nomination period for our Board of Directors is over and we are excited to share this year’s candidates! We hope to begin the community seat election sometime next week, followed by a board ratification of this vote and election of two additional seats.
I have been involved with and contributing to open source software, and like-minded communities for over 20 years now. I, like others, in OH am a firm believer in open science, open data, and open access. I was an early enrollee in Harvard-PGP, excited by the promise of enabling precision medicine and an open dataset for researchers to use. I hold a Ph.D. in biology from Boston University and have worked professionally in academic, NGO, government, and private industry.
My expertise bridges multiple areas of science having worked in oceanography, satellite remote sensing, AUVs, marine biology, and bioinformatics, as well as being involved with the 9/11 impact assessment of the Hudson River. I have also been running the OH Facebook account for the last two years. In 2018 I was lucky enough to have a hand in facilitating and doing QA/QC on a portion of the NIH Data Commons Pilot Phase Consortium, and have high hopes that at least one fully open source stack emerges from that endeavor.
I am passionate about trustworthy storage systems and digital archives. I am an active member of Open Humans. My interest is mainly focused on: 1) new storage solutions for OH data and 2) better data visualisations of life-logging data collections. I am also co-author of the Open Humans open collaboration article.
My vision about an open health archive was presented during the Data-Driven Self-Regulating Systems (DSS) Workshop in 2018. The main concept is to preserve the health-related data generated throughout the life of an individual without giving away data ownership while promoting open data and data sharing. I keep working on these ideas.
My recent experience comes from postdoc roles (storage systems / distributed systems). I am a former postdoc at the Quality of Life Technologies (DIKU). Prior to academic jobs, I had leadership roles in the industry and government. I have experience in making sense of large databases. I collaborate with the SciEd Network (Lectures without borders).
I am a previous employee of Open Humans (2014-2016). Prior to 2014 I worked at Practice Fusion on the Data Science team, and from 2016 to the present I’ve worked at Canvas Medical building electronic health record software for primary care practices. My recent work at Canvas has focused on security and privacy (I am now the security and privacy officer in addition to my engineering duties).
Since leaving Open Humans as an employee I have been an active user of the project. I’ve also maintained a presence on the OH Slack and GitHub as well as offering my review of projects on the Project Review forum.
I believe I would be most useful in the realms of security and privacy and software development guidance.
Exploring what inner data say, about our health and history, has long driven my work. And teaming with fellow geeks, caregivers, and layfolk has made that a joy. The chance now, to help guide how we Open Humans bring our big ideas to life, as an anchor cohort for the biodata-informed future, would fulfillingly continue that effort. To that aim, I bring strong grounding in genomics, a passion to learn new stuff (hello microbiomes!…), and team spirit.
Background-wise, I trained in evolutionary genomics at Stanford and U. Chicago, led collaborative science at ships both small (Knome) and big (New York Genome Center), and teach genetic counseling students as guest faculty at Sarah Lawrence. To help folks pool personal biodata to drive crowd discovery, I launched the Empowered Genome Community in 2012 and recently founded the free, good cause-allied personal immunogenomics company, Root, to honor tissue donor volunteers with well grounded insights from their own match-screened genes.
I’m a Finnish PhD (physics) and MBA (social and healthcare management), working at the Finnish Innovation Fund Sitra and also an unpaid visiting researcher of the University of Helsinki (DNA related issues). I’m a genetic genealogy expert, admin of Finland DNA project with more than 15 000 members, admin of Finland DNA Facebook group, with 7 700 members. I’m also a founding member of MyData Global. I’m a practical and knowledgeable bridge builder, always curious about the future. I’m just waiting for my whole genome results.
My vision of Open Humans is a trusted global platform and actively cooperating community for fair & responsible sharing and utilizing personal data, mydata, tools and creating best practises.
As a Finn and European and a genetic genealogy & genome data expert (etc) I’d like to contribute to the Open Humans humans community.
By vocation I’m a journalist but since 2008 I’ve been focused on supporting the Quantified Self community as Director of Quantified Self Labs, a California based social enterprise whose mission is to help people learn from their own data. We’ve been allies and active collaborators with OH. Our most recent collaboration involves using OH to support a participant led research project (PLR) focused on self-tracking of ovulatory cycles. I’m aligned with the Open Humans mission to both support individual agency in using our own personal data to answer our own questions; and, in supporting the formation of new collectivities for shared knowledge making. I’m also closely aligned with the OH approach and cultural roots in the open source community. I look forward to helping.
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), NIH common fund, , 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.
In upcoming weeks Open Humans Foundation will be electing three new members to our Board of Directors. Two seats are elected within the board — and one is a community seat 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. Board seat terms are three years.
At this stage we are inviting self-nominations. Being a director of this organization is a position of trust. It is our highest tier of governance – our ultimate decision-making authority. You can learn more about our organization’s governance by visiting the website: http://openhumansfoundation.org/
About Open Humans: Open Humans is a US-based nonprofit website and community that helps individuals aggregate personal data, explore and analyze it, and choose to contribute data to academic research and community/citizen science projects. Visit the website to learn more: https://www.openhumans.org
We got a great selection of new projects and personal data explorations for you as an end-of-year gift. Here is an overview of the data import projects recently launched on Open Humans:
Oura Ring: You can now explore your sleep habits, body temperature and physical activity data as collected by the Oura Ring.
Overland: If you are using an iPhone you can now use Overland to collect your own geo locations along with additional data such as your phone’s battery levels over the day.
Google Location History: As an alternative way to record and import your location data you can now import a full Google Location History data set.
Spotify: Start creating an archive of your listening history through the Spotify integration
RescueTime: Import your computer usage data and productivity records into your account
Read more details about those integrations below:
Connect your Oura Ring
The Oura is a wearable device well hidden inside a ring. It measures heart rate, physical activity and body temperature to generate insights into your sleep and activity habits. With Oura Connect you can setup an ongoing import of those data into your Open Humans account. This allows you to explore those data more thanks to already available Personal Data Notebooks!
Use Google Location History to explore your location data
Thanks to our Outreachy interns we have another new geolocation data source: Google Location History. No matter if you are using an iPhone or an Android phone, you can use the Google or Google Maps app on your phone to record where you have been. Through Google Takeout you can now export this data and then load it into Open Humans and explore it through Personal Data Notebooks.
Explore your music listening behaviour with Spotify data
Another Outreachy intern project was to collect your Spotify Listening History through Open Humans. Using Spotify Connect will automatically import the songs you listen to along with lots of metadata (e.g. how popular was the song at the time you listened to it?). Once you have collected some data, you can explore these through another Personal Data Notebook!