All posts by Mad Price Ball

About Mad Price Ball

Executive Director of Open Humans Foundation and Shuttleworth Foundation Fellow.

“Self research” panel video, join next on Mar 10!

We wanted to share our recording of an excellent a panel we had on Monday, and invite you to our next one on March 10.

As part of our Keating Memorial Self Research activity, we discussed how to get started with your own self-research, what challenges one might experience, and advice to solve any issues encountered so far. In addition to having some veteran self-researchers, we were happy to have some first-timers join us as well!

Liz Salmi, Katarzyna Wac, Rogier Koning, Steven Kaye, Gary Wolf and Steven Jonas joined Bastian Greshake Tzovaras and Mad Ball to share their experiences on a variety of topics, including how to collect relevant data, how to keep motivated when doing time-intensive active tracking, and how just the act of collecting data can already modify our behavior.

You can watch the full recording at https://www.youtube.com/watch?v=v2JmFSQ4ZjE

We’re going to have the same format for our community call on March 10. Our topic is “From individual to collective self-research”: How do people translate individual ideas and efforts to work that involves others? This can include shared & re-used methods, tools, and analyses, to aggregating data for collective insight. We’ll invite attendees to participate as a panel of ourselves, and we’ll be recording the conversation to share everyone’s questions and insights with others.

You’re invited to take part! Meeting info: https://tinyurl.com/vu8nzze

If you’re inspired to do your own self-research, you can still join the Keating Memorial and join our group of self-researchers: https://www.openhumans.org/activity/keating-memorial-self-research/

Notes & video from our self-research kickoff

Kickoff Webinar Attendees ScreenshotIn case you missed it: we took notes & recorded our kickoff webinar for the Keating Memorial Self Research activity last week!

On Thursday we’ll have “open office hours” to offer free expert support for people getting started with questions and ideas about what they want to do. The meeting is at 10am PST / 6pm GMT on February 13 (Thursday).

Please feel welcome to join the videochat on Thursday! See this link for how to join (it’s also where we’ll take notes): https://tinyurl.com/uqw5gcl

You’re welcome to join the Keating Memorial Self Research activity at any time in coming months. (Although we think it’s ideal to start now!) Our support is staged (developing ideas, prototyping tools, data analysis) but we’ll be available throughout. Our goal is to complete projects and share what we learned no later than mid-July.

Notes from the meeting are available online, and the video is available below.

Keating Memorial Self Research

We want to share a new project we’re running in coming months: Keating Memorial Self Research – an invitation to collaborate in self-research!

(Click here for extended details, including timeline. If you’re unfamiliar with Open Humans, click here to read more about us!)

We’re inviting people to share their ideas about self-research projects – questions they have, and potential approaches – and provide support for each other in our efforts.

Doing this in a group means you can get help when you’re stuck! This is an opportunity to try self-research for the first time – or to pursue a project you already have – by doing it with a small group of people who have diverse skills, lots of experience, and a desire to support you.

To join:

  • Log in to our Self-Research Forum
  • Post something:
    … a self-research project you might want to do, a project you’re currently working on, something you already did, or just introduce yourself – say hi!

Anybody can do self-research! It can range from structured journaling to rigorous N-of-1 studies. It’s about you – and it can be about nearly anything. From introspection to data analysis, self-research can help people find what habits work for them, manage chronic conditions, and learn more about themselves.

Our goal is to start in February and to have completed our projects by July. What we learn will serve as a celebration in memory of Steven Keating, an inspiring advocate for patient data access. You can read extended details about this effort on our site (including more about Steven, our timeline, and calendar of events).

Collaborating on individual discovery

About the authors: Mad Price Ball and Bastian Greshake Tzovaras lead Open Humans as Executive Director and Director of Research, a nonprofit project dedicated to empowering individuals and communities around their personal data, to explore and share for the purposes of education, health, and research. We have other diverse work in open science, data technology, digital and research ethics, health and humans subjects research, and citizen science. We’ve been thinking about this for a while now: What can be built to make collaboration a reality in self-research?

Gary Wolf’s call for enabling individual discovery describes a vision we also share: we believe in the untapped potential of people studying themselves. Answering questions relevant to their own lives, with motivations ranging from chronic disease to curiosity. We encourage you to read what he’s written: “How to Make 10 Million Discoveries”

We can all ask questions about our lives: sometimes unique, sometimes common. “Does this medication help me? Do I say “sorry” too often? Is social media making me unhappy?”

Each of those questions is a potential discovery – about you.

Gary wrote: “My colleagues and I envision a world with as many new, consequential health discoveries as there are articles in Wikipedia.” That is, ten million discoveries.

We think this can be done, and we’ll tell you how.

(And if you’re interested in helping – skip to the bottom to read how!)

Doing things together

“If you want to go fast, go alone. If you want to go far, go together.”

Until recently, people would have told you it’s impossible for hundreds of thousands of volunteers write the world’s largest encyclopedia in nearly 300 languages. Wikipedia now exists. It is an inspiring example of the potential of “peer production”: the idea that people can co-create knowledge in a collective way, with an open collaborative approach. It is made possible by the Internet – by online methods for knowledge-sharing, re-use, and decentralized coordination.

Could this work with self-research? Gary observed the potential:

“Technology that makes it easy for people to make, discover, and share things has fundamentally reshaped older systems of mass production in many domains. Why not in health? The diversity of needs and questions people have, and the diversity of skills and experiences required to address them, makes this a natural job for peer production. Healthcare may be slow in helping. But we can help each other.”

Few of us can become an expert in everything we need when studying ourselves. This is something peer production can solve. The outcome is incredibly powerful: people can contribute in the place they are expert, and benefit from the expertise of others.

Imagine a world where someone produces an analysis of their data – and then shares it in a way others can easily use to analyze their own data.

Imagine a world where someone produces a tool to collect data – and then shares it in a way others can easily use to collect their own data.

Even more – imagine the power if these are done in “open” ways – where analysis code can be remixed to answer a new personal question, where an app or hardware tool can be repurposed to collect the data you need.

Imagine a place where people shared their remixes. Their methods for putting the pieces together. Their ideas.

This isn’t pure fantasy: we’re already part way there! The card10 badge that Gary discusses – a device self-trackers might use – is an open hardware project that has produced scores of open source apps. In Open Humans, we have scores of open source notebooks you can use to analyze diverse personal data. In the Quantified Self forums, there is a growing set of “project logs” where people share self-research as they do it.

What’s missing is a synergistic connection for the parts: a thriving community of co-creators.

What’s left to build

The answer is, to us, deceptively simple: we need better communication.

We need to connect people more: to share personal projects and tools and ideas, to engage and help each other, to form groups that share our interests. There are already many solutions for how to go about self-research. What we really need is a place where we can learn about, use, and adapt the things that already exist and have already been done. We need something that promotes peer support and collaboration through communication, sharing, contribution, remix, and re-use.

We should make those things easy and rewarding. Doing research about ourselves needn’t be a self-centered task: when we share our solutions and experiences and discoveries, that can have value to others. We can become part of something larger than ourselves.

To be clear: there is more needed than “building a platform”. It needs communities using it. Self-research needs to be do-able. Gary’s vision of ten million discoveries requires aligned work in the tools, the methods, and in communities that want it – things other stakeholders in the Article 27 effort represent.

We’re not alone in seeing the missed opportunity. A recent paper about the Quantified Self community (Heyen 2019) reflected:

“it is noticeable that, so far, no knowledge accumulation can be observed in the QS movement, nor has a common stock of knowledge developed (yet). This is certainly also due to its rather loose form of networking. […] …each self-tracker starts more or less from scratch, regardless of whether another self-tracker has already worked on exactly the same question and gained insights that could be built upon. Correspondingly, public presentations of self-tracking research at meetups or conferences make hardly any references to other self-trackers and their activities. In this respect as well, personal science is a very self-related affair.” (emphasis added)

What’s missing isn’t merely new solutions – but, more importantly, connecting people who create and use them. A place where new solutions are created and shared and improved upon.

This is entirely doable. One of the most powerful aspects of the Internet is that it connects us.

What you can do

We want to build this, and we need to prototype. You can help.

Can you do a self-research project together with us?

We’re calling for people to work together in the coming months to do a set of self-research projects together. If you’re interested in being part of the group, get involved!

You can…

We are hoping this effort will be, in part, a memorial. Last year we lost Steven Keating, a member of our board, to brain cancer. Curiosity was a driving force in Steven’s life, and he was an inspiring advocate for patient data access. He recorded and shared videos of his brain surgery, explored his cancer’s genetic data, and printed 3D models of his tumor.

In his memory, we would like to help more people make discoveries about themselves. What we do in coming months has the potential to seed an ongoing community.

Notes from our first Community Call

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.

Interested in attending on January 14? You can add the Google calendar event and visit our ongoing agenda & notes document to get information about joining the call.

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

Karolina presented one of our latest data source additions, which might especially be of interest for programmers. Her GitHub data import gets all data on contributions made to (open source) code projects on GitHub, giving members a view of to which projects they contribute and when & how much they program.

github commit word cloud
An analysis example from the GitHub data notebook: a word cloud generated from  commit messages

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.

Noise mapping plots
Bastian’s noise mapping, split by movement type (cycling, stationary, walking).

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!

Further discussions

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.

If you want to participate in the next community call please see our Community Call information & notes document for event details, it will be 14th of January at 10am PST / 6pm GMT.

Remembering Steven Keating

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.

Our new 2019 Directors

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!

2019 Board of Directors Candidates

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.

Benjamin Carr

Links
https://twitter.com/BenjaminHCCarr
https://github.com/BenjaminHCCarr/
https://www.linkedin.com/in/bencarr/

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.

Vero Estrada-Galiñanes

Links
LinkedIn: https://www.linkedin.com/in/veronicaestrada/
MyPage: https://sites.google.com/view/veroeg
Twitter: https://twitter.com/GalinanesVero
DSS workshop paper: https://arxiv.org/abs/1809.01974

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).

Beau Gunderson

Links
Homepage: https://beaugunderson.com
GitHub: https://github.com/beaugunderson

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.

Nathaniel Pearson

Links
Twitter: https://www.twitter.com/GenomeNathan
Blog: http://genomena.com/
Slides about various projects: https://www.slideshare.net/NathanielPearson
Talks:
https://www.youtube.com/watch?v=ZX0culYjU_A (whole-genome talk) https://www.youtube.com/watch?v=NxkL-KtUaJY (HLA talk)

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.

Marja Pirttivaara

Links
Linked In: https://fi.linkedin.com/in/pirttivaaramarja
Twitter: https://twitter.com/marja_p?lang=en
Blog: http://www.dnaguru.fi/
Facebook group: https://www.facebook.com/groups/FinlandDNA/

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.

Gary Wolf

Links
http://quantifiedself.com

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.

Alexander (Sasha) Wait Zaranek

Links
Twitter: https://twitter.com/wait_sasha
Google Scholar: https://scholar.google.com/citations?user=Ifj9cY0AAAAJ&hl=en
Orcid: https://orcid.org/0000-0002-0415-9655

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.

Inviting candidates for our board

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/

Our deadline for self-nominations is March 15. Please self-nominate by completing our self-nomination form: https://goo.gl/forms/P3eCAmExACoJ0P3Z2

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

You’re also welcome to chat with us and other Open Humans members in our community Slack chatroom! See: http://slackin.openhumans.org

Help us resurrect OpenPaths!

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!

We need an iOS developer, and an Android developer. We’re also seeking a full time Django developer for our main site, who might also help build a new OpenPaths server.

Please help and spread word! Come chat with us in our community Slack, and share our jobs page to help us find developers that can help.