New GoViral website + get a prize for contributing!

ONE OF OUR FIRST PARTNERS HAS UNDERGONE A REBOOT!

GoViral.
Using crowdsourcing to track the spread of viruses.

Join now to help impact the future of public health.
If you haven’t been to their new site, check it out
– it went live in September 2016! –
and sign up

Join GoViral

BONUS:
Get a $5 Amazon gift card
if you are one of the first 1000 participants
to receive your flu test kit & fill in 4 weekly symptom surveys

 


Meet a GoViral Team Member

Ingrid Spielman is the research associate and data scientist who built GoViral’s new website.

Hope: Why did you think GoViral would benefit from having a new website? 14379714_10211042321037579_7715615894899053292_o (1)

Ingrid: GoViral, as it stood, had a website interface without any means to interact with users. The new site makes it easy for us to engage with participants. We can remind them to submit kits, and also show them more of the data they input in the form of cool, interactive visualizations.

Hope: Can you describe your typical workday?

Ingrid: While working on the website, I kept a detailed list of project goals. I took a certain amount of time to learn how to accomplish each goal, then went ahead and implemented it. Basically, it broke down to 40% search, 20% asking smart people for help, 40% trying … That adds up right? … If I had known exactly what we needed to do when I started, I bet this project would have happened much more quickly!

Hope: You received your Master’s in Material Science in 2012. What exactly is ‘material science’ and how does it relate to your current work?

Ingrid: It’s a multidisciplinary field where we look at material failure, and discover and engineer materials that have very specific and/or enhanced properties. By looking at how materials degrade over time due to stress, strain failure, or corrosion from sunlight or chemicals, we learn how to improve them. So you have people in material science who are engineering composites that are made up many types of materials – your shoes, for example. Others look at ways to use PTFE (poly tetra fluoro ethylene) – which most people know of as Gore-Tex – in clothing.

Some material scientists look at biomaterials specifically, and solve polymer problems – in which case they’re half chemist! They apply fundamental physics and chemistry to understand the properties of materials and how they change over time. Practical applications are solar cells – how we improve their efficiency – or building computers with smaller, more delicate circuits. They might discover alloys with interesting electronic properties or design lightweight materials that respond better under stress – think of carbon fiber bikes. Perhaps they build materials with interesting reflective properties – which would be considered metamaterials.

Basically, as my professor used to say and probably still does, everything boils down to a materials science question!

With my research-oriented background, GoViral was a natural fit. But I’m so lucky Rumi said I could work on the website. I had to learn most of everything I did for it from scratch!

Hope: Is there another project you’ve worked on that you found to be particularly interesting and/or fulfilling?

Ingrid: Before I decided to focus on data science, I worked in a microbiology lab where we studied how bacteria move and adhere to surfaces. In particular, we studied the bacteria that causes gonorrhea. I used a software called ‘matlab’ to build a user interface so students could easily upload videos of the bacteria, track them, and then find out how fast they moved and how much they were able to pull on the elastic surface they were sitting on. Data like this has implications for how we sterilize surfaces, and also how we treat bacterial infections – which is obviously very important!

Hope: On your LinkedIn page, you mention that you participate in triathlon racing. How did you get involved in this, and what makes it so enjoyable to you?

Ingrid: Cool that you looked! This summer, I did an olympic distance triathlon race at Lake George. I started triathlons while I was in graduate school. I love all three sports – swimming, biking, and running. On weekends, I go out to Coney Island to do laps and to Piermont for cycling trips. The cycling is by far the most fun of the three – if you like exploring and feeling wind in your face!

Hope: Final question: What health-tracking technology do you wish existed?

Ingrid: There are so many wristwatch tools for tracking health related things. I’d like to measure people’s gate (walking) by putting sensors in the soles of their shoes that could help improve both posture and running / walking techniques.

It would be cool to track insulin levels without actual blood samples. It will be great when the cost of sequencing is low enough that people can have in-home devices, and start measuring their gut microflora and skin microflora on a daily basis. If we also keep track of what we eat, this can probably lead to many discoveries in how foods affect our immune system and health.

Additionally, I’d like us to be able to track cortisol levels so we can see how stressed we are at any given point in time.

Hope: I bet lots of people would track that. Thanks, Ingrid!


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Your data is more powerful
when you’re a part of it!

Celebrating Two Years and 3,000 Members!

Pop the champagne…It’s time to celebrate!

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Open Humans is now a community of 3,000 members…And counting!


FREE STICKERS

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As a token of our gratitude for your participation, we’d like to send you an Open Humans sticker. You can put it on your laptop, phone, luggage — wherever you want (but preferably somewhere that others will see it and know you’re cool).

Get a sticker: Email your address to support@openhumans.org

Please note: This promotion is valid through March 2017 only.

THEN, NOW & NEXT

When we launched in March 2015, we envisioned a platform where participants could ‘open-source’ their body for science. We’ve evolved into a community of researchers, citizen scientists, and individuals whose embrace of open values has indeed enabled new types of scientific study and innovation:

  • James Turner created an open source iOS app that exports “Health” app data (aka HealthKit) to Open Humans

  • Alex Biel and Eric Hekler, PhD  used James Turner’s app as a data source and created a Pokemon Go study pilot to gain a better understanding of how games might influence physical activity

  • Open Humans and developers from the Nightscout Project (type 1 diabetes + open source) created a tool to upload data to the Open Humans platform so it can be easily shared with researchers

  • Dana Lewis is using the Open Humans platform to collect data from DIY artificial pancreas users and facilitate research in partnership with the DIY “closed loop” community

  • …And there’s more! We invite you to check out all of our activities here.

We remain fully committed to sharing data that is centered on our greatest resource: YOU. Open Humans’ future is bright, and our current research pipeline includes diverse projects being developed by academic and citizen scientists who study genomics, toxins, viruses, and more.

Together, we will transform the status quo in humans subjects research!

This is all possible because of you so…

THANK YOU VERY MUCH!

(And we hope you like the sticker.)

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Your data is more powerful
when you’re a part of it!

Have an iPhone or Android? You can join Keeping Pace!

Any smartphone user can now contribute to Keeping Pace!

Whether you’re a marathon runner or only like marathons involving ‘Law & Order’ and the Simpsons…You have valuable data to share.

keeping-pace

Keeping Pace analyzes activity-tracking data in order to understand how seasons and the environment influence movement patterns.

JOIN KEEPING PACE

Personal Sensor Data

Keeping Pace uses personal sensor data for its research. Along with data from the free download-4-39-20-pm Runkeeper app, it is now accepting data from the free Moves app

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  • Moves is an activity diary that passively tracks your movement and calories burned. Unlike other movement trackers, once installed on your smartphone, it runs all the time so you never have to remember to turn it on or off. 

JOIN AND CONNECT MOVES

Why use app-generated data?

  1. Participants have more control over their data.
  2. It’s cost-effective, so it’s sustainable over long periods.
  3. There’s no risk of “recall bias” ie. the mis-reporting that can happen when data is collected verbally.
  4. It makes it easy to focus on short timeframes and the impact of intra-city activities like street fairs, road closings, and snowstorms.

Through Keeping Pace,
your physical activity becomes a resource for the greater good.


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Spotlight on an Activity – Seeq

Open Humans is excited to announce our newest activity: Seeq, a phone app and sequencing study that helps people learn about their ancestry and microbiome. Seeq participants can now add and share their data in Open Humans!

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CLICK HERE TO CONNECT SEEQ 
Download their FREE app, order a $50 saliva kit!

 

Last week, I spoke to Joe Pickrell, PhD, geneticist at the New York Genome Center and co-founder of Seeq, about this venture, the future of genomics and microbiome research, and more.

Hope: What makes Seeq a unique way for people to learn about themselves?  joe_v1

Joe: I think of genome sequencing as this amazingly powerful microscope that we’re just figuring out how to use. We’re one of the only places where people can actually turn this microscope on themselves.

Right now, we give people a look back at their past with their ancestry, and at their current environmental surroundings with their microbiome.

But we also give people their own data, and the data itself contain much more information than that–in principle, there’s information on mutations that have arisen recently in your blood (DNA from saliva is mostly from white blood cells), traits you may pass on to your children, and more.

We’re constantly looking for ways to give participants more back, and we hope people will come up with things we haven’t even thought of ourselves.

Hope: Why did you want to partner with Open Humans?

Joe: I’ve been a part of Open Humans since the beginning! I think I joined at the time when the only connection was to PGP data (my profile: https://www.openhumans.org/member/joepickrell/).

Overall, I think there’s potential to completely change the way genomics research is done, using the Internet and cheap sequencing to empower different communities–disease communities, social networks, and so on–to collectively decide they would like to pool their data to solve major scientific problems.

Building up the infrastructure to make this work is seriously non-trivial, and it’s going to take a lot of experimentation with different models to get it right.

Open Humans is a neat model, and it seems like there’s a great community of people who share this type of vision. So it’s exciting to get a chance to be a part of it, and hopefully we can provide some data and tools that are useful.

Hope: What are you trying to learn from the genetic data Seeq collects?

Joe: We are collecting questionnaire information to go along with the genetic data, and have a whole bunch of analyses going on.

A couple questions I’m particularly interested in now are: are the microbes in your mouth associated with psychological phenotypes like your personality? And: how do genetic and environmental factors interact to influence human lifespan?

On this latter question, we’ve published some work in other large cohorts (http://biorxiv.org/content/early/2016/11/10/085969) but it will be really useful to have sequencing data from Seeq.

Hope: What is Seeq’s relationship with the New York Genome Center? nygenomelogo-color2

Joe: This project is run out of my lab, which is part of the New York Genome Center.

Hope: How do most of your participants find out about Seeq?

Joe: There’s a social aspect to Seeq–if you add someone as a friend, you can compare your ancestry and microbiomes, and see what the ancestry of your (hypothetical) child is likely to be. So the majority of people get to Seeq through social connections to existing users–initially this was just people that the three of us know (Seeq is run by myself, Tomaz Berisa, and Kaja Wasik), but now this has expanded considerably as we’ve gotten into the thousands of users.

Hope: Do you have a favorite story that you can share about someone who has been sequenced by Seeq?

Joe: In our microbiome reports, we also report other things (mostly food) that we see DNA from in your mouth.

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Credit: flickr.bairdphotos.com

We’ve had a few people contact us a bit confused, wondering why “dog” showed up in their list of results. To be clear, we don’t think people are unknowingly eating dog! In most cases, these are people that live with dogs, so it’s probable that dog hair or something is in their mouth sometimes. In a couple of cases though, we’re not totally sure what’s going on.

Hope: What made you want to study genetics?

Joe: I’ve always been intrigued by what makes people see the world differently–sometimes literally, in the sense of how colorblind people see colors in a different way, and sometimes more figuratively, in the sense of how people with different personalities respond differently to stress.

We know that some of this variation is due to genetics, and genetics is currently tractable–that is, we now have the tools to tell people they see colors differently (maybe people don’t realize this until they’re relatively old) or respond to foods differently, and the tools to discover part of the reason people vary in their personalities.

So it’s a really exciting time, and frankly I just stumbled into it because I thought the topic was cool. I’ve been lucky in that it was the right time to do it.

Hope: What genetic, microbiome, or genomic discovery has surprised you the most?

Joe: Probably the most surprises in genomics recently have come from studies of ancient DNA. We now know that, for example, people in Europe today are descended from a mix of populations that existed a few thousand years ago–some related to European hunter-gatherers, some related to Middle Eastern farmers, and some related to population who were living in Siberia (see e.g. http://www.nature.com/nature/journal/v513/n7518/full/nature13673.html).

The standard view in population genetics was basically that Europeans today are descended from the people who were there 10,000 years ago, so it was really surprising to me to see that the populations we call “European” in some genetic sense didn’t exist until recently.

This sort of dynamic seems to have been common across the world in recent history, I’ve written a bit about it here: http://genetics.med.harvard.edu/reichlab/Reich_Lab/Welcome_files/PIIS0168952514001206.pdf

Hope: What questions do you expect genomics and microbiome research to be able to answer in the next decade?

Joe: On the genomics side, it’s going to be possible to tell you what makes you and your family unique–we’re going to find the rare genetic variants that cause your family members to have early-onset heart disease, or why you and your dad happily sleep only four hours a night, or (on a more trivial note) why you and your mom burp when you yawn (no joke! https://www.reddit.com/r/NoStupidQuestions/comments/2lgjht/i_always_burpmake_a_burp_like_sound_when_i_yawn/). This is because the technology needed for this (genome sequencing) is only now cheap enough to get to the sample sizes necessary for these types of study. 

On the microbiome side, in ten years I’d hope we’ll figure out what the hell it means. There’s a lot of hype about microbiome research, but there’s a fundamental problem in that the microbiome is like any other epidemiological variable–it changes in response to your environment in a way the genome doesn’t. So when you see a study that says “Presence of microbe X is associated with obesity”, it’s hard to know if the microbe causes obesity, obese people are a better host for the microbe, or whether it’s just that obese people tend to have a diet that’s favorable to the microbe. These sorts of issues are really hard to tease apart, but I do think it’s a tractable problem.

Hope: How do you foresee engaged, data-sharing participants will impact research? open-humans-network-hand-300x300

Joe: I think this has the potential to completely change the way research in some fields is conducted. Specifically, the power to decide which research questions are “important” lies with the people who collect and fund data collection, and this is a fairly small number of people.

Once everyone has access to their own data, there’s the potential for a huge influx of new ideas and approaches and really exciting things can happen. But this is not a foregone conclusion, people have been saying this for years and it hasn’t really happened yet. There’s a lot of work that needs to be done on building infrastructure, making participation fun, and more. We hope to play a role in this, and it’s why I’ve been a member of Open Humans as well.

Hope: Do you do any regular health tracking?

Joe: I don’t.

Hope: Have you changed any of your lifestyle or dietary habits due to the information you’ve received from sequencing or health tracking?

people-scifaculty-pickrell1Joe: Not on a day-to-day basis, but finding out I’m an APOE4 heterozygote (discussed here: http://genomesunzipped.org/2011/07/visualizing-the-impact-of-apoe4-on-ageing.php) has motivated me to be more interested in the genetics of Alzheimer’s disease. That result and blog post ended up motivating the research I mentioned earlier (http://biorxiv.org/content/early/2016/11/10/085969).

Hope: What health-tracking technology do you wish existed?

Joe: One thing that would be really useful is a real-time measurement of your immune system–maybe a wearable that monitored expression levels of some important immune genes. Then if you saw some particular marker spiking, you might be able to say “Uh oh, that guy who sneezed on me in the subway had a bacterial infection, time to start a course of antibiotics”, or “Something I just ate seems to be triggering an autoimmune reaction, maybe I should talk to my doctor”, or things like that. Obviously it’s currently impossible to make these measurement non-invasively, but in the long term who knows.

To read Joe’s interview with Madeleine Ball, cofounder of Open Humans, CLICK HERE to go to Seeq’s blog.

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Love fermented foods? Hate them? Check out American Gut’s free new study!

amgut-logo-sticker   Fermented Foods Study

  • Why join?
    • It’s free and you do not have to be a current or former American Gut participant to join
    • You’ll get your gut microbiome profiled
  • What are fermented foods?
    • Yogurt, kefir, kimchi, kombucha, miso, sauerkraut, tempeh, pickles, and more
  • Requirements
    • Have a diet consisting of – or lacking – fermented foods (they need people in both groups!)
    • Must be <50 years of age
    • Must have a Body Mass Index >19 and < 30
    • Must not have taken antibiotics in the last year
    • Must have no history of IBD, IBS, or Diabetes
  • What you’ll do if you join
    • Once a week for a month, swab a used piece of toilet paper after going #2
    • Answer a survey with health and lifestyle questions

Interested?
Email Project Manager Embriette Hyde at ehyde@ucsd.edu

Holiday Exclusives & Gift Ideas

Searching for unique and memorable gifts?

We’ve collected options that teach people cool things about themselves…And produce data they can share!

SPECIAL OPPORTUNITIES FOR OPEN HUMANS MEMBERS

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Five Site Explorer Kit – $89 (~78% off regular price of $399)

  • Discover all the bacteria living in your mouth, nose, skin, genital AND gut microbiomes
  • Special offer for Open Humans – ‘5 sites for the price of 1’
  • Use discount code shared in our newsletter
  • Offer valid until Friday December 16 or while supplies last

detoxme
Detox Me Action Kit – $299

  • New crowdfunded study from the nonprofit Silent Spring Institute
  • Test your personal exposure to ten common household and environmental chemicals (e.g. bisphenol-A, aka “BPA”)
  • Get a personalized report comparing your results with others, including tips on how to reduce your exposures
  • Special bonus for Open Humans – they plan to return data to member accounts!

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Veritas myGenome Service – $899 (10% off regular price of $999)

  • Whole genome sequencing and health interpretation
  • Special bonus for Open Humans – they are opening their holiday special a week early for members! Use discount code shared in our newsletter
  • Offer valid until Saturday January 7 or while supplies last
  • NOTE: There is an additional $99 fee to receive your Variant Call Format (VCF) file. (You’ll need to contact support@veritasgenetics.com.) VCF raw data is needed for third-party interpretation and/or sharing on Open Humans.
OTHER HOLIDAY DEALS
AncestryDNA Test Kit – $89 (10% off regular price of $99)
  • DNA testing for family history
  • No special code required
  • Offer valid through December 14
Genos Whole Exome Sequencing – $374 (~6% off regular price of $399)
  • CLIA-compliant, 75x on-target coverage via a saliva spit sample
  • Analyzed with GATK best practices workflow
  • Download as a VCF file for sharing
  • Certified genetic counselors at preferred rate
  • 25% off select health-tracking products
  • 25% off your entire order through December 25 when you buy 2 or more devices
MORE GIFT IDEAS
23andMe Ancestry Service for $99 or Health+Ancestry Service for $199
American Gut Microbial Sampling Kit – $99
Fitbit health-tracking products, accessories, services and apparel (prices vary)

May you have a happy, healthy, and inspiring holiday season and New Year!
– The Open Humans team
Open Humans Foundation is a 501(c)(3) nonprofit organization. Contributions are welcome and tax-deductible to the extent permitted by law. You can also support us by shopping at AmazonSmile.
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Spotlight on a Researcher: Alexander Biel

Alex Biel is pursuing graduate education in Obesity Prevention and Management at Arizona State University. As part of his master’s thesis in Eric Hekler’s Designing Health Lab, he created ‘Pokemon Go: A Socio-Technical Exploratory Study’. The aim of this pilot study was to gain a better understanding of how games might influence physical activity.

You can join Alex’s study on Open Humans! The Designing Health Lab might have funding for another round. If it does, Alex will get in touch with you.

I spoke with Alex last week.alex_biel_improved

Hope: What do you think are the most glaring mistakes that society makes regarding obesity prevention and management?

Alex: Our entire environment is pretty great at making us fail to be active. I also think the media does a crappy job of showing what’s realistic. That can be discouraging — it was for me. But we have enough information now on the consequences our built environment have, so we should rethink how we’re doing things. It’s time for us as a society to pivot and come up with healthier strategies. The obesity epidemic didn’t happen because of personal failures.

Hope: Why did you want to study people playing Pokemon Go?

Alex: I wanted to look at whether Pokemon Go impacts physical activity. Since Pokemon Go inadvertently prompted people to walk more, it provided a unique opportunity for research to understand how this game, and other games more generally, can be used for fostering physical activity. Also, it’s considered one of the top games ever in terms of initial downloads.

Hope: What was most challenging about the Pokemon study? What was most interesting?

Alex: I heard from others in the lab that recruitment is difficult.  I didn’t really understand this until I worked on finding people myself. My recruitment strategy wasn’t as fluid as I would have liked. I just walked up to 500-600 random students on the ASU campus and asked them if they play Pokemon Go.

I got ethics board approval on October 1st and the first run of the study was done in less than a month. That’s an incredibly quick turnaround that was made possible partially because of all of the great infrastructure that Open Humans provides.  It allowed me to learn some interesting points, such as what seems to be driving gameplay, relatively quickly.

Hope: Is this the first research study that you designed? If not, what else have you worked on?

Alex: This was my first study. Thankfully, Open Humans made it a lot easier than I expected to get started. It gave me the information about steps, which was my main outcome variable,become easily available via their connection with Health Kit.

Hope: Can you describe what gamification is and how it relates to your research?

Alex: Gamification is using game thinking and game mechanics to solve problems and engage users. In this study, my goal was to explore if PokeMon Go appears to influence steps taken per day (spoiler alert, so far it looks like a small trend, but nothing significant based on our current sample) and then to look at the game mechanics of PokeMon Go.

Going forward, I’d like to explore how to create a more efficient recruitment process. I’d also like to add more validated measures to the protocol. A couple of the questions I’d wanted to ask were excluded because they were too open-ended and there were no definitive way to analyze them.

Hope: You’re currently writing your thesis. How do you see yourself using your degree in the future?

Alex: If all goes according to plan, I will be continuing my education at ASU in Dr. Hekler’s lab. I am hoping to use my degree to specialize in designing programs catered to healthy living and healthy food choices. Dr. Hekler has a couple awesome studies that are currently being reviewed, so I am hoping to dive into one of those just as soon as they get approved. *fingers crossed*

Hope: Besides being a graduate student, you’re also a certified personal trainer. What piece of advice have you repeated most often when working with clients?

Alex: One of my old professors said, “Eat less, move more.” I really think that’s the best advice. I’m a huge advocate for developing a healthy lifestyle. I lost 60 pounds by trial and error. When you put immediate gratification aside, anything is possible. It’s hard to change, but doable — especially if you have the right motivation. Find something that gets you psyched and channel that to find better ways to cope. I think a lot of people who claim to be healthy don’t have very healthy coping behaviors.

Hope: Do you do any personal health-tracking on a regular basis? If so, what have you found most helpful about the data you’ve collected?

Alex: Not really. I’ve used them in the past. Theoretically, health trackers are awesome. But I think they’re a way better tool to get people started on a healthier lifestyle than they are to get people to sustain that lifestyle. They’re more like a wake up call. The first time you use one, you think, “That’s all I’m moving?!” People are bad at guessing how much they move. Using a tracker makes you more realistic about your own behaviors, but it’s not necessarily going to get you to change your habits. For instance, I know I don’t walk a lot – I don’t need a tracker to tell me that. So I try to make up for that by standing and stretching as much as possible. I believe that if you’re not getting one thing, then try to balance it out by doing something else.

Hope: What health-tracking technology do you wish existed?

Alex: There’s only so much you can do with the information given to you by the current trackers. Say I’ve walked 7,000 steps today. I don’t know how that’s impacting me. It would be cool to have a one-stop shop that tracks food quantities, health behaviors, and physical activities. I’m optimistic that this will happen one day, but right now you have to be really dedicated to make use of trackers. Plus, most devices and techniques are not that accurate. Even the calories on the back of a box of food are only as accurate as the FDA requires.

Hope: According to your LinkedIn profile, your interests are fitness, coffee, reading, learning, and writing. Is coffee the fuel that sustains your other interests?

Alex: Pretty much.. A nice cup of coffee is my reward for doing the things that I should be doing.

Want to join Alex’s study?
You can join on Open Humans!
The Designing Health Lab might have funding for another round. If it does, Alex will get in touch with you.

Want to get in touch with Alex?
Reach out to him through his Member Profile or LinkedIn

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An inspiring video, new site features, and a new name!

Check out this inspiring video featuring Open Humans participant Liz Salmi and participant/board member Steven Keating.


Search & filter members.

Looking for someone’s profile? Want to see who else has joined an activity? We’ve upgraded the Member List! You can now search for other participants by name or username. You can also use a drop-down to filter the list according to activity, study, or data source.

Visit our new Member Page


Everything about an activity – all in one page.

Want to join a study? Add a data source? Manage related data? Find new ways to share? We’ve pulled all these features together with pages for each activity.

Here are some activity pages you might want to check out…

  • Open Humans HealthKit Integration
    Got an iPhone? This project and open source app, created by James Turner, enables you to add your iPhone’s Health data to Open Humans.
  • 23andMe
    Are you a 23andMe customer? You can add this data to Open Humans. Already added your data? Visit this page to see your files, and find projects you can share it with!
  • Circles
    Got nipples? (Probably!) Join this study to help Abby Wark at Harvard Medical School learn more about the areola – an understudied & uniquely human anatomy feature.

Activity pages are also easy URLs to send to friends. Feel free to share!


A new name for our nonprofit.

Our nonprofit has a new name: the Open Humans Foundation.

Open Humans is a project of a 501(c)(3) charitable organization. Since its founding in 2008, this organization’s name has been “PersonalGenomes.org”. We’ve now got a new name, but our mission remains the same: to make a wide spectrum of data about humans accessible to increase biological literacy and improve human health.

Check out the new website at: http://openhumansfoundation.org

The Open Humans Foundation continues to support our other programs, including the GET Conference and the Personal Genome Project.


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Spotlight on a Participant – Liz Salmi

Liz Salmi is a “healthcare communications nerd, patient advocate, brain cancer blogger, neuro-geek and all around OK gal.” She has had two brain surgeries, 24 months of chemotherapy, and says it is her duty and honor to tell her story. We spoke a few weeks ago.

Hope: How did you find out about Open Humans and what made you join? 

Liz: I first heard of Open Humans from Steven Keating. I’d been following his story for a couple years since we’re both living with a brain tumor. We met when we were asked to participate in “The Open Patient,” a documentary about applying the “open source” philosophy in health care. He was asked to be featured in the documentary because he has open sourced a lot of his health data, and I was asked to do so because I’ve been open sourcing my healthcare story through my blog. I joined Open Humans because I wanted to share some of my health data, too.

Hope: What is most fulfilling to you about sharing your data? 

Liz: There’s sharing data and then there’s sharing information about an experience. What I find fulfilling about sharing my story is that I’m able to connect with others who are going through a similar experience. So many of the people who read my blog write to me, and I get to learn their stories as well. Fewer than 2% of cancers are brain cancers, which means there aren’t many people living with it. Also, the prognosis for most brain cancers is not very good. But someone diagnosed today could stumble across my blog and learn what it’s like to live with this! That’s why I’ve decided to continue it and write about the survivor stage. I still get brain scans every 6 months, and I take medicine for the side effects of my tumor, such as epileptic seizures. I talk about all of this on my blog. Even if the tumor grows, I will continue to share my story.

I’m getting more into the idea of sharing my health data. I believe this data could be a valuable resource not just now, but also in the future. I sometimes wonder if I’d be this open if I felt stigmatized because of my disease, but I have never felt discriminated against because of it. I know people who have rare diseases who haven’t been as fortunate in this regard. It’s a very personal choice to share health information. What is right for me isn’t necessarily right for everyone.

Hope: Before you started your blog, had you ever shared health data — for example, by participating in traditional research studies? 

Liz: I’d never shared health data before my diagnosis because I’d never been in a position to. I wasn’t on a university campus where students were being recruited for studies, so I never felt I had access to any sort of research. However, one of the places I went for a second opinion on my diagnosis was the University of California, San Francisco, a teaching hospital. They asked me to join a study, and said I’d get $20 for it. I said, “Sign me up!” A year later, they contacted me to see how I was doing, and by that time I was already blogging about my experience. I’m one of those people who likes filling out forms and surveys, so at some point I realized I didn’t need any sort of financial incentive to share my data. I felt I had valuable information, and it was fulfilling to know that researchers were looking at it and some good could come out of it.

Hope: You said that it was a huge decision to change the setting on your blog from private to public. Was the decision to publicly share some of your health data on Open Humans similarly momentous, or a no-brainer?

Liz: It was a no-brainer! Even though I had my blog and various other opportunities to be “out” as someone living with brain cancer, I didn’t have a platform to share my health data. When I learned about Open Humans, I knew it was the just the kind of platform I was looking for.

I’ve learned that there are a lot of people who want to contribute data, but who don’t fit into existing studies. It would be great if Open Humans could become a repository for their data, so researchers could access it now or in the future.

Hope: Tom Delbanco, MD and co-founder of OpenNotes, said in the excellent Open Patient video, “If you’re healthy, you worry about privacy. If you’re sick, or if you’re in the emergency room, you could give a damn about privacy. You just want everyone to have access to everything right away so you can be helped.” Do you think the needle is moving at all on this? Do you get a sense that people you meet – either online or off – generally share a commitment to data sharing?

Liz: I was diagnosed with my brain tumor in 2008, and my instinct was to blog about it because I couldn’t find a lot of the sort of information I wanted online. But my boyfriend (now husband), friends, and health care advocates cautioned me against this. They were concerned that I’d regret it because my feelings about my privacy could change over time. But pretty soon they thought it was really cool how I was reaching people!

I’m a member of a generation that has grown up sharing stuff on the Internet, so – for better or worse – we’re used to sharing what older generations consider too personal to talk about publicly. Sharing is ingrained in us. We’re not judging each other. I know people from certain cultural or religious backgrounds still believe that talking about disease is somehow inviting ill will, but most of us just don’t think it’s a big deal.

Hope: You mentioned in your TEDx talk that friends of yours crowdfunded for your medical bills and that your blog is an effort to redefine the support group. Obviously, you’re also sharing your data online on our site. Do you feel you’ve experienced any drawbacks from this 21-century model for healthcare, or has it all been positive?

Liz: Everything has been really positive. Web communication used to be the wild, wild west, but it’s not anymore. It can be very rewarding.

Hope: What are the biggest misconceptions about people living with rare or serious diseases?

Liz: It depends on the disease. I know people with diseases you’ve never heard of. They often feel left out and as if they have no support. I’ve mostly met them over Twitter — through #RareDisease and #BTSM, which stands for Brain Tumor Social Media. I can relate to what they’re going through because there are about 120 types of brain tumors, but we’re still the black sheep of the cancer world. As with rare diseases, there’s not a lot of money flowing in for treatment.

I’ve become a vocal patient advocate partly because I know what it’s like to not be able to find an appropriate support group. Different diseases require different types of support. For instance, people with brain tumors have neurological issues. People with other cancers can’t relate to this, so a generic cancer support group isn’t right for us. Larger cities have more options, but not everyone lives in large cities.

As a side note, there are a lot of things laypeople can do to impact healthcare — like lobbying for more funding. I’ve done this at the federal level, but calling your local district office can make a difference, too.

Hope: Last question. What health-tracking technology do you wish existed?

Liz: I wish there were more ways to share health data and more partnerships between researchers. Also, that more data sites had an app version and that some health tracking apps already in existence were more user friendly!

Want to get in touch with Liz? Reach out to her through her blog, Facebook, Twitter, or LinkedIn.

Study Update: Keeping Pace

One of our goals at Open Humans is to provide updates on participating studies.

Keeping Pace examines how exercise patterns correlate to the environment. Dr. Rumi Chunara spoke in depth about the study at this year’s Health Data Exploration Network Meeting:

  • Watch her talk on YouTube to learn:

    • Why the ‘built environment’ matters

    • Implications of using personally-generated data for research

    • Specific exercise trends observed so far

Dr. Chunara and her team have proven the efficacy of their data by garnering results consistent with findings from social media research:

  • People are most active on the weekends.

  • People are least active on Fridays.

  • The most popular weekday for exercise is Tuesday. (Feel free to speculate on why this is!)

They use data from the free Runkeeper app* to find out:

  1. Where are people most active?

  2. How does this compare to others who live nearby?

  3. What activities do people choose for recreation?

  4. What activities do people choose for transportation?

*They’re looking into expanding to other sources. Stay tuned!

According to the CDC, 71% of adults in the United States are overweight and 35% are obese. Although diet is a significant factor, there are environmental influences as well. Keeping Pace aspires to help inform urban planning and transportation policy changes that could improve public health.

So keep exercising…
And let your workout data be a resource for the greater good! 

Join KEEPING PACE today