A message from George Church, President of Open Humans Foundation Board of Directors, and Misha Angrist, John Cammack, Esther Dyson, Juan Enriquez, Steven Keating, and Michelle Meyer.
On behalf of the Open Humans Foundation Board of Directors we are thrilled to announce a new Executive Director for the Open Humans Foundation: Madeleine Ball.
Madeleine Ball is co-founder of Open Humans, and our previous Director of Research. In recognition of her vision for opening human health data – and her talents in pursuing this vision – Madeleine was recently awarded a Shuttleworth Foundation Fellowship. We are thrilled with her recognition with this award, as it publicly confirmed what we privately knew: Madeleine is an enormously talented individual that balances thoughtful strategy with bold vision. We are confident that she will lead OHF to new innovations and achievements.
Our organization has undergone exciting changes in recent years, and we have had a rich history since our start. Founded by Jason Bobe and George Church in 2008, our organization was originally called “PersonalGenomes.org” to reflect its focus on George Church’s Personal Genome Project.
Jason, our organization’s co-founder and outgoing Executive Director, was pivotal in reifying George’s pioneering vision for open science, genomes, and health data. After helping to establish the Harvard Personal Genome Project (PGP), Jason set-up a global network including sites at Sick Kids Hospital in Toronto, Canada; University College London in the United Kingdom; and Center for Molecular Medicine in Vienna, Austria. Simultaneously, Jason’s support for the pilot PGP site – at George’s lab in Harvard Medical School – helped it achieve many noteworthy successes.
Jason organized the Harvard PGP’s study protocols, consents and operations, including an innovative quiz format for testing and improving understanding in the informed consent process. He also led the effort to integrate the Harvard PGP platform with Google Health (sadly discontinued), and, with Jason’s guidance, Harvard PGP was the first participatory study to adopt “Creative Commons Zero” for public domain human health data, releasing an unprecedented set of public genome and health data, cell lines, and official “genome reference material“, as well as sparking numerous ground-breaking papers.
In 2010, Jason’s work extended to the Genomes Environment and Traits conference (GET), an annual conference exploring the frontiers of understanding about human biology that uniquely brought together research participants and scientists to debate the technical, commercial, and societal impacts of advances in our ability to measure and understand people and their traits. (At the first conference, a dozen pioneers of personal genomes – like James Watson, Esther Dyson and Skip Gates – were interviewed by Robert Krulwich and Carl Zimmer, while a desktop DNA sequencer hummed away in the back, analyzing the microbial DNA extracted from a dollar bill donated by a conference participant.) In recent years, the conference itself became a laboratory: GET Labs invited attendees to participate directly with studies. This led to some interesting shared experiences – like armpit swabs, sampling face mites, and the sounds of sterile kit packaging being unwrapped in the restrooms stalls.
Most recently, in March 2015 Jason and Madeleine launched a new program,Open Humans, with support from the Robert Wood Johnson Foundation and the John S. and James L. Knight Foundation. Its transformative, participant-centered approach unlocks new opportunities for research – including longitudinal data aggregation and a cohort shared between studies. The success of this program led us to change the organization’s name to “Open Humans Foundation” in 2016. While we continue to support PGP and GET programs, we believed this new name would better reflect the organization’s overarching vision, as well as expressing our confidence in the Open Humans program itself.
Madeleine is expected to begin as Executive Director on June 1. We are sorry to see Jason leave the Executive Director position, as he shifts to focus more on his work with the Icahn Institute at Mount Sinai where he leads the Resilience Project and other cutting edge clinical research endeavors at the newly formed Institute for Next Generation Healthcare. Jason will continue his leadership of the organization by joining the Board of Directors later this year.
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?
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!
Open Humans is now a community of 3,000 members…And counting!
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).
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:
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!
Keeping Pace uses personal sensor data for its research. Along with data from the free Runkeeper app, it is now accepting data from the free Moves app
Movesis 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.
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!
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: 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?
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?
Hope: What is Seeq’s relationship with the New York Genome Center?
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.
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.
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?
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?
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.
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 email@example.com.) VCF raw data is needed for third-party interpretation and/or sharing on Open Humans.
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.
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.
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.
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.
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!
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.
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!