I am the open source patient
About a month ago a lightbulb went off in my mind and for weeks I have been grappling with how I can put my thoughts into words. Please bear with me as I take you on an adventure.
Afraid I might bury the lede, let me just blurt it out:
I am an open source patient
Are you familiar with the term "open source?"
According to a generic description on Wikipedia.com, in the world of the production and development of technology open source "promotes a universal access via a free license to a product's design or blueprint, and universal redistribution of that design or blueprint, including subsequent improvements to it by anyone."
In non-nerd language, this just means you are willing to share knowledge with other people. For free. The popular web browser Firefox is open source. The blogging platform Wordpress is an open source product. In fact, the Internet as we know it would not be possible if it was not based on the principles of open source technology.
Now with a bit of an understanding of what open source means, then you can take a guess at what it might mean to be an open source patient.
This blog is qualitative, not quantitative
This blog--a vehicle through which I share thoughts, insights and feelings about the experience of living with brain cancer--could be considered open source.
However, while this blog may be useful to people doing qualitative research on what it is like to be a patient (e.g., other patients, care partners, and family members of people with brain cancer), this blog is not much use to researchers trying to find a cure for brain cancer.
Why not?
For me to be of use to real medical researchers, they would need things like:
A tissue sample from my tumor
A blood sample
My complete medical history
And perhaps my genome
They need legitimate data to run through their systems and do science-y stuff.
I'm on a roll, stay with me...
In my real life (the part of my life not affiliated with cancer), I have friends who work for state and local government, and I have friends who work in technology and software development.
A few years back my buddy Ash started a local Code for America brigade. If you haven't heard of Code for America, it is best described as the Peace Corps for geeks. Code for America builds open source technology and organizes a network of people dedicated to making government services simple, effective, and easy to use. (Learn more about their work here.)
Code for Sacramento is an officially recognized brigade (or local chapter, if you will) of Code for America. Code for Sacramento is made up of volunteers--people who work in either government or technology, who like spending their free time contributing their skills toward using the web as a platform for local government and community service.
Fun fact: The idea of making government data widely available and easy to access is so important (and so new) that the Obama Administration is the first White House administration to create the office of a Chief Technology Officer.
When my buddy Ash was first starting Code for Sacramento one of the things they were trying to do was build a data portal with links to all of the open data available from cities around our area. I had heard from him and the other volunteers with Code for Sacramento that cities and counties in our area did not have a uniform way of sharing data with the public. As a person who worked with a variety of cities around our area I did my best to connect the people from Code for Sacramento with the IT people at the cities, and that was that.
Fast forward to January 2015...
Referring to my willingness to share my brain cancer experience, I said this on Twitter:
I love wearable health technology. I want to be an open source organism. "Here's my brain scan for all to see!" #btsm #smcsacchat- Liz Salmi (@TheLizArmy) January 7, 2015
And in response I got this:
@TheLizArmy Great ! We can do a 3D of your scan in VP Reveal. You may become one of our global "demo" patients in neurosurgery if you like ? - Jackie Schooleman (@Schooleman) January 7, 2015
After doing a bit of investigation, I found out that Jackie Schoolerman represents a European company that creates 3D models of human organs that are used by surgeons for educational purposes, or "practice" surgeries.
I liked the idea of sharing my scans for educational purposes, but I wondered if I was crazy for feeling this way. I wanted to ask other people with brain cancer how they felt about sharing their medical data.
So I went to my Facebook page and asked this question:
I've been invited to share my brain scans with a company that turns scans into 3D models that prep surgeons for surgery. The company makes money off this product, however, I like the idea of technology helping surgeons. They have to get patient data SOMEWHERE. And, I don't care if people see my brain scans. What would you do?
The response from the brain tumor community was overwhelmingly positive, with everyone saying that they would share their scans if it lead to some improvement for future patients.
And then one week later...
The quantified self
Soon after I contemplated sharing my brain scans with a European company, I was asked to emcee an event on the topic of the "quantified self." (Why I was emceeing this event is a long story... best left for another time. For now, just think, Liz with a microphone, no big deal.)
I had never heard of the term quantified self, and I figured I should be at least slightly familiar with the topic, so I Googled it and found this answer on Wikipedia:
The Quantified Self is a movement to incorporate technology into data acquisition on aspects of a person's daily life in terms of inputs (e.g. food consumed, quality of surrounding air), states (e.g. mood, arousal, blood oxygen levels), and performance (mental and physical). Such self-monitoring and self-sensing, which combines wearable sensors (EEG, ECG, video, etc.) and wearable computing, is also known as lifelogging. ... In short, quantified self is self-knowledge through self-tracking with technology. Quantified self-advancement have allowed individuals to quantify biometrics that they never knew existed, as well as make data collection cheaper and more convenient. One can track insulin and cortisol levels, sequence DNA, and see what microbial cells inhabit his or her body.
After reading this definition, two things clicked in my mind:
Yes! I totally relate to this! I wear my Fitbit all of the time, and I really love the data I collect about my movement and sleep patterns. And now, as I sleep, I can see how long I rest. Not only that, but the Fitbit can do so much more. When I walk, I can see my steps. I can track my heart rate when I push myself, and it's amazing. This also makes me think about how obsessed I used to be about using the iChemo app to track the side affects of Temodar, and how annoyed I was that there was no way to directly share that data with my physician.
Why the hell would anyone care about this data besides me?
At the event I got a chance to talk with the two presenters--Matthew Lange and Nick Anderson, both of whom are academics from the University of California, Davis.
I asked Matthew, why? Why does the quantified self matter? In his view, he saw that something good could come from all of this information. We might not realize it now, but if all of our data streams could be pulled together we might notice patterns that could contribute to solving community health problems or something even greater that we could not even anticipate at this point in time.
It was then, at that moment, I realized why the quantified self might truly matter.
My mind went to the people with Code for America/Code for Sacramento who are in search of data.
My mind went to the Defeat GBM research collaborative, where brain tumor scientists are pulling together all resources from around the world to find a cure for glioblastoma the most prevalent and malignant brain cancer.
My mind went to the Facebook conversation I had a week earlier with the brain tumor community when I asked if they would share their medical data and everyone gave an enthusiastic thumbs up.
To Matthew Lange, I suddenly blurted out:
"This term, quantified self, seems confusing. To me, we should call this data sharing 'open source.' And if we are talking about sharing data for the greater good, then we are open source people. And me... I am the open source patient."
The open source patient
Later that evening, Nick Anderson talked about people's willingness to share medical data for the purpose of the greater good. He said a good percentage of people would never consider it--it is too much of an invasion of privacy. Others are willing to share some data. An even smaller percentage of people are willing to share all of their medical history only as long as their identity is protected. He said that only 1.5% of the population would be willing to share everything.
I think I am that 1.5%.
So there. That is the really long story of what I have been thinking about for the last few weeks. That is what goes through my mind.
I am interested in where this goes. If there are other people out there who are interested in collaborating and creating a database of open source patients, I want to hear from you. I want to know what efforts are already being done in this area.
I am familiar with one other brain cancer patient who shared all of his data on his website, Salvatore Iaconesi, but his website has not been updated since 2012. Also, I think putting data out there without talking to the people who would need to access the data is a waste of time.
Code for America for health care?
So come on, open source nerds. Is there a Code for America for health care? How can we patients share our data to help initiatives like Defeat GBM?
Let's get this conversation started.
