The Intersection of Health and Openness

This is intended to be a narrative into my initial exploration into the realm of health through the lens of open modeling with the lenses Cathy Casserly has introduced through her one-week course at IIT. 

A few weeks ago, I read an article that’s stuck with me for quite some time about a man looking to develop a cancer drug through an open-source system through a repository like Github. The combination of biology and computer science is exciting and unexpected, and the challenge to big pharma is invigorating… but is his concept too radical to lead to anything substantial? That's where I stopped a week ago. Now I'm ready to take this thought forward a bit further.

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Health seems to be a big topic lately, further heightened by the recent announcement of Apple’s healthkit and the growing adoption of devices that support the quantified self movement. It’s one of the first times in history we’re starting to take random bits of data about or lives and quantify them in potentially meaningful ways to better optimize ..well.. ourselves! I’m curious to see how aggregated information from early adopters might begin to look, and what the world's response will be. Apple has already stated that they will allow data to be used for medical research (do you think people are aware of this? There doesn't seem to be a huge outcry, which is a bit odd considering the uproar that commenced with the independent Facebook messenger app.) Surely with the popularity of Apple, they can quickly amass a huge repository of user’s health information. Furthermore, this is of great interest to me because it sidesteps HIPAA constraints because patients are volunteering their information. I'll admit though, I haven't completely wrapped my head around HITECH yet. We had the great honor to talk with Dalia Topelson from the Berkman Center about this area and more and really focused on some of the legal aspects of privacy. Her comments reminded me a bit of the questions Lori Andrews raised on Monday during the discussion around ownership and design.

So what about health in open systems beyond Apple? In 2008, discussions were just starting around this interesting topic, and one article in particular really caught my interest despite it’s age, around therapy development in a networked world. The opening statement couldn’t be more true: The pharmaceutical industry is at a crossroads. The current model doesn’t support holistic integration and shared learning. The current path forward also promotes old traditions of information collection and intellectual property control; failure is bad and wasteful. What if we were to bring massive loads of personal data together to create a national repository, a health commons, to help us achieve something greater than the system? I know this happens on a small scale even with the clinical trials I've been involved in within Celiac Disease research. They're looking for additional symptoms and markers (and likely other characteristics) they can use to further understand, diagnose, and treat it; It presents itself in a ridiculously large number of ways, and treatment isn't yet available. However, those all required consent and proper authorization still.

Here: watch a funny little video about gluten I made a few years ago. Actually it's kind of funny that came up when I typed in my name and gluten into Google.

I just realized I just "released" a bit of medical information about myself here. I wonder if there's something to be said about generations and cultural shifts? For me personally, I've really embraced this part of my life though, most people know I have it, and a simple google search will turn up my name associated with any number of organizations and grassroots efforts to better support for those struggling with the disease. For example, I started a chapter of the Gluten Intolerance Group in Chicago a few years ago. I realized patients weren't getting the support they needed to live their lives after diagnosis. It's one thing to be told what to do and what to avoid, but it's entirely different to know how to survive. In short, it's not just a "food thing", it's a "life thing". You have to change your makeup, chapstick, lotion, food, drinks...you even have to be careful of when to kiss your significant other. Um, your doctor never gives you dating advice in that stupid examination room. I learned the "hard way" by subscribing to celiac-only listserv's and support groups like Celiac Sprue Association and Gluten Intolerance Group. Funny enough, doctors were showing up to OUR events in the Chicago South Loop Whole Foods to get information. Did you hear me right? octors were attending patient collectives to learn about how to better treat celiac disease.

 Still from the video, information he shared online to the community The yellow arrows are treatment points, and the line is the decreasing size of his tumors.

Still from the video, information he shared online to the community
The yellow arrows are treatment points, and the line is the decreasing size of his tumors.

Dave deBronkart asks us "WHY is the patient the most under-used resource in healthcare?? How did that happen?". It's a great TED Talk, I'd highly recommend it. I wish I could embed it here, but I'm not sure I can. I digress. He went to the doctor with a sore shoulder and found out he had cancer. He touches on the aspect of "trust" and where he looked for accurate information after diagnosis, and had around 24 weeks left to live. He went online to a community to talk to other cancer patients and they immediately gave him the low-down on what to do, what to try, where to go, what to expect (for example, don't expect your hospital to tell you about treatments they don't offer), and who to contact (and their contact information). How amazing is that with just a question or two?! Websites STILL don't give patients all of that level of information! [note: this is where my tie in to the Gluten Intolerance Group ties in]. Elegantly put, "patients know what patients want to know". Long story short, he put the numbers from his hospital's website online (wait, say what?) and is now alive today. He makes a few points about the power of patients having their own data, because "you people can't be trusted to keep it clean". He's all for getting data from behind the "damn data" and in the hands of software engineers who can personalize information just for you.

Ok, let's get away from autoimmune diseases and cancer. I noticed an XPrize that was challenging innovators to find new tools to change the conversations and diagnosis around being sick. That could certainly be of interest- but I begin to ask questions to myself... will the doctor have access to that information? Who else will? Should clinical trials be able to opt in? What if the machine has a bug? Can it get a virus and give you inaccurate readings? What kind of psychological backlash could that cause? What are the negative consequences that could come from others knowing your personal healthcare information? Imagine if one day your place of employment was able to gain access to this information, and your boss could tell if you were actually sick when you were playing hooky. How would that feel? 

XPrize isn't the only one thinking about this either. Health trackers are popping up all over crowd funding sites. Is this just a trend to ride the wave Apple has introduced? I guess time will tell, but I certainly hope this conversation will carry on and introduce better communication methods, between doctor and patient, patient and data, and patients to other patients.

To recap so far, I've discussed that patient data is becoming more open, patient communications are bettering treatment options, and there are a lot of infrastructure and privacy concerns around all of this.

Maybe the compromise is that online repositories for things like health information reside in  things like the Respect Network. Where does that leave HIPPA? I have no idea. If people start treating medical information like any other data point about themselves, I bet we'll find more information about correlations and eventually maybe even identify causations in some cases. But, again, the worry about the long term impacts of open information about yourself online is always concerning- and affects each and everyone one of us. Knowing your company's president has cancer for example, might lead his board to believe he will have his focus split, unable to lead his company in a strong manner, or any number of other things that could lead to his eventual dismissal. It could weed out minimum-wage workers from food industries if they know he or she has a contagious infection or disease (and would the company be right in making that decision?). 

This guy John Wilbanks may be on to something. He's a huge advocate for open information and makes a couple really clear points I'd like to share. This first is something people (especially doctors) ever seem to talk about. Everyone knows group chats, blogs, litservs, and more exist online. Why can't we take those models and create real-world environments to facilitate that community and communication? 

Secondly, he mentions something Cathy has stated in class as well. I feel it's something I should reiterate through large text as well. Read below at least three times.

He calls us to be naked, digitally and public. "Being naked and alone can be terrifying...but being naked in a group can be quite beautiful. It doesn't take all of us, just some of all of us"

He mentions his work in the video which I'm incredibly excited by- it's an analytic model for health that my team and I (for Larry Keeley's class) have been trying to rework to help predict the vitality of communities, and key points for intervention. It could be really exciting if Cathy would be willing to connect us to someone from his team for a discussion! They're definitely different models, but working towards the same thing: diagnostics through data aggregation.

I'm trying to keep the conversation as balanced as I can, but as I learn more and more, I realize I'm advocating to myself for a more open system, at the very least between patients and their own data, but to some degree, also patients with other patients. In another project I'm working on, we had to make the distinction between healthcare and psychosocial support for something. Maybe you can't differentiate the two. Maybe talking with others will inevitably lead to discussions about both fronts. 

Maybe I'll end with this last thought, I came across an discussion on linked in about new HIPAA rulings.. do you think they'll make much of a difference? Personally, I don't think the paper trail or having to push information on to patients is the problem- I think the problem is with communication, which means access yes, but also legibility, organization, and gathering meaning from data. Things technology is able to do in some ways even better than your doctors.

Side note, this looks really cool: www.23andme.com