My health journey has been pretty bumpy and winding, but as much as it shocked me to learn just how crazy the medical system works sometimes, it has been a wonderful surprise to find how many people are working on solutions, and how varied the solutions are.
One of those is Patients Like Me.
Founded by two brothers (and a friend) looking to help their brother in his journey with ALS, but with a new weapon: Data.
The site is all about data. They collect data points on symptoms, treatments, conditions... tracking how well patients respond to treatments, and how conditions progress over time.
The catch is... all of the data is 'donated'. While most health organizations are closely guarding patients' medical information, Patients Like Me is asking people to open up their health history, and upload it for all to see.
Their Openness Philosophy explains that they hope to leverage this data to help researchers and medical professionals get a faster, better picture of conditions and treatments, and in return, patients also benefit from learning from other patients, and will have the same access to the same data as the researchers of what works and what doesn't.
I have to admit I am a little apprehensive about the openness. I guard my privacy pretty fiercely and am just a bit squeamish about announcing every time I have a migraine, or lose my balance, or....
But the math geek who is struggling through a complicated and difficult medical journey is incredibly excited about it. Think Of The Potential! And just the 'small' thing of being able to see how others are responding to the medicine I'm taking, their experience with side effects, and which medicine is more/less effective...
In addition to manually inputting data-points, you can connect your fitbit with steps taken and sleep quality, and there's an app that (at least on Apple), connects to some of the health info the iphone is tracking.
(Once you sign in, there are more pages you can drill-down on, in order to compare treatment options, side effects, symptoms, etc).
A couple catches --
You add conditions, and then track symptoms relating to those conditions... but as most of my symptoms fall into a nebulous 'undiagnosed' cloud, I can't figure out if there's a way to get it to let me track how dizzy I am, without an umbrella/cause for dizziness to live under. Do I just select 'MS' and then 'undiagnosed'? I wish there was an U-D category.
There were also a few times that I wound up on a page that wasn't what I was looking for.. eg: I thought I was looking at all symptoms under a condition but then found that I was doing the opposite (looking at all conditions that shared a symptom). I'd write it off as my mistake except that I found another bug when I triple-checked that I clicked on a specific condition and it took me to the wrong page.
And it seems to keep wanting me to classify 'pain' as one big group, when I usually experience very distinct types of pain that hit at different points of an episode/flare (migraine headache, burning pins and needles, crushing back pain, etc...). There may be a way to break it apart but I just haven't found it yet.
So my suggestions are:
- Clean up/debug the interface
- Allow for some sort of handing for undiagnosed conditions
- Allow the option to split some of the tracking into more specific types.
And one more: there are So Many different apps these days that will track symptoms and health data, they may need to come up with a way to pull in more data from more sources, otherwise users who are already keeping everything in a different place may be difficult to convert.
There really is so much potential for researchers, with access to so much data and such a large and diverse patient pool. But even more than that, it's a great opportunity for patients to better understand their treatments and conditions, compare their experiences, and even help influence the research being conducted and the framework researchers are using.
"Data for good" -- It reminds me of another project where researchers for a condition were asking people to send in whatever genetic test results they had (even from Ancestry.com), because it could be done so quickly and cheaply they would be able to start the next round of research much quicker and with a better idea of what they were looking for.
I feel like I've only just scratched the surface, and it's definitely a site I want to dig into, bookmark, and maybe, eventually, embrace the 'brave new world' we're in and start contributing to.
*Misadventures in Medicine
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