We've built a system that allows us to translate difficult to read research abstracts and convert them into 4 to 8 bullet point descriptions that are readable by the common person.
It's like Blinkist, but for complex research.
Our backend consists of a ton of med school PhD's and researchers.
I myself had an autoimmune disorder for 10 years, well I still have it, but I've been in remission for the last 2 years. Making sense of the research out there is a tall order without an organic chemistry background. When I was first diagnosed, I ended up spending hours trying to read research I barely understood, but that was relative child's play for a PhD to clarify.
It's called Ulcerative colitis and has no known cure. Some of the most intriguing research that I'd wish I had been cognizant of and had a way to read is this article(Http://bit.ly/fodmapfree) on FODMAPS (Fermentable Oligosaccharides, Disaccharides, Monosaccharides, and Polyols Saccharrides) and their impact on those with Irritable Bowel Syndrome.
Had I known, I would have experimented with something like it to see outcomes. Keep in mind, there's no such thing as an FDA approved diet.
@datarade This looks really useful. I really like that it's human powered since AI attempts at this I've seen didn't work so well. I really hope it also addresses the quality of the particular paper (such as size, whether the findings are preliminary, whether other papers mostly support or contradict the conclusion of this paper etc.), since this is very important metadata.
@ghromis Thanks for the feedback.
For our tracker where you can tell us which disease to monitor for new research, our plan is to rule out low quality journals. Unfortunately, the methodology for defining low quality is somewhat consensus driven. We hope to change that over time with more feedback from our writers. (Med School students and PhDs).
Thanks for taking the time comment. Very insightful. Will share with our writers to see what they think on the metadata notion.
@fotoflo It's free.
If we observe a pattern of a student posting the requests, we'll inquire to make sure it's not for homework.
Our number one priority is sick patients, their families, and people trying to make sense of complex diseases in general.
@fotoflo That being said, our turn around time will vary. As well, there's some research that's not easily translational. For example, explaining a monoclonal antibody has a ton of dependencies in biology to explain to someone.
@fotoflo We help patients aggregate their full medical records and map them against a huge list of clinical trials criterion.
10 years ago, when I aggregated my own records, it cost me several thousand dollars. As well, there was no viable way to search for clinical trials. It was tough. As well, most patients don't know generic drug names and/or regimens their on.
Fast forward to today, there's technologies that allow us to aggregate our medical records (partly motivated by the notion of Population Health and the new Healthcare system) and as well a robust clinicaltrials.gov site that makes it easy to search.
As someone with the same autoimmune as Kumar, learning that no one will ever care about or know more about your health than you creates a difficult position when nothing is written for you to understand—this could be a great resource for those that are sick and their loved ones.
@airjoshb Did you find any research articles that were particularly helpful when first diagnosed with UC or was it all inaccessible from a readability standpoint.
Most research is purposely written for other researchers in the field.
@datarade My case has been pretty extreme so it has left me with more questions than answers unfortunately. Funny enough, I today finished writing an article about health concepts that really shifted my thinking in 2015 on Medium. For specific research, my inflammation, particularly CRP levels have been off the charts high with no explanation and no treatment had really brought them under control. This paper on targeting mitochondrial health, Interleukin levels and NLRP3 http://bmcmedicine.biomedcentral... combined with one that I can't seem to find right now connecting CRP inflammation with Interleukin levels led me to design a treatment that had a massive effect on my daily health as well as reduced my CRP levels by 80%.
@datarade this is pretty deep-dive stuff and most people dealing with IBD would likely never find themselves there, but it was the clearest example to me of research that I had to dig into heavily to find a way to address some of what was going on with my health and got results from those efforts. Overall, my experience leads me to believe that those with IBD have severely damaged (or depleted) mitochondrial function and getting that back on track can help tremendously.
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