Re:Ask HN: What medical datasets do you need?
by rosegold on Sunday April 09, 2017 @03:12PM
(#14073844)
For many autoimmune-related conditions patient’s symptoms also appear to fluctuate randomly, with symptoms such as pain and fatigue coming seemingly out of the blue. This includes chronic diseases such as Lupus, Rheumatoid Arthritis, Fibromyalgia and a long tail of other conditions [1].
People with these lifelong illnesses typically experience a roller-coaster of recurring symptom flare-ups, wreaking havoc with their lives. Yet there are patterns to the flare-ups. This is an opportunity to make a big difference for millions of people [2].
[1] https://www.aarda.org/disease-list/
[2] https://www.aarda.org/autoimmune-information/autoimmune-stat...
Re:Ask HN: What medical datasets do you need?
by mclide on Monday April 10, 2017 @05:01PM
(#14082513)
The key to make sense of the data for these diseases is a record of patient’s symptoms. Assembling useful datasets is not only a question about access, but also about resolving human factors to successfully collect the essential information from patients.
A major challenge is to get a large number of patients to continuously track their symptoms. Most want to know what’s in it for them. It takes substantial incentives for people to regularly report outcomes and use wearables for data collection. Until we can make the marginal cost hit zero, they need to benefit from their efforts and investment, preferably instantly.
CFS is interesting because:
a) Patients' symptoms appear to fluctuate "randomly" but are actually typically a complex function of genetics, blood markers, exercise, diet, medication and other factors.
b) There is considerable low-hanging fruit for pattern recognition, since despite the prevalence of the disease almost nobody has done serious ML work in this space.
c) Huge market opportunity - prevalence is comparable to HIV, and specialists often cite CFS as causing more disability [4] [5].
[1] http://simmaronresearch.com/
[2] http://www.nova.edu/nim/research/mecfs-genes.html
[3] https://med.stanford.edu/chronicfatiguesyndrome.html
[4] https://consults.blogs.nytimes.com/2009/10/15/readers-ask-a-...
[5] Dr. Daniel Peterson (Introduction to Research and Clinical Conference, Fort Lauderdale, Florida, October 1994; published in JCFS 1995:1:3-4:123-125)