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Crowdsourcing health research

CureTogether recently announced that using only patient-reported data, it has confirmed the infertility-asthma association that has previously been explored only in clinical studies.  In an analysis of 324 patients, those who report infertility are 1.9x more likely to report having asthma than patients who don't report infertility. 

Within the 34 people reporting infertility, 13 (38%) reported having asthma (the remaining 21 out of 34 specifically said they did NOT have asthma). Within the 290 people reporting quot;no infertility", 58 (20%) reported having asthma (the remaining 232 specifically reported NOT having asthma). This 38% vs. 20% relative risk is statistically significant, with a 95% confidence interval of 1.4 - 2.6.

CureTogether is "a collaboration of people from around the world volunteering to solve real problems in chronic conditions" by self-reporting and rating symptoms and treatments for over 360 conditions. The website enables people to track their health, compare their experiences to others, and make more informed health decisions based on this self-knowledge and collective wisdom.

CureTogether co-founder Alexandra Carmichael participated on a panel about "Building the Health Commons" at our HC2020 Spring Conference, during which we discussed the culture of participation, cooperation, and commons thinking that may be needed to address the challenges of the future of health and health care.  I have also blogged about Alex and self-tracking here.

IBM's vision for . . .

So says IBM.  It also proclaims:

Technology alone can't cure what ails us. But it can help those who treat our illnesses, heal our injuries, and find new ways ot battle diseases do it even better. It can also help healthy individuals to make smarter choices about their health and care.

More on the quantification of oneself

I mentioned the other day the idea of the quantified self.  While doing some research for Health Care 2020, I came across a journal article that discussed quantified self-tracking in the context of emerging patient-driven health care models. Author Melanie Swan answers the question I often struggle with: Why do people self-monitor? 

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