In the 21st century, data will likely drive medical research as much as lab work — if not more — and citizen volunteers might just be the best data sources around. Another example of how citizens can help came to light on Monday with a partnership between the online health care community PatientsLikeMe and the Parkinson’s Voice Initiative. Both organizations are trying to supplement traditional health care research with real-world, crowdsourced data at a scale most hospitals could never achieve.
The Parkinson’s Voice Initiative is the brainchild of TED speaker Max Little that asks individuals suffering from the disease to make a short phone call so researchers can capture and analyze the symptomatic trembling in their voices. (“This project aims to collect 10,000 sustained phonations (‘aaah’ vocal sounds) through telephone-quality digital audio lines,” its web site explains.) If the project succeeds in its mission to accurately diagnose Parkinson’s Disease via voice recordings, it could make early diagnosis relatively fast, easy and effective without a proactive trip to the doctor.
PatientsLikeMe takes a somewhat different approach, instead offering everyday people the chance to connect with others battling the same medical conditions. When users share their stories, medical history, prescriptions and other data, it serves as both a platform for emotional support and for supplementing the information users receive elsewhere with information that might be more applicable to them. PatientsLikeMe also aims to analyze user data to spot trends in disease or treatment regimens that could assist in further research — something it did in 2008 with regard to a new drug prescribed to patients with ALS.
But these are just two examples. Recently, I wrote about the need for more thorough and open access to genomic data from cancer patients. Earlier this year, we wrote about calls to generally donate everything about your health — from medical records to your exercise regimen to the food you eat — in order to build a massive data bank that could help draw new correlations between why illness happens.
Anyone with a mobile phone can contribute to general medical research via platforms such as Ginger.io (see disclosure) or help track — and better diagnose — skin cancer by snapping photos of questionable moles via SkinVision (formerly Skin Scan). The USC Center for Body Computing wants people using iPhone heart-monitoring devices to send their data so doctors can try to predict heart attacks well before they happen.
If communities like PatientsLikeMe are more your thing, there’s also Alliance Health Networks, which is analyzing data from its condition-specific communities against medical research from Medify. A Las Vegas-based startup called Lucine Biotechnology is trying to be PatientsLikeMe for women’s health. Or maybe we can all just take a few minutes to post reviews of our doctors and health care providers in order to increase transparency and enable some legitimate price-performance comparisons.
Health care organizations and medical researchers are embracing big data, but as promising as their work is, it’s still largely a case of them working within their own silos of data and within the constraints of HIPAA and other regulations. At some point, citizens might have to undertake a little effort and volunteer their data in some form if we they really want to jumpstart the next generation of disease management. The good news is there are plenty of avenues through which they can contribute.
Check out Parkinson’s Voice Initiative founder Max Little’s TED talk below:
Disclosure: Ginger.io is backed by True Ventures, a venture capital firm that is an investor in the parent company of this blog, Giga Omni Media. Om Malik, the founder of Giga Omni Media, is also a venture partner at True.
Feature image courtesy of Shutterstock user wongwean.