“If you want to go quickly, go alone; if you want to go far, go together.” African proverb
The idea that we can go farther as a group is not a new one. Many hands make light work, as the Mennonites say, and this is especially true for large-scale research initiatives in medicine.
Founded in 2008 by Daniel Reda, a bio-IT entrepreneur and Alexandra Carmichael, a research affiliate at the Institute of the Future, Cure Together works directly from this idea that two heads (or thousands of heads!) are better than one. Crowdsourcing information from thousands of people across the globe, Cure Together is a place where individuals can log on and share information about hundreds of different medical conditions. This open source, large-scale information gathering tool is just one of many that is using large amounts of data from thousands of patients to improve diagnostics, research, and treatment of many diseases.
The idea for Cure Together came about when one of the founders, Alexandra Carmichael, was frustrated by a ten-year struggle with chronic pain.
Relief from pain came only after tirelessly combing the internet and many visits to specialists. Carmichael wanted to help others find relief more quickly. Cure Together focuses on chronic pain, asking people to log on and share symptoms, diagnoses, and treatments. Starting with just three pain conditions in 2008, Cure Together expanded as people wrote in, asking for their conditions to be added to the database.
For many people, chronic pain can be a source of embarrassment. Often termed an invisible illness, those who suffer from conditions like fibromyalgia may not want to share their pain with others. Cure Together believes that this embarrassment can be a genuine risk to health, preventing people from getting the treatment they need.
Users of the Cure Together database log on and share their conditions and treatments privately.
This data is protected and anonymous, but the aggregated data is available for anyone with an internet connection to view. While this makes some leery of participation, 15,000 members in 112 countries are actively contributing to a knowledge base of 625 different conditions. While there may be plenty of information about these 625 conditions already online, Cure Together brings this information together in a qualitative, structured way that is more valid than anecdotal data gathered from a variety of sites.
The reliability and validity of the data is such that many universities and research organizations are now opting to partner with Cure Together to accelerate the pace of discovery and connection regarding chronic pain. Carnegie Mellon, Drexel, Stanford and Emory University, as well as the University of Electro-communications in Japan, have all partnered with Cure Together in the study of chronic pain.
The other part of this organization that makes it so striking is what it studies.
Chronic pain disproportionately affects women, yet the majority of research studies utilize male subjects, both in the laboratory and in human trials. This female-focused data collection is filling in a large gap in medical research, a gap that can have serious consequences for 51% of the population. Even if self-reported data is considered unreliable at times, the sheer quantity of information reveals reliable, statistically significant patterns in diagnosis and treatments that can be used by researchers and clinicians.
Cure Together was acquired by 23andMe in 2012. 23andMe is a private company that offers DNA testing, effectively mapping genes for tens of thousands of people. Combining 23andMe’s substantial funding with Cure Together’s human capital can make for a powerful tool in the fight against chronic pain.
Cure Together is international in scope, but other large-scale health initiatives are springing up around the U.S.
In California, over 100,000 people volunteered their DNA to researchers who have used that DNA to describe genetic characteristics, improve the process of genetic mapping, and link self-reported ethnicity to genetic data. This massive set of genetic data has already been used to pinpoint genetic variants that lead to prostate cancer, allergies, glaucoma, macular degeneration, diabetes, and high cholesterol.
Project co-principal investigator Neil Risch, University of California, San Francisco (UCSF) believes that the sheer amount of data can lead to connections between genes, environment, and disease:
“This is an incredible treasure trove of data. The information collected during medical care is much more comprehensive than the isolated measurements we would make in a traditional research study. By linking these clinical records with genomic data from each person, we now have the power to track down many genetic and environmental contributions to disease.”
This project, the Genetic Epidemiology Research on Adult Health and Aging (GERA), is a collaboration between the Kaiser Permanente Northern California Research Program on Genes, Environment, and Health (RPGEH) and the Institute for Human Genetics at UCSF.
Over 200,000 adults participated in the initial data collection stage that included clinical data, lab tests, and pharmacy records. The 100,000 genetic participants were selected from this group, and their medical data was merged with their genetic information. This large sample size meant that researchers not only had a massive data set to contend with, but they also had to develop more efficient ways to process DNA. This alone has led to a genetic mapping process that takes much less time than previous processes.
These two initiatives are just the beginning of this revolution in data collection, highlighting just two ways of helping people.
Social media tools are also harnessing the power of many via Twitter to alert healthcare providers to bad drug interactions or the potential for suicide. While it is true that a large crowd may move more slowly than one person, as this practice of crowd-sourcing information becomes more prevalent, there is no telling how quickly innovation and discoveries will come.
Would you be willing to participate in a crowd-sourced initiative such as Cure Together? Why or why not?