While crowdsourcing for the general population might mean getting on Facebook and asking friends to recommend a plumber, reading reviews on Yelp, or contributing information to a Wikipedia page, medical researchers are now using crowdsourcing to save research time, expedite diagnoses, and pursue groundbreaking discoveries powered by new technologies.
Explore This IssueJanuary 2019
In 2014, The Michael J. Fox Foundation for Parkinson’s Research provided smart watches to study participants with Parkinson’s disease to track their movements and the management of their illness. In 2015, The American Heart Association (AHA) and the Patient-Centered Outcomes Research Institute (PCORI) released a new best-practices guide that endorsed crowdsourcing as a way to “… accelerate medical research and improve global cardiovascular health,” according to an AHA news release. The guide, Crowdsourcing Medical Research Priorities: A Guide for Funding Agencies, is the work of PRANCCER (Precision Medicine Advances using Nationally Crowdsourced Comparative Effectiveness Research) and a joint initiative of the AHA and PCORI.
And, last year, Apple released ResearchKit, an open-source software that runs on the iPhone and can make use of the phone’s sensors to collect data such as daily step counts and heart rates for research purposes. The software can also be used for facial recognition for autism diagnosis and to track seizures, among other things. Medical researchers can use ResearchKit to develop a variety of apps that create tools such as consent forms, real-time tasks, and surveys with modules that can be customized and shared. The software also works with wearables like the Apple Watch, which, like other smart watches, can monitor users throughout the day. For airway disorders, for example, otolaryngologists might employ wearable technology to track study participants’ exercise tolerance or how much they sleep.
Beyond collecting patient data, physicians and researchers are using the power of the crowd to gather expert opinions and delegate microtasks to large groups of people, among other things. Karthik Balakrishnan, MD, MPH, an otolaryngologist and pediatric airway disorders specialist at the Mayo Clinic in Rochester, Minn., has used crowdsourcing to consult with peers, patients, and patient’s parents, delivering surveys on their experiences at the clinic or the hospital and using that data to reach a consensus and improve the quality of both visits and treatment.
Dr. Balakrishnan first became interested in crowdsourcing when he heard innovator and patient empowerment expert Lucien Engelen speak at a conference about crowdsourcing the locations of automated external defibrillators (AED) throughout the Netherlands to help save lives during cardiac emergencies. Currently, Dr. Balakrishnan is working on a grant-funded project for which he recruits a carefully selected population of patients’ parents to join a private Facebook group. “We’ve selected the type of patient where the parents tend to be educated about the condition and very invested in the child’s care,” he said. He added that the purpose of this project is two-fold: The first goal is proof of concept, to show he can get useful results from crowdsourcing in this way; the second is the increased contact with parents whose children’s disease is his specialty.