Emerging Trends in Biosample-based Research: Mobile Technologies, Citizen Science, and Crowd-Sourcing Studies
The cost of conducting large cohort studies has become prohibitive, yet cohort studies are critical for research into biomarkers, diagnostics, and new therapeutics. Is the technology to collect the data needed for this research already available, but we simply haven’t developed a process to put it to use?
Mobile technology has already had a great influence on data collection and analysis in such fields as astronomy, climate, history, and archaeology, as well as biology—WildLab, iNaturalist.org and Project Noah all use iPhone apps to track wildlife and related phenomena. Closer to home, “citizen scientists,” empowered by “crowdsourcing” (web-based recruitment), health data sharing platforms, and mobile technology, are already changing medical research. (Cloud-based cohort study design pioneer Dr. James Lacey has also recently publish an eBook on this topic on our blog).
We tend to forget that the professionally-trained, PhD-credentialed researcher is a very recent phenomenon; the potential contribution of the citizen scientist, via mobile devices and online registries for collecting health and medical data, has only begun to be appreciated. Consider:
The Michael J. Fox Foundation recognized an opportunity to collect data using smartphones and leverage this data to address some of the challenges of Parkinson’s Disease (PD). The foundation then issued a “PD Data Challenge” offering a dataset and a $10,000 prize to the crowd sourcing team that generated the best proof-of-concept for using mobile technology to solve large scale problems in a fraction of the time, for a fraction of the cost. The winning proof-of-concept was submitted by a group at the University of Trento, Italy, using their LIONsolver platform.
An even bigger trend in data collection is crowd-sourced research, of which the two biggest players are currently 23andMe, and PatientsLikeMe. Both support researcher-organized studies. 23andMe is a personal genotyping company, with more than 100,000 subscribers. PatientsLikeMe, a for-profit company, built a health data-sharing platform that allows patients to provide their data to researchers and connect with other patients.
In June of this year, PatientsLikeMe teamed with the Center for Assessment Technology and Continuous Health (CATCH), a collaborative effort between Massachusetts Institute of Technology and the Massachusetts General Hospital in Boston. According to the news item posted on the PatientsLikeMe website, this teaming arrangement will allow researchers to “combine data and develop models for rapid translation from the lab to the bedside to the large-scale vertical network.” The company is also moving toward integrating mobile technology: profile charts of various elements of the PatientsLikeMe site can be seen on iPad and iPhone, and in the near future, with mobile technology, patients themselves can become key collaborators!
It is noted that crown-sourced research sites are currently “data-only” platforms—these entities are not collecting samples for biomarker or other specimen-based research (although one citizen science genomics study adopted the strategy of having participants submit the results of standard blood tests, performed at the volunteer’s expense, by PDF.)
However, consider the Health eHeart Study, a project of the University of California at San Francisco (UCSF), the American Heart Association, and several technology partners. Health eHeart is conducting a decentralized cardiovascular study using the internet, mobile apps, sensors and links to electronic medical records to collect real-life and real-time data to study risk, prevention, and treatment of heart disease. The study is scalable, allows for rapid selection and randomization of particular patients to intervention trials and sub-studies, and is also serving as an opportunity to develop and rigorously validate new sensor and mobile health technologies.
The value of biospecimens depends on both their molecular integrity and their associated data. Given the prohibitive cost of cohort studies, is there a better way to collect the needed data? A survey by the National Academies of Sciences’ Institute of Medicine showed that more than 90 percent of respondents were willing to share their personal data with doctors, researchers, and other patients if they thought it would help the present or a future generation. As the Health eHeart website points out, credit card companies can alert you when your card has been stolen. Why can’t we alert patients to elevations in blood pressure before they need hospitalization? We can remind participants to provide updates and complete health questionnaires. Why can’t we ask citizen scientists to donate blood samples as well?