Citizen Scientists Help Researchers Track Disease

This post is based on the latest episode of the SciStarter podcast, Citizen Science: Stories of Science We Can Do Together! In it, host Bob Hirshon talks with researchers reaching out to citizen scientists to help track infectious disease, create a national bank of biosamples and better understand neuromuscular mobility issues.

Listen here: Citizen Science: Stories of Science We Can Do Together!

Doctors don't know what they don't know. Does a patient's suite of symptoms indicate a common disorder, despite some inconsistencies? Or might it indicate a rare disorder, or even a newly emerging disease?  Is the best course of action to treat the most likely disorder, to order a battery of expensive tests to rule out the rare disorder, or even to refer the patient to a psychiatrist for evaluation of the unusual symptoms?

Unfortunately, the foundation of data upon which these decisions rest comes from a vanishingly small percentage of people. Even the largest longitudinal studies, with tens of thousands of subjects followed over decades, vastly oversample a tiny swath of humans – among other distinctions, the volunteer pool is overwhelmingly white and male – and this sample is not representative of the general public.  In addition, the data trickles in slowly, over many years, and that's not nearly fast enough to spot a rapidly spreading new contagion.

Now scientists are turning to the public, and the ability to find volunteers and gather information digitally and remotely, to improve the situation.

In 2015, the National Institutes of Health launched an advisory committee on precision medicine to examine how the medical community might better diagnose and treat individuals, rather than "average patients." Their work led to the All of Us Research Program: an effort to gather data from a million Americans representing a wide range of genetic, cultural and socioeconomic histories, and a representative range of environmental factors, including location, diet and lifestyle.

Kirsten Carroll is senior research participant recruiter for All of Us Pennsylvania. "We more and more are seeing how different we each are, in our lifestyles and our environment," she explains. "All of those different things affect our health, and if we're only taking into consideration a very small data set then we're not really getting the data that we need in order to create a healthier future."

Participants fill out an online form and then make an appointment to visit a doctor's office in the All of Us network to contribute saliva and blood samples to the project.

How we move says a lot about our health. Movement can help doctors evaluate overall health and vitality, and can provide clues into potential neurological conditions, cardiovascular disease, muscle and joint problems and many other conditions – often before the patient even takes notice.

The Mobile Health and Movement Assessment project is an effort to determine if a simple metric – how a person stands up from a seated position – can be a useful diagnostic tool when gathered via a cell phone video. Participants are asked to complete a survey form and then provide a video of themselves sitting and standing five times as quickly as possible.

Stanford PhD candidate Melissa Boswell works in Stanford's Neuromuscular Biomechanics Lab and runs the project and its mobile app, Sit2Stand. Boswell also hosts the podcast BOOM, short for Biomechanics on Our Mind. She says they've had about 500 participants so far but could use a lot more. "What I'm really excited about is finally being able to collect enough movement data that we can really learn from and leverage how we move to better understand our health," she explains.

Many people catch the flu but never seek medical treatment, which makes it hard to track emerging hotspots. To tackle that problem, epidemiologists at Harvard and Boston Children's Hospital, and the Skoll Global Threats Fund created the mobile app Flu Near You. When COVID19 hit, the team added a sister app, Covid Near You, to help doctors and researchers track that emerging pandemic.  

Now they've merged the programs into Outbreaks Near Me, a single app that lets you report your health condition weekly, sharing any symptoms of possible infections at the early stages. Autumn Gertz is project manager with the computational epidemiology lab at Boston Children's Hospital and manages the Outbreaks Near Me project.

"One of the goals of outbreaks near me, and the new integration of the sites built on newer technology, is that if there was another emerging disease, we'd be able to track that pretty quickly," she says.

This podcast is brought to you each month by SciStarter, where you'll find thousands of citizen science projects, events and tools! It's all at SciStarter.org. If you have any ideas that you want to share with us, and any things you want to hear on this podcast, get in touch with us at info@scistarter.org.