As the COVID-19 pandemic bears down on communities across the world, many are wondering how they can help mitigate the spread of the disease. Social distancing and handwashing are effective, but are they all we can do?
Dana Lewis thinks she might be able to help, and when the creator of the Do-It-Yourself Pancreas System has an idea, the world ought to listen. Dana famously shared her breakthrough with the world and is now recognized as an expert on the new frontier of patient-designed and community-led healthcare.
“A lot of people are worried and thinking, ‘what can I do?’ What are ways that we can use technology as individuals to help cut down on transmission in the community?”
Dana’s idea is CoEpi, a smartphone app that puts “Community Epidemiology in Action” by harnessing individuals and their networks, precisely tracking the spread of illness throughout communities. If people can be made more aware of local infections and of the health statuses of the people around them, they can make more informed decisions about where to go and who to see, decreasing both personal and community risks, and hopefully releasing some of the pressure on our healthcare system.
Here’s how it works: when you’re experiencing symptoms of illness – runny nose, fever, sore throat – you input the details into the app. The primary function is to alert your direct contacts who are also using the app. If your family and friends can see that you’ve been ailing, they may or may not decide to alter their own plans according to their own levels of risk tolerance.
“This is the app I’ve always wanted to have, so my sister-in-law, for example, can put in that one of her kids has a cold. I would be alerted to that, and I can decide how to mitigate my risk. I could decide to meet at a park instead of in their home, where I’m at less risk of picking up their illness. It’s an app that I plan to use for the rest of my life.”
The most obvious and immediate benefit will be for users with compromised immune systems. Or for those, like Dana herself, who just seem to get sick all the time:
“It’s about putting power into the hands of the individual, especially those of us living with diabetes or other chronic diseases – people going through cancer treatment or living with cystic fibrosis – who are concerned with picking something up. It gives us more power to both share and receive information from the people that we care about.”
If enough people use the app, it can begin to map the health status of an entire community. Should the app be widely used, it could potentially deliver the type of decentralized and instant data that public health officials and epidemiologists would salivate over, and that could drive superior deployment of healthcare resources.
The app can alert strangers, too. Using Bluetooth in the background to detect other nearby devices, the app will know when you’ve spent 10 minutes near another user with symptoms, and can notify you of that fact. Mindful of privacy concerns, it does so without divulging the exact location or details of the symptomatic stranger.
Others are working on similar ideas, and not all of them rely on the good will of mankind to share private information for the good of others. On March 18 it was reported that Israel has begun digitally surveilling virus-carriers and has ordered at least 400 people into quarantine after it was determined that they had spent 10 minutes within a sneeze’s distance of a COVID-19 patient. Unsurprisingly, the program has stirred controversy, and one can only imagine the outrage were the United States government to embark on a similar effort.
Dana Lewis established her bonafides long ago with the Open APS project and should be above suspicion, but nevertheless she is very aware that many consumers are distrustful of modern technology’s tendency to collect (and monetize) personal data. The CoEpi app only stores potentially identifying data on the phone itself, and not in the cloud. It will ask permission for everything that it does, and as such can be thoroughly customized. And it too will be built with open-source code, so that users with programming experience will be able to scrutinize and alter the code to their liking.
The CoEpi team hopes to launch within a couple weeks. While CoEpi will not be available in time to seriously impact the initial onslaught of COVID-19 in the US or Europe, Dana emphasized that it might actually be more applicable weeks or months into the near future, when people begin to emerge from isolation and tone down their social distancing efforts. There will likely come a time before a vaccine has been developed when society at large decides that it will tolerate the risk of resuming regular life. Offices, schools and restaurants will re-open, but the coronavirus will still be active, and still be dangerous. It is then that the extra vigilance potentially afforded by instant community health data might make a difference in stemming the tide of infection.
Even if the CoEpi app doesn’t achieve widespread adoption, Dana sees a more modest role it can play in families and smaller communities in alerting one another to the spread of less virulent diseases, such as the common flu or norovirus. We are now painfully aware of how deadly common illnesses are to the elderly and immunocompromised. Imagine, for example, a church with many elderly parishioners that may want to be more vigilant during flu season. And she hopes that in the wake of the COVID-19 pandemic, the app might help create new norms that result in more awareness of infection risks. An annual flu shot, for example – which itself represents a tiny but real contribution to community health – could become a cause for celebration over social media.
Dana has been thinking about the CoEpi App for a long time, long before COVID-19 was ever identified, and describes it as her second “dream” application.