BY ALISON KENNER, PhD
When Cheryl Lansing discovered her asthma care app had disappeared from her smartphone, she was unsettled to say the least. Recommended by her health insurance company, Cheryl had used the care app several times a week for about three months before it faded into the sea of apps that had accumulated on her phone. Cheryl had not missed the app, not until I asked her for a follow-up interview to talk about its features. Part of my research for Breathtaking focused on the rise of mobile health apps, and Cheryl was the one and only person I had interviewed who mentioned using a health app. When she realized it was gone, however, a whole new set of questions emerged: Who had access to Cheryl’s data? What was the data being used for? And how could she recover her records?
Together, our quick and cursory search – coordinated over the course of thirty minutes via email – revealed that Cheryl’s asthma care app was not (as she believed) owned by her insurance company, but rather by a third party company. In the time since Cheryl began using the app, the insurance and health technology companies had parted ways. As a result, the app was no longer available online and there was no further information about the relationship between the two organizations. Cheryl was especially concerned because she had used her insurance ID to create an account in the app, and she had provided information about her pharmaceutical prescriptions and medication regimes. The feature that Cheryl used the most, however, was the daily “How are you breathing?” logbook, which allowed Cheryl to index her asthma based on her sense of breathing. There were other features that Cheryl could use, too – she could enter her peak flow reading and track when she used her rescue inhaler, for example. But Cheryl did not measure peak flow readings at home and she avoided using her inhaler unless she was having a full-blown asthma attack. In fact, Cheryl was pretty healthy during the period when she used the asthma care app.
The daily breathing prompt was most useful for Cheryl because it helped her to gauge, from day to day, what her breathing felt like. Otherwise she only noticed if her breathing was restricted on a particular day, or for a sequence of days; this was quite common among asthma sufferers I interviewed. The asthma care app, however, got Cheryl to check in with her breath intentionally, and track how her airways felt from morning to morning. The ritual of daily tracking, of course, is exactly what app designers want to encourage in users. Yet study after study has shown that health apps don’t stick long-term: After initial, enthusiastic adoption – often fueled by a desire to change behaviors – most health and wellness apps go unused. This was the case for Cheryl, who after using the asthma care app for a few months, went back to only noticing her breathing when something was wrong.
Like many people living with asthma, Cheryl’s symptoms were intermittent and seasonal. Her asthma always spiked in the springtime because of her pollen allergies, and in the summer on bad air quality days. She also had to be careful in the winter months, when cold air triggered her asthma, too. Because Cheryl had lived with asthma for most of her life – since elementary school – she felt that she knew how to care for her disease; she could sense symptoms emerging, and she knew when environmental conditions would make it difficult for her to breathe. This meant that, much like her asthma, Cheryl’s care practices had become normalized so that she rarely even thought of herself as having a disease. This is precisely what many asthma care apps want to change about asthma care: They want to remind app users of their asthma (which may be intermittent and seasonal) in order to regiment care and keep medical costs down. The problem is, as my study showed, many asthma care apps are just as fleeting and uncertain as the disease itself.
In recent years, health organizations including insurance companies, hospitals, general practitioners, university research centers, and pharmaceutical companies have rushed to the mobile app marketplace, anxious to launch platforms that will help patients, research subjects, and customers maximize preventative healthcare. It is a fine move. Many asthma care apps, for example, ask users to track peak flow readings (which gauge airflow restriction, and can be taken as an indicator of uncontrolled asthma), daily medication use, symptoms, and exposure to asthma triggers. Tracking, it is believed, can increase medical adherence and reduce the costs of emergency care. And having a record of symptom events and care practices that spans years may help app users see trends that they otherwise might only intuit. There is great potential for asthma care apps to document a chronic, often lifelong condition that may be fleeting and varied from year to year.
What I puzzle through in chapter four of Breathtaking is the relationship that emerging apps have to existing healthcare infrastructure. More specifically, I ask how these apps are situated in a system that does not always give patients enough information, where medication is prohibitively expensive, and care needs to be a continued conversation beyond a fifteen-minute clinical appointment. Does existing healthcare infrastructure have the ability to care for emerging asthma care apps? If not, what would it take to make it so? To ensure that apps with our health data do not just disappear on us; that we understand relationships between healthcare organizations and how they use our data; that apps are offered to us with robust explanations of how they can support and enhance our existing care practices?
Healthcare apps have great potential to fill existing gaps in infrastructure, but they cannot be expected to fix a broken system.
Alison Kenner is author of Breathtaking: Asthma Care in a Time of Climate Change. Kenner is assistant professor in the department of politics and the Center for Science, Technology, and Society at Drexel University.
“Breathtaking is social science at its best: experiential, explanatory, critical, and providing ways forward. Alison Kenner herself is an active participant as community social-scientist and as partner to someone who suffers disordered breathing. She guides us vividly across scales and registers.”
—Michael M.J. Fischer, author of Anthropology in the Meantime
“Breathtaking is a sweeping ethnographic account of asthma and its treatments that expertly traverses questions of lived experience, medical technology, and critical ecology as they bear on the epidemic of disordered breathing. Beautifully written and poignant, this book makes a robust contribution to our understanding of the health effects of environmental degradation and climate change, deepens the critiques of biomedicalization, and heralds the promise of complementary and alternative medicine.”
—Anthony Ryan Hatch, author of Blood Sugar