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‘Selfie medicine’ might help people take their pills — at the cost of their privacy

And what happens if they still don’t take their pills?

One of the most frustrating problems in medicine is that up to half of patients don’t take their medication properly. Researchers are now studying whether requiring patients to upload videos of them taking pills can fix this issue. And while some results are promising, the initiative is the latest attempt at a technological solution fraught with concerns about privacy, accessibility, and interactions with doctors.

Today, The Associated Press reported on so-called selfie medicine, phone apps that push people to take their pills. The patient opens the app and takes a video of swallowing the pills. The video then goes to someone at a clinic responsible for monitoring the patient. This is “already a daily routine” for tuberculosis patients in various cities, according to AP, and it is saving Houston $100,000 a year. (There, it replaces a system where nurses go to the home of a patient to see that they’re taking their meds.) The intervention is being used for opioid addiction at a Tennessee clinic and other scientists are investigating whether it will work for the treatment of hepatitis C.

Selfie medicine is trying to solve an important problem. Estimates suggest that people don’t complete medication cycles 25 to 50 percent of the time. Other research suggests that not taking medication properly, called non-adherence, can cause over 100,000 deaths per year. There’s a lot of good to be done, and a lot of money to be made, in fixing these behaviors, but we need to be mindful of the importance of keeping data safe, respecting civil liberties, and the fact that similar solutions in the past have failed.

When it comes to privacy, of course, some people may not feel comfortable taking a daily video of them popping pills. But the bigger problem with all of these electronic monitoring devices is the risk of hurting patient privacy, like if there’s a breach of medical data, for example.

Right now, selfie medicine is used for treating tuberculosis and hepatitis, but it could be applied to any medication, including drugs for mental illnesses and disabilities. Last November, the US Food and Drug Administration approved an anti-psychotic medication called Abilify MyCite. The MyCite “digital pill” has a sensor that tracks whether the patient has taken it, and sends that information to others. This, disability journalist David Perry wrote in Pacific Standard, can make it easier to force medication on people against their will, and threaten the civil liberties of people with mental health problems. “People with psychiatric disabilities, especially poor and otherwise vulnerable people, are too often forced to choose between mandatory compliance and basic freedom,” writes Perry. “MyCite makes it easier to demand that people surrender their privacy in order to conform to some artificial idea of normal.”

Another concern is what will happen if someone doesn’t upload the video every day. Everything we know about behavioral change suggests that you need outside accountability and consequences to make something stick. That’s why a third of people who buy fitness wearables stop using them after six months. Just relying on someone knowing they “should” take their selfie video won’t work any more than knowing we “should” exercise every day. A lot of solutions, like those pill sorters, assume the problem is that patients want to take their pills, but simply forget. But there are plenty of reasons other than forgetfulness that might deter someone: maybe they don’t trust doctors, or they think they’re getting better on their own. Maybe they don’t like thinking of themselves as sick, or don’t have enough money to pay for future doses. So what happens if patients don’t follow instructions?

“It’s truth serum time,” Arthur Caplan, a bioethicist at NYU’s Langone Medical Center, told the Chicago Tribune about Abilify last year. “Is the doctor going to start yelling at me? Am I going to get a big accusatory speech? How will that interaction be handled?” It’s also possible to imagine a scenario where insurers won’t pay for medication unless patients are taking it correctly, Carolyn Neuhaus, a medical ethicist at the Hastings Center in New York, told the AP.

Ease of use is a concern, too. Many people who need medications are elderly, and some of them may not be comfortable with technology. For example, they may have bad eyesight, find the app hard to navigate, or have difficulty recording video. The elderly population is a growing business opportunity, but too often, people are creating solutions the elderly won’t use. For example, one company at CES this year, LiliSmart, created a watch for people with dementia. It vibrated and showed a picture of a pill to remind the patient to take their pill. But as dementia worsens, patients could forget to wear the watch anyway.

There is one approach that has been repeatedly shown to work: making medication cheaper. (Other research, however, has shown that making drugs free can fail, too.) But there is also a graveyard of failed attempts to fix non-adherence. An analysis of studies of “reminder packaging” — like those pill containers that have days of the week on them — showed that they work only a little.

Electronic methods aren’t much better. In one recent study published in the Journal of the American Medical Association, scientists randomly assigned over 1,500 people (all of whom recently had heart attacks) to two groups. One group was the control. The other was given special electronic pill bottles that monitored their medication. Their families were notified if they didn’t take the pills and asked to provide social support. These people were even eligible to receive money if they took the pills, and they worked with staffers who monitored them. The result? Medication adherence was the same between the two groups. The amount of time until they were hospitalized again was the same, too.

None of this means that we should completely give up on selfie medicine as one of many possible solutions. But we should keep in mind that this is potentially dangerous, and there are many ways well-meaning monitoring technologies can be abandoned or abused. If electronic monitoring becomes widespread, we will need to push for stricter regulations to protect privacy and patient-doctor interactions. And we should realize that there are many different reasons people don’t take their medications, and not all of them should be stamped out with technology.