Jeanne Dockins has had to live with the effects of severe depression her entire life. For thirty years she suffered with undiagnosed chronic depression; before that, her dad lived at the mercy of manic-depression, and two years ago her son was also diagnosed with bipolar disorder. But the difficulties she has endured haven’t stopped Jeanne. She built a career as an operating room nurse, took care of three sons and maintained a marriage for thirty years. It’s fair to say that she’s learned to manage her condition, and says she has become highly attuned to when she is “revving up”. But could technology manage Jeanne’s condition for her, and even identify the same symptoms in others that she missed for thirty years?
A team of researchers from the University of Illinois at Chicago (UIC) recently won the Mood Challenge, a competition that promotes technologies that provide insights into people’s mental health, with an app that deduces the likelihood of a manic or depressive episode occurring by analysing how people use their smartphone. The BiAffect app recognises some of the symptoms of bipolar disorder by sifting through behaviours like “keyboard dynamics”, so it will notice if the user is typing quickly, typing slowly, pressing down hard on the keys, making spelling mistakes or shaking the phone, and use the data to draw a conclusion on the chance of a manic episode.
BiAffect’s creators describe it as a “fitness tracker for the brain.” Thanks to the success of Fitbit we know that lots of us are happy to give our fitness apps and gizmos access to GPS to track us, or reveal details of our daily habits to improve our sporting ability. So if we’re happy to do that to improve our bodies, then why not do the same for our minds?
But even if we subscribe to the idea that apps like BiAffect are just fitness trackers for the brain, how much of our lives would we be willing to give away to monitoring technology? Would we want to track where people are going, and if people are going anywhere at all, to see if they’re depressed or showing signs of depression? How about giving access to messages or social media accounts? Just how much information is too much in the pursuit of a healthy mind?
If we can reach just 1% of iPhone users…
Like Jeanne, the creators of the BiAffect app also have a personal relationship with bipolar disorder. One of its creators, Peter Nelson, professor of computer science and dean of the UIC College of Engineering, has a son who suffers from the disease.
I have seen cases of extremely brilliant students facing the challenge of bipolar, seeing some tragic but also triumphant outcomes and this is a big motivating factor for me
“He has been my inspiration and motivation for this work,” says Nelson. “Additionally, as an educator and UIC Dean of Engineering, I have seen cases of extremely brilliant students facing the challenge of bipolar, seeing some tragic but also triumphant outcomes and this is also a big motivating factor for me.”
Working alongside Dr Alex Leow, associate professor of psychiatry in the UIC College of Medicine and associate professor of bioengineering and computer science, Nelson’s BiAffect app serves as an early warning or diagnosis system for users, and means that patients and professionals don’t have to rely on subjective and inconsistent feelings to make a diagnosis. According to the charity Mind, one in 50 people in the UK will develop bipolar disorder at some point in their lives; Nelson points out the good that a technology like BiAffect could do for millions of bipolar sufferers with iPhones.
“On some metrics an iPhone 7 has more than 10,000 times the power than an early Cray supercomputer,” says Nelson. “Let’s use this computing power and flexible user interface to understand more about our minds to help the 700 million iPhone users in the world. What if we can create a killer app that has a very positive effect on 1% of iPhone users; [that] touches 7 million people?”
Like most people operating in the area of m or mobile health, all of Nelson and Leow’s work pays the utmost regard to users’ data security and data privacy, but when your technology aims to diagnose serious conditions by tracking phone usage, it’s understandable that people may be worried, regardless of how unobtrusive it is. To comfort users, Nelson says that privacy and security are a “top priority on the BiAffect team,” and to further reassure people, BiAffect doesn’t collect GPS data because it may be possible to infer identity through location.
For anyone wanting to try BiAffect out for themselves, Nelson explains that while the team has just completed its beta testing phase, for the next few months it will be enhancing the app’s user experience design and feature set based on the beta testing feedback. Later this year though, BiAffect will be made available for the general public to download. Data will be collected from the app at this point, which will serve to further the team’s understanding of bipolar disorder and how the app can be best used.
Making patients comfortable
For BiAffect and mHealth more generally to be successful, they need patients willing to try them as well as mental health professionals who are prepared to advocate for them. But how do people who have or have had mental illnesses feel about giving access to their phone – with which we all have an intimate, almost symbiotic relationship – to strangers?
Jeanne Dockins, for one, can see the benefits, but also the drawbacks mHealth presents. Speaking about the BiAffect app, Jeanne says: “I think this technology could help many bipolar people identify the initial phases of an episode and they could initiate a protocol to de-escalate their mania.”
However, the idea that the technology could go further and monitor the full gamut of peoples’ smartphone usage doesn’t sit as comfortably with Jeanne, to say the least. “Bipolar patients need to feel respected, not controlled and monitored with a tracking device like is done on criminals or animals.”
Former CBS reality show Big Brother winner Adam Jasinski, who has had a long struggle with mental illness and bipolar disorder, agrees with Jeanne that the idea of giving access to all phone data, so things like GPS info and details on online habits and messages, would be too much to ask, although he does understand why some users who have experienced the debilitating effects of depression would be willing to do that.
“I feel this could be beneficial for some individuals, [but] I would not allow professionals to see my online habits, GPS data, messages, etc,” says Jasinski. “I think that is just opening doors that misdiagnosis, paranoia, and the negative affects it could have would outweigh the benefits. I can imagine a lot of people, myself included, would feel a deep sense of violation, even though the mental health professional is there to help me.”
While Jeanne and Jasinski see the benefits of using technology to predict depressive behaviours, with Jeanne saying she would like an app that indicated when she was “revving up” or showing signs of experiencing a manic episode, they both indicated that there is no replacing face-to-face conversations with trained professionals, especially when it comes to treatment.
“Personally, I would, and always will, prefer a face-to-face conversation with a trained professional than leaving it to a mobile application’s algorithm to produce possibly incorrect information on my mental health,” says Jasinski.
A tool in the therapist’s arsenal
No one would dispute that the best course of action for someone struggling with bipolar disorder or any mental health issues would be to talk to a professional. But what do the professionals themselves think about using technology to monitor mental health?
Technology identifying mental health issues would be incredibly beneficial in making an initial diagnosis as well as identifying whether my clients are relapsing
New York City based therapist Kimberly Hershenson works with clients who have experienced problems such as depression, anxiety, eating disorders, substance abuse, personality disorders and difficult relationships. She believes that technology does have a place in the therapist’s office and could be a useful tool for investigating what exactly it is that patients are suffering from.
“Many of my clients are not in touch with their emotions and have difficulty expressing themselves,” says Hershenson. “Some clients are unclear as to whether they are sad or struggling with depression. Others don’t know if they are stressed or have anxiety. Technology identifying mental health issues would be incredibly beneficial in making an initial diagnosis as well as identifying whether my clients are relapsing. This would help with medication management as well as changing treatment plans.”
Hershenson goes on to say: “The relationship between a therapist and client should be one of safety, trust and open communication. I believe no information should be off limits if we are to have a relationship of support and understanding. Getting the full picture as to clients’ symptoms will only help the client to get the proper treatment to further their life goals.”
While this isn’t exactly an endorsement of letting technology companies monitor all aspects of patients’ lives, it’s not unreasonable to expect technology that is being created to diagnose, and possibly monitor, mental health would have the same freedom to inspect patients’ behaviours that mental health professionals do. Having a therapist’s endorsement would go a long way to making patients feel comfortable about using monitoring tech, and Hershenson is certainly open to using technology as part of a carefully considered treatment plan.
“Whether it’s medication or mindfulness, technology is another avenue that would be beneficial for helping clients, which I would strongly suggest be implemented as part of an overall treatment plan,” says Hershenson.
Being open to suggesting patients use a particular piece of technology is one thing, but ultimately it means nothing if patient’s don’t want to use the technology. So how likely does Hershenson think people are to use monitoring technology?
“Those with depression often experience a lack of motivation and apathy, so they may be less inclined to do anything extra for their recovery,” says Hershenson. “That being said, those motivated for treatment who have taken the first step to getting help would be inclined to use the technology given support and encouragement from their treatment team.”