Through blogs and comments, patients and experts explore what it takes to find good health care and make the most of it.
Does Knowing Change Behaving?
Carolyn Thomas | January 17, 2013
“Skate to where the puck is going.” That’s a common expression here in Canada, largely attributed to hockey great Wayne Gretsky. It basically says if you want to accomplish something, go directly to where it will really count. Or, as I like to translate that advice for the benefit of all you Silicon Valley start-ups working away on developing yet another new self-tracking health app: “For Pete’s sake, go find some Real Live Patients to talk (and listen) to first before you decide where you’re going!”
And as one sage pondered on Twitter:
“Why do we think self-tracking devices will work when mirrors and bathroom scales have so far failed?”
Speaking of Real Live Patients, here’s one who contacted me in response to a recent blog post I wrote about health apps for smartphones:
“Attending the Quantified Self conference: so much wonderful innovation, but it seemed utterly misdirected, at least from my vantage point as, well, for lack of a better word, as an ePatient.
“Making the healthy healthier can be lucrative which is perhaps why the innovation starts there. But easing, alleviating or at the very least not contributing to the pain of the sick requires a different sort of commitment.
“I speak from the experience of being an acutely sick patient who needed a tool to perform the task of recording my symptoms as requested by my doctor. I assumed there’d be an app for that, but there wasn’t, so I went about making my own. Because I was actively sick at the time, I knew certain things that a healthy person might completely miss – something as simple as not using sliders on a screen because they’re harder to activate (and require more thought) than a button.”
Her observations are important because they are a wake-up call for those in the business of designing health apps.
She also speaks as a uniquely qualified patient herself who happens to have the tech savvy required to design her own health app (unlike the rest of us dull-witted patients). Her insider’s awareness of practical preferences common to certain patient groups (no sliders on a screen, for example) should already be common knowledge among tech start-ups, too.
If not, this knowledge gap suggests that tech-types are just not paying attention to a target market of Real Live Patients in their rush to the Next Big Thing.
Tim Bajarin, president of Creative Strategies, Inc., said as much in a TIME interview last spring:
“So many times with projects I do with other tech companies, the goal is almost always based around the technology first, followed by whether or not people really want to use it.
“Geeky engineers are dazzled by the technology at their disposal and often create something because they can.”
And creating something just because they can is considered to be a pervasive hallmark for many working in health care self-tracking technology.
We know, for example, that only 5% of apps (including health apps) are still in use 30 days after downloading. Perhaps that’s where the health tech start-ups should focus some attention?
Susannah Fox echoes the “skate to where the puck is” motto with her advice: “Follow people where they’re already walking.” She’s the Associate Director of Digital Strategy at Pew Internet & American Life Project. In her acclaimed presentation to the Connected Health Symposium held in Boston in October, she shared a compelling story about the first night of her company’s telephone survey on health care self-tracking behaviours. A Pew surveyor happened to call a person living with diabetes that evening, who listened to the survey questions on self-tracking devices, and then warned:
“You really don’t have a way for me to express to you how I use my device.”
Pew surveyors were thus able to correct survey questions that until then had simply not reflected the real-life experience of their respondents for the remainder of their research project. This shows how quickly things can change when it’s really important (in the public relations field, we used to call this being “nimble”).
Had that single response from that one single patient been ignored, the rest of the survey’s results would have likely missed a significant chunk of valuable feedback from Real Live Patients.
Back in Boston, Susannah also quoted Kim Vlasnik, who was diagnosed with Type 1 diabetes when she was just six years old. She blogs at Texting My Pancreas, where she wrote this important message:
“It’s not enough that we have to live with the disease itself, we also have to live with data management as well.”
Being able to manage one’s data about a chronic disease is likely the most important reason that those who design data-collecting technology must consult with those who actually do need their data managed. (Sounds like a no-brainer, I know, but it seems patently obvious to me that some of these health tech start-up hypemeisters I met while attending Stanford University’s Medicine X conference last fall quite simply have no clue when it comes to understanding the world of Real Live Patients).
Does data management automatically mean making behaviour changes based on knowing the data? For some patients like Kim, absolutely. And Dr. Eric Topol, a cardiologist and director of Scripps Translational Science Institute, told The New York Times last February that he is already seeing companies finding ways to hook medical devices to the computing power of smartphones. Devices to measure blood pressure, monitor blood sugar, hear heartbeats and chart heart activity are already in the hands of patients, and more are coming.
For non-patients, however – or the “worried well”, as physicians like to call them – this careful tracking and sharing of every possible bit of personal data from weight to sleep or mood or even (yes, indeed) computer keystrokes, such obsessive behaviour may represent what Massachusetts physician and author Dr. Marya Zilberberger describes like this:
“The self-monitoring movement is just another manifestation of our profound self-absorption. And when you measure something, presumably you have to react to it.
“Is the hope that this constant self-monitoring will change our behavior? Just look at how decades of focus on diets and weight have fared.
“In fact, it feels to me that this fixation on blow-by-blow narrative of our ‘health’ is quite the opposite of what real health looks like.”
And as health economist Jane Sarasohn-Kahn explained recently, although over one-third of North American consumers will buy new fitness technology like pedometers, calorie trackers, fitness video games, digital weight scales or heart rate monitors in the next year, most of these potential buyers already consider themselves to be in good or excellent physical health.
Consider the Quantified Selfer I met at Stanford in September. He had tracked his own daily stress levels for four years, synching his data with his Outlook calendar so he could tell precisely where he was and what he was doing when his blood pressure/heart rate/temperature spiked. What he learned from this 4-year experiment was that there were two key activities that appeared to increase his stress level:
driving in rush hour traffic
going to meetings at work
You and I could have saved him four years of self-absorption by advising him of the bleedin’ obvious in the first place – but more importantly, my question to him would be: realistically, what are you going to do once you have accumulated and graphed four years worth of earth-shatteringly important data like this? Quit going to work?
Writer James Wolcott, in his recent Vanity Fair piece about self-tracking, described this kind of obsession as “cocooning compulsive self-trackers inside their feedback loops, and subtracting emotion and serendipity from the human equation”. He also teased:
“I, for example, have begun counting the number of Diet Pepsis I consume per day along with the number of times I pee, because I detect a distinct correlation.”
Alexandra Carmichael is one of the founders of the self-tracking site CureTogether. She recently explained why she decided she had to stop self-tracking (up to 40 different things about herself each day):
“Each day my self worth was tied to the data. One pound heavier this morning? You’re fat. Skipped a day of running? You’re lazy. It felt like being back in school. Less than 100 percent on an exam? You’re dumb.”
Consider also this cautionary warning from New York physician Dr. Jay Parkinson (dubbed by Fast Company as “The Doctor of the Future”). In his blog post called“Why Health and Social Media Don’t Mix“, he wrote:
“There is a very, very small subset of people who want to document their life according to their health – the Quantified Selfers.
“But this group is tiny because it’s just data geeks who are obsessed with data. They are people who truly believe data changes behavior.
“Data gets old after a while. After about a month, for those who are not obsessed, it becomes meaningless. That is, unless you have an obsession with data.”
Even for those you might consider to be the ideal candidates for obsession about their own health data – Real Live Patients themselves – consider this final expert opinion from my blog reader/patient:
“Fundamentally, sick people are the LEAST likely to be self-quantifiers. We just want to be able to bitch about traffic, buy groceries without fainting, and be annoyed at our kids like we used to!
“We, in fact, relish the thought of NOT obsessing about our health, to take it for granted like we do, say, gravity.”
Q: Does self-tracking make you more likely to change lifestyle behaviors?
More Blog Posts by Carolyn Thomas
Carolyn Thomas is a heart attack survivor and a 2008 graduate of the annual WomenHeart Science and Leadership Symposium at Mayo Clinic in Rochester, Minnesota. She was also named by “Our Bodies Ourselves” of Boston in 2009 as one of 20 inductees from seven countries acknowledged as “Women’s Health Heroes” for community activism in promoting women’s health. This post originally appeared on her Heart Sisters blog. She also writes at The Ethical Nag: Marketing Ethics for the Easily Swayed and you can follow her on twitter at @HeartSisters or @TheEthicalNag.
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