“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.”
- Self-tracking tech revolution? Not so fast. . .
- “Fewer numbers, more life experiences”
- Can self-tracking drive you crazy?
- The Quantified Self meets The Urban Datasexual
- When does mindfulness become mind-numbing?
- Public humiliation as self-tracking motivation
- Seeking Social Solace: Why aren’t heart patients online?
- Dr. Sherry Turkle: “I share, therefore I am”
- When the elephant in the room has no smartphone (from my other site, Heart Sisters)
- Is your life as awesome as you pretend it is on Facebook?
- “Distracted Doctoring” – updating your Facebook status in the O.R.
- News flash: smartphone users obsessively check their devices
- Why some people should avoid social media completely
- Why narcissists love Facebook
- Why you should put the damned phone away
This article was also republished on Prepared Patient Forum on January 17, 2013; excerpts also quoted in Two Thirds of Americans Now Track Key Health Indicators on EverydayHealth, January 28, 2013
.Q: Does self-tracking make you more likely to change lifestyle behaviours?
You have done it again. Brilliant article. Plenty to reflect on. Hope you are well and I look forward to reading your next insightful piece.
Ps. In a good mood this morning because my bgl on the iphone is at target!
Nice to hear from you again, Len. Okay: what’s bgl?
Blood Glucose Level……diabetes. Have to say monitoring with an iphone app is very helpful. Will be in touch soon as website is slowly crawling to a launch, dedicated to emotional issues for heart patients, their family, carers and health workers.
Still recommending your site to Aussie audiences.
Thanks for clearing that up, Len! Good luck with that website, and thanks also for your support.
An excellent piece, and your observations of misdirected app design are right on target.
That degree of self-tracking sounds much like anorexics I have known, and imop represents obsession spillover more than health. Count me among those who would rather just enjoy my workouts and putter about.
On the other hand, the realities of clinical practice force some of us into both tracking and medical research with Dr. Google. For years my docs dismissed my concerns and reports with comments like, “Well, aren’t we all getting older?” Only got attention on one front when I began tracking and therefore was able to confront them with extraordinary numbers. It took months of truly obsessive data collection to ferret out a few diagnostic threads, and some of that has led to useful measures.
However, at my HMO, many docs consider the case closed if they have eliminated the narrowest possible interpretation of my latest diagnostic suggestion, no matter that the underlying problem persists. And so, in my rather low-tech manner, I continue to juggle behaviors and data, in hope of finding the cause.
Good points, Kathleen, and yet another reminder about how patients (i.e. not just the “worried well”) can benefit from tracking health data – in either high or low tech ways.
Great piece, Carolyn. I’ve long had mixed feelings about self-quants. I’m not a big self-quant myself: I weigh myself regularly; check my BP a few times a month (more if it’s drifted up, which is usually because I’m not getting enough sleep or because my exercise has lapsed); and that’s about it. When I was trying to lose weight a few years back, I did use an app that tracked my calories in minus calories out, using a decent database of foods, both whole and prepared. And that actually helped.
But honestly, the thought of doing anything more than that — unless I absolutely have to — bores me to tears. (BTW, I’d pay good money to sit next to you and Stephen Wolfram — though you’d probably pay good money to flee the room.) What’s more my health care providers have almost universally told me that there’s little benefit — and possibly some harm — from paying more attention than is warranted.
Two things about your observations struck me.
1) The folks designing these apps understand *data* but not *people*.
2) individuals with chronic conditions want to pay as little attention to their “numbers” as possible, so that they can have a reasonably normal life.
I’m afraid there are some highly paid medical specialists who’ve found a second home among the digerati who are as guilty in their own way of these mistakes as the bright young coders they like to spend time with.
One last note: This discussion brings to mind the notion of “universal usability” in the design of all sorts of things, from apps to urban spaces. Design for the most vulnerable and least sophisticated, and everyone benefits, whether they believe it or not.
Hi Ed – you’ve got it! Those two key points you’ve mentioned are at the crux of my impatience with the hypemeisters. Thanks so much for sharing your perspective here.
Good piece. I always felt that the proof that these apps and the like won’t change behaviour was, as in one of your quotes, the failure of the mirror and scale to reduce obesity – and these have been around for 50 years or more.
That being said, at certain points of my treatment, I found daily blood pressure and weight checks gave me a sense of being more on top of how things were going, beyond the all important qualitative and other indicators. I have also become enamoured of my Fitbit as it tracks my activity and sleep automatically, and reminds me to keep active through the psychological trick of badges etc. But objectively, I am active so it is more ‘preaching to the converted’ than changing behaviour.
My sense is that more work – or use of existing work – on the psychology of behaviour change and how to ‘nudge’ change (to use Kahneman’s and Thaler’s term), would even be better than talking to users (although that is needed to). I see that Fitbit has done a bit of that and it is disarmingly effective – if I am close to getting a ‘badge’ for 25 sets of stairs climbed, I will go up and down a number of times to get the ‘badge’. Silly but it works!
Agreed! Or, as Pew Internet’s Susannah Fox likes to say (and as every woman knows), the “skinny jeans” in her closet are an effective self-tracking tool, too.
Thanks for ‘weighing’ in here, Andrew. (*groan*)
Well, Carolyn, this has been quite thought provoking. I am not one of your many highly motivated, health oriented readers who seem to be here in abundance. Can I buy a ticket and join? I need to, since I don’t do almost any of those healthy things which the human body loves, such as eating right, exercising, sleeping regularly and enough, and…. And I need to join you all since I haven’t figured out how to do it on my own. I am your perfect test subject: the person who needs motivation!
Here’s my experience using an App. My App is a pencil and a sheet of paper. Low tech app. I have learned with my recent introspection that it is not a motivator for me except in a very minimal way. When graphing, or just documenting how I’m doing in my effort to improve some aspect of my behavior, I do feel like it motivates me a little if I see some success. The App gives me something tangible to see or to show others how well I’m doing. A good old attaboy and a sense of pride. I mostly feel its positive effect, though, after I’ve already succeeded.
Then there’s the other side of the App experience: failure. With failure in my efforts, my graph is a huge, visible, horrifying billboard announcing to anyone in sight of it of what a loser I am! I am so embarrassed! How obvious it is to everyone that I screwed up! The very FIRST thing I always do whenever I give up is to GET RID OF THE EVIDENCE! Rip that #$%# up and throw it away! I feel so ashamed, especially with the chart there for me and everyone to see, that I think it’s harder for me to try again than it would have been if I hadn’t used a chart at all. By not using a chart, if I failed, I could fail privately, and then get up and try again.
To summarize, Carolyn, my experience with apps is this: get rid of them. I am trying again, I am not making a stupid graph, and I am not telling a soul! shhhh
Thanks for this, Bev. Whether we’re talking about high- or low-tech self-tracking, you have confirmed (as Jane Sarasohn-Kahn explains above) that, although one-third of 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”. My next post deals with the emerging (and creepy!) trend of deliberately using humiliation and shame as a motivator in self-tracking devices.
Pingback: My Lymphoma Journey
Pingback: Health Tips