I am clueless about many things. As in the definition: “Lacking understanding or knowledge.” As in the sentence: “I have no clue!” As in the 20+ years I spent living with a research scientist and enduring mind-numbingly torturous dinner party conversations about zinc and copper sediment in the Fraser River estuary.
That kind of clueless.
There are some things about which I do have a clue, as is true with even the most profoundly clueless among us.
For instance, with decades of experience working in public relations behind me, I know quite a bit about organizing news conferences, writing speeches, doing interviews with journalists, teaching classes in things like Crisis Communications and Reputation Management, or whipping up a media plan that will guarantee your CEO a mention on the 6 o’clock news.
And as a Mayo Clinic-trained patient advocate, I know a wee bit about cardiology in general, and quite a bit more about my particular obsession: women’s heart disease.
As such, I do have a clue about what it’s like for many of us who live with a chronic and progressive illness.
So I can’t help but notice that the difference between me and a surprising number of other people out there seems to be that I am exquisitely aware of both what I do have a clue about, and what I have no clue whatsoever about on any given subject.
I usually try to keep my mouth shut as much as possible whenever encountering the latter.
The same cannot be said, alas, of some tech-types working in the digital health field – and here’s why I dare to make that observation.
Consider, for example, that the developers, designers and hype-meisters who are making a living selling health tracking technology seem confused by the differences between the keeners of the Quantified Self movement (“Self-Knowledge Through Numbers!”) and what daily life is actually like for Real Live Patients out there.
The first group includes those outliers who genuinely enjoy tracking (and then often sharing) every possible health indicator that’s remotely trackable in life – diet, weight, exercise, mood, sleep, temperature, blood pressure, pulse, hydration, sex life, stool contents (seriously!), etc. When it comes to tracking health indicators, these folks largely represent the self-absorbed worried well.
Real Live Patients, however, are those who live every day with a medical diagnosis that can impact many areas of life which non-patients may take entirely for granted. Why is this? Because when it comes to appreciating an actual patient’s life, non-patients are often quite clueless. Well-meaning maybe, but generally clueless. See also: ‘Healthy Privilege’ – When You Just Can’t Imagine Being Sick or “We Are All Patients!” No, You’re Not.
Physician Dr. Brennan Spiegel at Cedars Sinai Hospital in Los Angeles is a self-described “technophile who loves wearables, mobile health apps, patient provider portals, and all things electronic.” But in an aptly-named recent column he called, “I’ve Never Heard a Patient Ask to Be ‘Empowered’ by Technology”, he bemoaned Technophiles (“with a capital T”) who make sweeping statements about how digital health is “transforming” medicine forever, “democratizing” healthcare for the better, and, most notably, “empowering” patients like nothing ever before.
A good illustration of this flawed hype is an overview in The Atlantic by Thomas Goetz called The Diabetic’s Paradox, in which he offers this caution to the tech vogue of self-tracking.
The original self-trackers, he explains, are people diagnosed with Type 1 diabetes. They have been tracking their blood sugar levels and diet for decades, yet according to a 2012 study, “they largely loathe the experience”:
“Self-monitoring is increasingly being recommended as a panacea for all sorts of health conditions, from obesity and heart disease to sleep and mood disorders.
“The boom in mobile devices has created an ecosystem of sensors, apps, and other self-tracking instruments, all of which are being hailed as a boon to changing people’s behavior and improving their health. A host of new companies are hoping to ride self-tracking to better health and startup wealth.
“But it’s easy to let the futuristic allure of technology obscure the fact that people with diabetes have been tracking their own health for 30 years now. They are the real early adopters here, and their jaded experience challenges those – like myself – who would argue that self-tracking tools are the salve for so many conditions.
“In short, the paradox is this: If self-tracking is so great, why do people living with diabetes hate it so much?”
It’s not just self-tracking for Real Live Patients that Silicon Valley types may be clueless about. The most recent example was this image (courtesy of the brainiacs working at a Silicon Valley company called Medrio), explaining to research clinicians what makes a good clinical trial patient. It seems pretty clear to me (and to all of the other patients who reacted on social media to this boneheaded idea of patients as pigs) that nobody working at Medrio had actually talked to a Real Live Patient before producing this piece of crass stupidity. At the height of the firestorm reaction online, Medrio was forced to issue a public apology.
This kind of clueless helps to explain why sensitive tech-types who are busily inventing the self-tracking technology that’s meant to help the very people who “loathe the experience” of self-tracking might be feeling understandably gobsmacked by such revelations.
Imagine how clueless they might feel if they only bothered to ask questions of somebody like Natasha Gajewski, the uniquely qualified Heart Sisters reader who once contacted me on a similar topic.
Not only is Natasha a Real Live Patient herself, but she happens to have the tech savvy required to design her own health app (unlike the rest of us who have no clue about this).
When she needed a tool to help her perform the task of recording her symptoms as requested by her doctor, she told me that she’d assumed there must already be an app for that already out there:
“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 insider’s awareness of practical preferences common to certain patient groups (like sliders on a screen, for example) should already be common knowledge among tech start-up types, too. If they don’t know and haven’t bothered to find out, this knowledge gap suggests that they just might be clueless.
They might also be clueless if they haven’t yet looked into the groundbreaking work of those like Dr. Victor Montori and his Mayo Clinic-based team who are studying an initiative known as Minimally Disruptive Medicine to address “the burden of treatment“ among patients living with chronic illnesses. He explains:
“A patient’s education level, literacy, state of depression, pain, fatigue, social connectivity and supports, financial status – all of these affect a patient’s capacity to do the ‘work’ of being sick.
“This workload can simply exceed capacity to cope.”
Are Silicon Valley tech-types even remotely clued in to Dr. Montori’s important work, do you think? See also: An Open Letter to Health App Developers and Their Funders.
The bottom line: people whose very careers are devoted to attracting venture capital, media hype and profits are highly unlikely to change course in midstream just because some pesky patients are trying to get their attention – unless we are prepared to speak out and help educate them whenever we see blatant examples.
They don’t need to listen to the problems of patients, because they already have the solutions.
Clueless?
Perhaps.
If only they were not quite so eager to prove it.
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Q: Have you run into examples of clueless healthcare communication/products not designed for Real Live Patients?
NOTE FROM CAROLYN: This post originally ran in The Ethical Nag: Marketing Ethics for the Easily Swayed. Read more about what I’ve learned about clueless tech types in my book, A Woman’s Guide to Living With Heart Disease, published by Johns Hopkins University Press. You can ask for it at bookstores (please support your local independent bookseller!) or order it online (paperback, hardcover or e-book) at Amazon – or order it directly from Johns Hopkins University Press (use their code HTWN to save 30% off the list price).
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See also:
“How a $5 Tim Hortons gift card changed my life“
Has industry co-opted patient engagement?
An open letter to mobile health app developers and their funders.
Sock puppetry, astroturfing, and the marketing ‘shill’ game
When the elephant in the room has no smartphone
Digital temptations: “Quantifying, tracking or gamifying everything”
Heart Sisters 
My daughter wears a Jawbone UP3 – on which we gathered three months of sleep data before finding a physician who understood Non-24 Sleep/Wake Circadian Rhythm Disorder – in a 24 year old non-blind female.
Sleep doctors missed it since she was 16.
My husband ran the data (and still does, to update the doctors) through programs he wrote to make it look like the Actigraph data (expensive to gather) which is what they believe.
When we finally found the right doctor, and gave him the plots – he immediately confirmed that we had figured out our daughter’s ‘day’ was 26-27 hours long and rotated forward every day.
That’s not the ‘worried well’ – but we used the technology.
The tech is developed for the millenial equivalent of the yuppie – but it can be used for other things. This particular one has downloadable sleep data, so we could use it to prove what I had already figured out she had.
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What a timely article! I have cause to track Type I diabetes, pain levels, and gastrointestinal problems. This caused me to finally throw up my hands and say, “Forget it”. I haven’t yet figured out a convenient way to keep track in writing. Not that I haven’t tried: using different colored pens for each disease; different notebooks; using the front and back of notebooks at the same time, using my appointment book (not enough room) etc. In recent years, I have found it a burden to treat my diseases: medicine times, checking blood sugar and taking insulin. I am having a problem forgetting at least one of my routines once every few days.
I have mentioned this to some of my doctors, and have received not a look nor a word each time. It must make them feel embarrassed that they can’t come up with a cure for this.
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Aarrrrrgh! Pauline, you are beautifully describing what Dr. Victor Montori calls “the burden of treatment” in his Mayo Clinic-based concept called Minimally Disruptive Medicine as I mentioned in this post.
No wonder you are “forgetting” at least one of your many routines on occasion! I’m not sure if it’s embarrassment your doctors are experiencing at not coming up with a cure (that’s a pretty impossible expectation for any individual doctor!) but more likely a profound lack of awareness of an overwhelming burden they seem unable to appreciate.
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I appreciate technology and the people who are adept at creating it and working with it — my husband does tech support for a banking software company and he is very good at what he does. However, I have long had issues with the medical technology that seems to dominate patient care.
I know that we’ve come a long way in many areas of disease care but I wonder if it’s worth it when it seems like the “human” side of healthcare is suffering because of it.
For instance, our local hospital has a wonderful fully-equipped emergency room with all the monitors and beepers — but it often seems like nurses and doctors don’t care that much about the patients anymore. They are just there to run the technology.
I have gone to doctors’ office visits where I felt completely ignored in the face of the computer he/she was using. My endocrinologist has a huge computer screen on his desk, and as I was talking to him and he was typing his notes, his screen dominated his attention. It’s hard to talk to someone who doesn’t even look at you and is more interested in checking your lab reports than asking you how you are really doing. He is very efficient and I’m told he is an excellent doctor “who you really want to have on your side,” but I am unimpressed with his bedside manner.
The same right now of my cardiologist who was very distracted by her note-taking on her laptop the last time I talked with her. Normally I like her and feel I can really talk to her, but not the last couple of visits, which makes me sad.
As a heart patient with type 2 diabetes, I do appreciate my healthcare team. But some patients need to feel some kind of emotional connection between them and their doctors. We need to know they CARE. Technology, while definitely saving lives more and more these days, has the negative side of being a huge distraction from human interactions. Doctors need to listen to the patient tell them what’s up, because the patient is the one who really knows how they feel. And then they should make their notes afterwards.
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Oh, Meghan. I wish every doctor and nurse and healthcare provider could read your words here… Thanks for this…
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This is brilliant. My son (a teen) has to track all kinds of stuff. And I have to find ways to help/ motivate him to do it. Whatever is out there is either junk, too hard, or not appropriate for the diversity of what we’re tracking (meds, sleep, symptoms, physio). Never mind the fact that he (and I) would just prefer to get on with our lives. We haven’t found anything that tracks even one aspect of these well, and it’s vital we do all of them. It’s beyond frustrating.
The apps we have tried we universally end up deleting and end up going back to a clunky planner and spreadsheet managed by, wait for it, me. I’m waiting for the IT revolution that will make managing his chronic rare disease easier. Not holding my breath over here.
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Hi Isabel! The burden of patients (and their family members) who must track everything is real work, compared to the worried well who love to track health indicators because they can. As our own Toronto patient advocate Kathy Kastner once wondered on Twitter: “Self-tracking means you’re focused on your illness all the time. Is data the answer to everything?”
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I had to wear the Zoll Life Vest for 5 months. It was a PITA. Thankfully, I wore it in the fall and winter. It would have been unbearably hot in the summer. It was designed to fit a svelte person, not one shaped like a pear, so the bottom rolled up constantly. Putting all the connections in the right places was hard for this very brain-fogged patient.
Tomorrow is the 2 year anniversary of getting an ICD and therefore ditching the vest, and I still remember it like yesterday! I can’t fault the company’s contact people, they were great. But the vest was not a happy experience.
Holly
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Hi Holly – that’s a perfect example of clueless. “Oh, this size doesn’t fit the patient at all? Too bad, so sad, wear it anyway!” Reminds me of a story I heard at a cardiology conference about the very early coronary stents (none of which were small enough to implant into women’s arteries!) Duh….
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I am a T1 diabetic of 42 years. I wore an insulin pump for two years. I finally disconnected from it for good because my average blood sugar level went up instead of down.
This article describes a valid point. People wearing a device like an insulin pump become overly dependent on the data instead of learning to read their bodies. My average blood sugar is better by using insulin pens than with an attached device that provides endless data. All that data did not help me monitor my blood sugar better.
Focusing on data diverts a person’s attention away from taking stock of how they feel and reading their body.
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Dawn, that’s such a good example. Does making data digital make it better? No – it often just means much more of it to obsess over. Keep up the good work continuing to “read” your body.
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There was more than one size, and they readily exchanged the first one I was measured for when needed. It’s just that the bottom of the vest would roll up due to gastrointestinal edema and visceral fat. IOW, pear-shaped body 🙂 To me, it was a sign they designed the vest for men.
Holly
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Almost as if women don’t get ICDs implanted?
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