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 conversations on zinc and copper sediment in the Fraser River estuary.

That kind of clueless.

Oh, sure, 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 media interviews, teaching classes in things like Crisis Communications or Reputation Management, or whipping up a communications plan. And as a Mayo Clinic-trained survivor of a widow maker heart attack, 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 to 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. So 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 of self-tracking – 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 and what daily life is actually like for Real Live Patients out there.

The first group includes those QS 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 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.

A good illustration of this difference is a recent overview in The Atlantic by Thomas Goetz called The Diabetic’s Paradox, in which he offers this caution to the vogue of self-tracking. People diagnosed with Type 2 diabetes, for example, have been tracking their blood sugar levels and diet for decades, he writes, 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?”

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 reader who contacted me last fall 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 wrote that she’d assumed there would 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 (no 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?

Harriet & Charlotte Childress (twin authors of the delightful Clueless At The Top: While the Rest Of Us Look Elsewhere for Life, Liberty and Happiness) may have a clue about why we tend to listen so unquestioningly to anything that Silicon Valley is preaching:

“We are programmed from birth to pay attention to the views of people at the top, and to trust them for guidance. However, their decisions are rarely based on information, compassion, understanding, truth, or the real perspectives and needs of the rest of us.

“And who is really benefiting from this situation? Even though they say they are acting in the best interests of others, they can be counted on to make decisions that benefit themselves.

“People at the top take challenges to their positions very seriously. They act quickly and forcefully to confront threats, especially frontal attacks. Even the smallest question can feel like a threatening attack.

“Trying to convince the clueless top to come around wastes valuable time and resources, and our anger and frustration decreases our effectiveness.”

(I’m going to now go and embroider “Why bother?” on a pillow to remind myself that even the smallest question from a dull-witted heart attack survivor like me may be viewed as a threatening attack).

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.  See also: An Open Letter to Mobile Health App Developers and Their Funders.

I’ve noticed further examples of this on many Linked In groups online.  I first discovered this awareness gap back when I too was clueless about who actually participates in Linked In group conversations about patient engagement and health care. As I naïvely described at the time:

“I noticed that the Linked In site has member groups discussing patient engagement. Hey! I consider myself an engaged patient – maybe I should drop in on one of these groups and see what other engaged patients are up to? Contemplating issues like doctor-patient communication, improved health outcomes and informed decision-making, likely.

“It was only then that I found this out: these groups don’t have patients in them.

“What they do seem to have: corporate suits talking to other suits (and more importantly, to potential clients) about their companies’ role in taking financial advantage of this whole engaged patient movement.”

Scratch most discussion groups on health tracking or patient engagement topics, and you’ll uncover a parade of lurking industry employees whose job it is to enthusiastically point out the specific features and benefits of their company’s superior sensors, apps, and other tech devices that clearly represent The Next Big Thing.  That’s what they get paid to do. They’ll even leave a handy link to their site for your convenience before they scurry on to leave even more comments in as many other online health care group discussions as possible.

And they’ll do this relentlessly, even when the group discussion is focused on a significant problem that Real Live Patients may be experiencing with self-tracking itself.

Their responses seem to suggest that there are in fact very few problems in life – especially in the future of health care – that cannot be easily fixed by just using their superior sensor/app/tech device, no matter what patients may be trying to tell them.

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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See also:

• ‘Healthy Privilege’ – when you just can’t imagine being sick
• 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
• Does knowing change behaving?
• When the elephant in the room has no smartphone
• Digital temptations: “Quantifying, tracking or gamifying everything”

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