Self-Monitoring Health IT Falls Short of Providing the Information We Need

SELF-MONITORING HEALTH IT FALLS SHORT OF PROVIDING THE INFORMATION WE NEED

By Jessie Gruman

April 2, 2014

“Wearable technology is starting to disseminate to collect pulse rate, EKG, EEG, sleep, steps, calories burned and more…

And the potential for even more and closer monitoring with a greater level of detail exists, as patients start wearing these monitors and sending data to us and expecting us to do something about it. Taken to the extreme we will likely have patients embedding sensors within their bodies, and have tiny nanotechnology sensors floating in their bloodstream continuously monitoring every measurable aspect of their health.

But the question remains, what do we do with all of this data?”

So asks Dr. Fred Pelzman, associate professor of medicine at New York Presbyterian, in his blog post “How Much Data Is Too Much?” And he answers, noting that clinicians have no need for all this data…that unless teams of trained technical professionals monitor and look for unusual trends for a few worthy patients, gathering it is pretty much a waste of resources.

I agree – but from the perspective of a patient, not a clinician.

Yes, there are some data-fan, quantified-patient types out there. But most of us are not enamored of monitoring bits and bytes of our biophysical functioning. Fully one-third of us, for various reasons, can’t even be bothered to fill our prescriptions for medications we need. And when we manage to fill them, we turn out to be wildly inattentive to taking them as directed (assuming we even understand those directions).

What makes anyone think that lots of us are going to demand inconvenient and intrusive monitors to measure every flick of our physiology that will in turn flood doctors like Pelzman with useless information, especially when most of us really just want a quick resolution to our symptoms so that we can resume walking the dog, cooking dinner and watching Game of Thrones?

In fact, most of us are not demanding self-monitoring devices, nor are most clinicians prescribing them for their patients, for similar reasons. With a few noted exceptions, such devices produce too much – and much too general – data to be truly useful to guide either changes in our behavior or changes in our treatment. But other parties envision benefits and they are the ones driving the development of these technologies.

As George Packer pointed out in a New Yorker article on Silicon Valley, “The hottest tech start-ups are solving all the problems of being twenty years old, with cash on hand, because that’s who thinks them up.” This might account for the heavy emphasis on fitness and fine-turning cardiac function, as opposed to apps that simplify solving the problems that older people with multiple chronic conditions face on a daily basis.

I have no doubt that through successive approximation and the aging of the HIT workforce, eventually tools and apps will be developed to monitor critical health variables at critical points, which will in turn produce information that is clinically significant and useful as the basis of our care decisions and those of our clinicians.

While we are waiting, though, perhaps we can turn our attention toward more immediate concerns. Richard Barton, the successful entrepreneur behind the popular Expedia website/app and a number of other ventures, has it right when he says his work is guided by the question: “What piece of marketplace information do people crave and don’t have?”

I don’t crave the calorie count of nine Wheat Thins, but I sure as heck want to know how my doctor handles after-hours care when my kid has spiked a fever, has a rash and can’t stop vomiting.
I don’t need to know my average resting heart rate, but I really really want to know who to call so I can get some personalized advice when my new prescription medication is making me itch like crazy.
I don’t want to track what I eat or how many steps I take, but I would place a high premium on having a clinician on my health care team take the time to explain just what is most important for someone of my age and condition to eat and to do.
I don’t feel like tracking my moods or energy levels pre- and post-chemotherapy, but I am very curious about the signs that would show that a clinical intervention might improve one or both.

The allure of self-monitoring health technologies is great. And the potential of such technologies to boost the effectiveness of health care is high. Just not yet.

In the meantime, many of us crave the right information at the right time in order to care for ourselves and those we love: How and from whom do we get the care we need? What do we have to do to follow through on medical advice as best we can? Such information allows us to make informed choices. It is useful. It will improve our care. It will improve our outcomes.

Let’s not allow the future promises of self-monitoring technologies to obscure our immediate needs for help with fulfilling the basic and immediate promises of health care.

Original blog post by Jessie Gruman. Updated by the GW Cancer Institute June 2016.