Lately there has been considerable discussion about how digital health can “empower” patients. Although it seems fine if a patient wants to use that term, I am concerned when non-patient technophiles speak of empowering patients. I’ve even noticed it in my own writing, which prompted me to think about the larger context of what we mean by patient “empowerment.” This essay is about whether empower is the right word for digital health technophiles to use, how technoskeptics might perceive that word, and a possible alternative to use when speaking about the impact of digital health on patients’ lives.
As a physician who directs a digital health research lab, teaches a graduate course on health information technology, and invented an FDA-approved wearable biosensor, I am a digital health enthusiast – a “technophile” who loves wearables, mobile health apps, patient provider portals, and all things electronic. I believe that digital health, broadly defined, has potential to improve healthcare delivery, as I’ve written about here and here. I am also a patient, and hope as much as anyone that digital health can allow us all to live longer, better, and healthier.
But with that background, I’ve noticed a growing chorus of Technophiles (with a capital “T”) making sweeping statements about how digital health is “transforming” medicine forever, “democratizing” healthcare for the better, and, most notably, “empowering” patients like nothing ever before.
Here is a simple exercise that quickly reveals The Technophiliac’s worldview: Perform a Google search combining the words “empower”, “patient”, “digital” and “health”, and see what you get. I got 2,060,000 results (in 0.39 seconds, no less). Here are the first 5 technophiliac statements from this Google search, in order of appearance:
- Title of Report from The Commonwealth Fund: “A Vision for Using Digital Health Technologies to Empower Consumers and Transform the U.S. Health Care System.” (Note the buzzword trifecta: “vision,” “empower” and “transform” all shoehorned into one sentence.)
- From America’s Essential Hospitals: “So the digital health field is working on ways to give patients more control over their experience by using technology… Wearable devices and mobile apps help patients take more control of their own health… Med school dropouts and graduates are creating these tools to empower patients.”
- From Elsevier review of Eric Topol’s Book, The Patient Will See you Now: “The book is as much about empowering the patient as it is about the technologies that will enable that empowerment.”
- From Healthcare IT News: “Patients now have tools readily available in their home and on their smartphones to self-test, self-diagnosis and self-treat. This ability to self-manage one’s health, whether through websites, mobile apps, or in-home devices, is empowering patients to choose how, when and with whom they receive care.”
- From mHealth News: “Is technology the answer to creating healthier patients? If empowering patients makes them more engaged and engaged patients tend to be healthier, the real question is how do doctors empower their patients?
These are just 5 comments from my quick search. Evidently there are 2,059,995 left to review. But this sample captures The Technophiliac worldview: Digital health empowers patients, drives engagement, improves health, enables self-diagnosis, promotes self-treatment, and allows patients to wrestle control over their health in ways never before imaginable.
As a technophile (lower case “t”), I’m concerned that these strong claims provide fodder to the growing community of Technoskeptics, such as Ezekiel Emanuel, who delivered a blistering keynote address at the 2015 Partners Connected Health Symposium entitled: “Techo-Skeptic: Being Realistic About How Technology Will Improve Healthcare.”
In his talk, Emanuel outlines principles of the Technoskeptical worldview. First, he emphasizes that we don’t need all the digital data; we’re drowning in data, and as a result losing any signal in the noise. Ezekiel pokes fun at the archetypal Technophiliac, Eric Topol, who, he characterizes in his talk, “struts on a stage, holding up his iPhone, and says ‘look at this EKG on this iPhone! It’s great! It’s cool! It’s a great Valentines gift.’” Ezekiel retorts: “But how often do you actually have to see your EKG to know that your heart is still beating?” He provides other examples where people are fitted with “cool” sensors, only to stop using them for lack of compelling insights, or because they just grew tired of the insights. In fact, Ezekiel even says, “wearables are totally irrelevant for what we need to do in healthcare. I think you can forget wearables for the masses.”
Those of us who are technophiles need to keep folks like Emanuel in mind as we describe the potential of digital health. Emanuel makes important points that we need to consider carefully. Sweeping statements about digital health will only strengthen the resolve of the Technoskeptic, who reads a phrase like “empowering patients” and cringes.
As I think about it now, the notion of digital health empowerment is potentially insulting to patients, and at best paternalistic, because it implies that a power asymmetry existed in the first place. The Technoskeptic may wonder how one can summarily transfer “power” to patients just by offering an app or wearable device, and questions whether patients were crying out for empowerment in the first place.
I can just imagine the Technoskeptic’s response: “Who are you to proclaim that you can empower patients with apps and wearables? You’re not that powerful. Nobody asked for your power transfer. You just decreed it on your own accord.”
I’ve looked back at my own writing and found instances where I said that digital health could empower patients. Yet, as a doctor, I’ve never once heard a patient ask to be “empowered.”
Can you imagine? “Doctor, I came here today because I really just need some empowerment. Can you please instill me with your power?”
That’s a preposterous scenario, which is why it never happens. Patients want relief of bothersome symptoms that are impacting their lives. They want discomfort lifted, pain reduced, anxiety eased, and quality of life improved. They want to live longer, better, and healthier. But I’m not sure they want our empowerment.
I would offer a simple and less Orwellian alternative: At best, digital health is one of many approaches to enable patients in reaching their healthcare goals. That’s about it. We are enabling patients through a shared decision-making partnership.
I’m going to start using the word “enable” whenever my brain wants to say “empower.” It will be part of my ongoing reform effort, as a technophile, to soften proclamations about the reach of digital health while avoiding conditioned buzzwords with vacant or unintended meaning. Moreover, I think it’s more accurate, more humble, and strengthens – not weakens – our mission as digital health practitioners.
– Commentary by Dr. Brennan Spiegel