The swell of activity encouraging a more consumer-based approach to health care over the past decade has deep ramifications. This shift is due in part to the proliferation of technology that facilitates increased patient access to information via the Internet, knowledge creation, and peer-to-peer sharing. These developments have signaled a seismic change in health care delivery, ostensibly shifting the locus of care from clinicians to patients. The phrase “patient empowerment” is often used to emphasize the value of having patients assert greater control over their health and health care.
Why has there not been a concomitant shift in norms of patient care? We hypothesize that although the conversation has shifted, the paternalism in health care has not. Without deeply examining this disconnect, health care providers cannot meaningfully create change and deliver the patient-centric care we (at least on the surface) espouse.
To begin, consider the words “patient” and “empower.” To quote Inigo Montoya in The Princess Bride, “You keep using that word. I do not think it means what you think it means.” While patient empowerment is not truly inconceivable, it is a concept that requires a shift in power to reach its full potential. This shift is embedded in the phrase itself, and knowing that words have power, let’s examine the language that must be used to usher this change.
“Patient” comes from the Latin patiens or patior, which means to suffer or to bear. It suggests someone who passively bears anything done to him or her. The word does not represent the modern patient, who is often characterized as active, engaged, and informed participant. Debate over use of this term is at least two decades old. Although clinicians recognize the limitations of “patient,” there has been resistance to replacing it without a perfect alternative. Words like “customer,” “client,” or “consumer” denote that health care is voluntary or transactional, like buying groceries or a new smartphone, but each falls short in some way, as do terms like “health care recipient” and “participant.” Julia Neuberger’s recommendation of simply using “user” or “health care user” comes close to addressing most of the semantic issues with the word “patient,” but those are unglamorous and still a bit transactional.
The second word, “empower,” implies that a health system or individual providers/clinicians should be giving patients the authority to take care of themselves. A tacit assumption, and inherent flaw, is that this authority is solely ours to give, or that patients need us to give it to them. There is an element, of course, of imbalance in clinical expertise, and that imbalance has resulted in the creation of this hierarchical relationship. The ramification, however, of bolstering this hierarchy is that we never truly consider our patients an equal (or, even more important) player in an equation that involves both clinical and personal values-based input.
As a result, the health care system continues to focus on engaging patients in behaviors that are deemed desirable from a mainly biomedical perspective: taking medications as prescribed, or maintaining a BMI below 25, for example. These desirable behaviors are considered universal, and it is assumed that all patients should engage in them to be optimally healthy. No space is left for individual patient goals, needs, desires, abilities, backgrounds, and other factors that make humans, and humanity, so rich and diverse.
So, if we are not truly empowering patients, what exactly should we be striving for?
We would argue that at the most basic level, what providers should do for patients, or health care users (to adopt Neuberger’s term), is satisfy their needs. Although we arguably do a great job today of meeting users’ clinical needs by providing accurate diagnoses and treatment options, we significantly underperform on meeting other social determinants of health, such as education about their conditions, treatment options, social support, or considerations for individual social and cultural norms, abilities, preferences, fears, or attitudes.
Technology That Encourages Empowerment
In 2014, a team at the Partners Connected Health tried to design a digital solution for users with atrial fibrillation (AF). The standard treatment for AF is a prescription of anticoagulants. Warfarin, the most preferred anticoagulant by clinicians, is fairly inconvenient for users. Clinicians like that its effects can be easily reversed, while users detest the weekly blood tests and visits to the Anticoagulation Management Service (AMS) clinic, as well as the restrictions to their diet and lifestyle. The weekly clinic visits also help clinicians ensure that users are compliant with their prescribed medications.
During our formative research, we found that most users did not understand why they took anticoagulants, and most of them would stop the medication if their heart was beating regularly. Others would stop it within a few months, assuming the medication was no longer necessary. In one way or another, users identified personally meaningful and relevant reasons to stop their treatment and eliminate what felt like an additional burden on their lifestyle.
Novel oral anticoagulants (NOACs), available since 2003, do away with the need for weekly tests or dietary restrictions. But clinicians are slow to adopt NOACs because their effects are more difficult to reverse. In our research, however, we found that most users were never even offered this choice. Out of the 20 users on warfarin we interviewed, only five had even heard of NOACs, despite high-reach television campaigns by the market leader, Xarelto.
Our goal was to help our users stay out of the hospital. We initially sought to empower them to adhere to their warfarin prescription. We designed reminders, alerts, educational videos, etc., to holistically address barriers to adherence. We thought that if we could educate users on what is best for treating their condition, then there’s no reason for them to skip their medication.
We found very quickly, however, that users were simply not convinced they needed the treatment, despite watching our slick educational videos. They also thought that on balance, the lost benefit associated with missing a few doses was lower than the pain of drastically altering their lifestyle.
Our team regrouped and dug deeper into what was going on. We focused on recognizing the user perspective prior to treatment initiation. We realized that instead of empowering users for a preset goal, we should let them determine a role for themselves in this program.
With input from our clinical staff and users, we designed a patient-facing decision tool, AFib Connect, to help users pick the right treatment for their specific need. The tool starts with a lifestyle preferences questionnaire rather than asking only about clinical factors. It asks users about what trade-offs they are willing to make, and what risks they are willing to expose themselves to. For someone with a high risk of cuts and injuries, the tool explains the utility of warfarin and the trade-offs for giving it up. For those who value a freer lifestyle, the decision tool explains how easy it is to take NOACs. The tool also helps users uncover their own blind spots. Are they often forgetful? Are they organized? Are they worried about what might trigger an AF episode?
The tool was designed to help users initiate a discussion with their clinicians, deciding together on the most suitable treatment. In addition, the tool collects data actively and passively from users (symptoms, physical activity, etc.) and uses the information about users’ blind spots to help them in those areas of weakness, such as reminders for those who are forgetful, or a trigger tracker for those looking to explore their disease further.
An initial pilot of 15 users showed that we were onto something. Not only did the app score highly for usability and usefulness, but the decision support tool and personalized support also made the app feel like a friend.
“I feel like I am saying goodbye to a dear friend.” – 64-year-old user after completing the study
“It is truly my AFib buddy — it helped me pick my medication and it reminds me when to take it every day.” – 59-year-old user
How Providers Can Share Power
Giving power to users means that health care providers reduce our own power in the relationship. Are we ready for that? If so, health care organizations and individual providers should consider using words and language more appropriate for our role in the users’ care, such as coach, guide, counselor, or advocate. These words uphold the specialized nature of our expertise, but also equalize the relationship somewhat. We could also consider adopting a more passive persona, to correct the pendulum that is currently swung too much on the other end.
No matter how the language of care is changed, we must be aware of the ways in which the culture of health care itself needs to shift, to accommodate today’s patient-user, who takes charge of his or her own care.
In the words of Eric Topol:
“When individuals become fully respected by their doctors and on an equal footing; when the individual now unabashedly asks the right questions, drives the process, and makes the choices . . . we’re not just talking medical empowerment. We’re talking medical emancipation.”