The engaged patient is an anomaly. Let’s fix the paradigm.

For years this blog has been discussing the value and legitimacy of engaging patients as a path to better care. Yet we don’t see a stampede of people—providers or patients—rushing to do it. Why not?

I’ve been advocating for participatory medicine for years, more than 500 events in 15 countries. Through that experience, I’ve observed a pattern: Medicine around the world believes in a paradigm of the patient as someone who receives care from knowledgeable people – people with knowledge the patient doesn’t have. And in that paradigm, competent, engaged patients are anomalies; they just don’t fit in the established wisdom.

Trying to understand this, in recent years I have read dozens of books about the history of medicine and science in general. The most profound learning came from one book, which doesn’t just declare the problem, it identifies that a field must change when too many anomalies pile up. But along the way, there is misery and resistance.

Paradigms and Anomalies

In his landmark 1962 book, The Structure of Scientific Revolutions, Thomas Kuhn establishes for the first time that the progression of ideas in a scientific field amounts to more than piling-on new knowledge. Regardless of evidence, the field depends on agreement among practitioners in the field about how things work. He calls those agreements “paradigms,” and the book describes how a field actually advances: it’s sociological (as all agreements are). Kuhn offers profuse examples from the history of physics, chemistry, astronomy, electricity, and more.

Anomalies—things we observe that just don’t fit with the current paradigm—are an important part of this process because they determine when a field is ultimately forced to evolve. When anomalies accumulate, there is misery in the field; anomalies mean our model is wrong, and that’s hard for people to wrap their heads around—almost literally. It’s so hard, and the resistance can be so strong, that Nobel Prize-winning physicist Max Planck put it this way, in his Scientific Autobiography:

A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die, and a new generation grows up that is familiar with it. (pp. 33–34)

Sixty years earlier, Charles Darwin said it, too:

I by no means expect to convince experienced naturalists whose minds are stocked with a multitude of facts all viewed, during a long course of years, from a point of view directly opposite to mine. … [B]ut I look with confidence to the future,—to young and rising naturalists, who will be able to view both sides of the question with impartiality (pp. 295–296).

The thesis of this post is that medicine has an implied paradigm—a set of assumptions shared by many, both clinicians and patients, not to mention authors, researchers and policy people—about what patients are capable of. We can see from many examples, the old paradigm is that patients aren’t really capable of contributing anything substantial. So, for instance, why should we empower them with full access to their records and “waste time” involving them in complex medical decisions?

Engaged patients put the paradigm of the passive patient further into crisis, which calls for a formal reassessment of the patient’s role.

I assert that every story about an engaged, empowered patient who changes an outcome is an anomaly in Kuhn’s model. And I assert that we now have so many of these anomalies that the paradigm is in the stage Kuhn calls “crisis.” Wikipedia’s description is perfect: “If the paradigm proves chronically unable to account for anomalies, the community enters a crisis period.”

Each anecdote that shows the value of engaged patients puts the paradigm of the passive patient further into crisis and calls for medicine to do a formal reassessment of the patient’s role. Not to do so is simply unscientific.

How Paradigms and Anomalies Affect Practice

These principles aren’t academic abstractions; they matter in practice. Here’s how it plays out in three commonly discussed areas.

Patient access to the electronic medical record

• Conventional wisdom (consistent with the paradigm): “Patients don’t understand this stuff. They’ll worry and besiege us with questions. Most don’t even want to know.”
• Anomalous reality: The OpenNotes program has shown, in dozens of papers, that patients overwhelmingly do want to know, the feared problems rarely happen, and many good things happen instead. The obsolete paradigm has been holding back improvement.
• Impact on policy and practice: Five years after the seminal OpenNotes results, still fewer than 4% of Americans (12 million) have access to open notes, and hordes of patients report resistance or refusal to their requests for medical records.
• Paradigm shift: Update our paradigm of the patient until the anomalous becomes what we expect: Patients do want access to their records; they’re not passive. This leads naturally to inviting patients to participate and adapting our methods to make the most of the new potential.

Patient participation in bedside shift change:

• Conventional wisdom (consistent with the paradigm): “We know what we need to do. Patients won’t understand and might get worried. The right thing to do is shield them from the truth.”
• Anomalous reality: Evidence shows that including patients in shift handoffs and rounding can catch many disconnects; it’s not uncommon for outright errors to be prevented.
• Impact on policy and practice: Bedside shift change is practiced in few hospitals.
• Paradigm shift: Update our paradigm of the patient until the anomalous becomes what we’d expect: patients and family members can provide valuable information, which should not just be welcomed, but actively sought and encouraged.

“Stay off the internet”

• Conventional wisdom (consistent with the paradigm): “Clinicians know what needs to be known; patients don’t.”
• Anomalous reality: Numerous cases exist where engaged patients brought valid, useful information to the attention of clinicians, and clinicians welcomed it. Some have helped save their own lives.
• Impact on policy and practice: Many doctors post cartoons discouraging patients from thinking and seeking information. The Belgian government spends taxpayer money on Google ads that link to one expensive ad-agency video or another saying, “Don’t Google it. Consult a professional,” as if that were an “either-or” choice. (I, for one, do both: I learn what I can and discuss with my professional. Don’t you?) A large Israeli HMO runs a TV commercial calling Googlers “search victims,” implying that Googling is a disease!
• Paradigm shift: Update our paradigm of the patient until the anomalous becomes what we’d expect: Googling is a sign of an engaged patient! If patients aren’t good at it yet, coach them. (Iora Health’s “health coaches” are a solid example of the new-paradigm view.)

“Best Care” Changes When the Cared-for Matures

At this point, my granddaughter needed to be taken care of by people who knew things she didn’t.

Just as Darwin suggested, this can be difficult to explain to someone with deep experience and success under the old paradigm. I’ve found in my speeches that it’s useful to cite the parallels with the progress from paternal care to emancipation.

It’s important to understand that paternalism—paternal caring—starts with the best of intentions: as Wikipedia says, “Paternalism is behavior … that limits [someone’s] liberty or autonomy for what is presumed to be [their] own good.”

Everyone talks about parental care as if it were an arrogant disrespectful thing. But my perspective shifted in an instant when I saw a beatific photo [left] of my own granddaughter at age three months. I realized:

• She’s in a car seat, which she can’t comprehend.
• She’s in the back seat, which she can’t comprehend.
• The seat is facing backward, which she can’t comprehend.

She needs to be taken care of by people who know things she doesn’t. That’s good, justified paternal care, same as in “No, honey, don’t touch the stove! You’ll hurt yourself!” Paternal care is essential for the clueless, but not as the cared-for matures.

But my granddaughter has matured and needs less direct care now. The potential of the competent patient is maturing as well.

Sociologically and through knowledge acquired online, as well as through connections with other patients, many patients today have aspirations and knowledge that were not present a generation ago. To fail to recognize this is to hold back real progress.

It Starts With Understanding Empowerment

Once we accept the new paradigm of the patient—offering real potential to contribute—how do we get from here to there? One key is to realize mistakes in past thinking, another is to understand how both patients and providers can enable the shift.

I’ve found that it’s useful to understand what empowerment is. Here’s the definition I use:

Empowerment is increasing [someone’s] capacity to make choices, and to convert those choices into effective actions and outcomes.

It’s the definition the World Bank uses when it goes into a developing nation. (It also happens to perfectly match my granddaughter’s growth in capacity year by year, yes?) Go look again at the three examples above and consider: how might we increase the capacity of patients and families, to help achieve the best in medicine’s potential?

So, let’s start a revolution—a scientific revolution about the paradigm of the patient—by pointing out the old paradigm to everyone we meet when we see it rearing its head, pointing out anomalies (engaged patients in action), and pointing the way to the new paradigm: patients as contributing partners.