Beyond Empowerment: Patients, Paradigms, and Social Movements

Carr: Beyond being more open-minded, how can physicians prepare for the new truth? What does the paradigm shift mean for them?

deBronkart: For some physicians, this shift does not just upset their relationship with patients—it challenges their view of what it means to be a doctor, sometimes even their sense of self-worth. It’s difficult to become a physician, so we tend to assume there is little that people without that license can possibly offer. A doctor commented to me, “I’ve always been the one people come to for things they don’t know. If they know things I’ve never heard of, what good am I?”

But you see, I could read all the books in the world or have IBM Watson® in my pocket, and it wouldn’t make me a doctor. Think of all the things a good doctor provides: years of clinical experience, immense additional training, knowledge of treatment options. There is zero chance I’ll stop going to doctors; I value and need them! I just want them to welcome me as a willing, thinking partner who has a lot at stake in my health. The new paradigm holds that it’s not an insult if a less trained person has seen something that the professional has not.

Carr: Which brings us back to the role of e-patients. You’ve been asking clinicians to “let patients help” for years. How’s that going?

deBronkart: We’re well beyond the initial “What??” reaction and now into the stages of people who say, “Okay, how?”—or, predictably, some who say, “Are you kidding me??” Those who ask, “Okay, how?” are winning, because there’s both overwhelming evidence that medicine as currently practiced is fraught with errors—because it’s complex!—and overwhelming evidence that informed, activated patients can make real contributions.

I’m going to stick my neck out and assert that we have enough evidence today to say that healthcare providers who deny patients an active role are just as outmoded as the clinicians who ignored Semmelweis. In Kuhn’s terms, the old paradigm says a contributing patient is an anomaly—a violation of expectation. But that is today’s reality. And just as every Mars wobble added to the evidence that the paradigm had to change, so does every story of a patient who improves outcomes.

Still, actisvists gain little by insulting well-trained people. It’s important to speak science to science. Consider again the fate of Semmelweis, who “denounced his critics as irresponsible murderers or ignoramuses” (“Ignaz Semmelweis,” 2016). That did not go well. I prefer to use scientific thinking to transform science: Point to the evidence and urge trained minds to draw new conclusions.

Carr: Speaking of science, you have talked recently about creating a new science of patient engagement. Is that the evidence you mean?

deBronkart: Yes. As visiting professor at Mayo Clinic last year, I proposed we start a new scientific endeavor to model, measure, analyze, design, test, and optimize how patients and families can help medicine achieve its potential. Let’s collect a big library of verifiable stories where patients and families improved things, or could have but were blocked, and design policies and practices to make the most of our new understanding.

Carr: Given the large volume of medical information available, what’s your advice for patients just beginning to get activated, speak up, and do their own research?

deBronkart: Patients, as well as professionals, face a number of challenges with information: the sheer volume, the reliability of the information itself, and, especially in the peer-reviewed literature, gaining access to published studies.

It’s always been challenging for professionals in healthcare to incorporate new learnings into daily practice. When I was dying from kidney cancer and doing research about treatments, members of ACOR (www.acor.org) said it was okay to read five-year survival data if I wanted to, but they added, “Just remember, it’s seven years out of date compared with what the best hospitals do today.” Why? Because it takes at least that long for researchers to try something new, collect five-year survival data, and get it published. Meanwhile, leading providers aren’t standing still; they keep improving beyond the literature.

It’s ironic that e-patient communities know this, yet so many trained clinicians deny it, saying, “Where’s the literature on that?” Not all reality has been discovered yet; if it had been, we wouldn’t need any more research! The value of new knowledge—beyond the literature—gets vivid and urgent when a loved one is dying.

E-patients also know that no one should assume the literature is right. In recent years, the editors of three major journals have said that there’s trouble with the reliability of our information:

• In 2009, Richard Smith (BMJ) said, “Most of what appears in the literature is scientifically weak.”
• In 2012, Marcia Angell (NEJM) said, “It is no longer possible to trust most of what’s in the literature.”
• In 2015, Lancet editor Richard Horton said, “The case against science is straightforward: Much of the scientific literature, perhaps half, may simply be untrue.”

So when people say, “There’s garbage on the Internet,” we need to balance that with awareness that the same is true in the literature. It’s challenging, but true.

It took us a generation to teach doctors to move away from “eminence-based” medicine to evidence-based medicine. If perhaps half of the evidence is wrong, then what? IBM Watson won Jeopardy!®, but how would you program it differently if half of everything it finds is wrong? Yikes! Yet that’s the world in which patients, families, and clinicians try to deliver and receive care.

Carr: Given those challenges, how can patients hope to be effective in their search for good information?

deBronkart: Great question, and I’ll sharpen it: Given what those editors said, how can anyone hope to be effective?

It seems clear that the only demonstrably valid approach is for all of us to take what evidence we have and move forward watchfully, checking constantly: “Is this working for this patient?” For one thing, let’s accept that it’s reasonable for patients to search for information and to voice their preferences about treatment.

The World Bank’s definition of empowerment is helpful: “Increasing the capacity of individuals and groups to make choices and to convert those choices into effective actions and outcomes” (n.d.). They’ve used this in country after country to develop whole nations and economies, so it certainly ought to be useful for upgrading patients’ role in their own health!

Carr: What about patients who may not want to be empowered and engaged? What do you say to people who just want their physicians to tell them what to do to get better?

deBronkart: Absolutely—people are different, and to achieve patient-centered care, we need to pay attention to what each individual values. For some people, that’s “take care of me.” For others, it’s “please answer my questions.” I encourage people to think for themselves; the last thing I’d do is say, “Don’t think that way; think my way.”

I expect the shift to activated, autonomous patients will, like other social changes, take generations to become the norm. Again, I see parallels with feminism. At first, many (even most) women had no interest in changing. As consciousness was raised and people saw women being insulted or held back, the new view made more sense, and impatience with suppression grew. The same is happening in patient empowerment, and it gets aggravated when, for example, a child dies because providers invalidated and ignored a parent who said, “Listen to me! Something’s not right!”

That brings us back to the nature of scientific validity. In his book, The Laws of Medicine, Pulitzer-winning author Sid Mukherjee says, “Normals give us rules. Outliers give us laws” (2015, p. 38). Our observed rules explain what usually happens, but it’s the exceptions—the outliers—that often reveal the underlying truth, whether we like it or not. He, too, cites misbehaving Mars, the outlier that led to paradigm change: the Copernican revolution.

It’s no coincidence that at least as far back as 2008, people have been talking about healthcare’s Copernican shift, from the provider at the center with consumers orbiting (“The doctor will see you now”) to the consumer/patient at the center (Microsoft, n.d.). It’s no insult to the physician, but it means everything is rearranging. The title of the latest book by famed cardiologist Eric Topol (2015) says it all: The Patient Will See You Now.

The great opportunity before us is to look at the evidence and understand what has changed, what that change makes possible, and what doors that possibility opens to doors beyond.

A lot is at stake. We know what happens to people who try to hold back the tide: They’re miserable until they’re swept away. It’s a shame if that happens to highly trained and experienced people. Let’s rethink this, understand how things have evolved, and reconsider our paradigm of the patient. Most of all, let’s get scientific about it: Let’s create a new science of how patient engagement works, how to measure it, and how to make the most of the arriving future.

References

Angell, M. (2009, January 15). Drug companies & doctors: A story of corruption. The New York Review of Books.

deBronkart, R. D. (2010). Laugh, sing, and eat like a pig: How an empowered patient beat stage IV cancer (and what healthcare can learn from it). Media, PA: Changing Outlook Press.

deBronkart, R. D. (2011, April). Meet e-Patient Dave. Presentation at TEDxMaastricht. Maastricht, Netherlands. Retrieved from http://on.ted.com/ePatientDave

deBronkart, R. D. (2013). Let patients help! CreateSpace Independent Publishing Platform.

Ferguson, T. (1980). Medical self-care: Access to health tools. Philippines: Summit Books.

Ferguson, T., & The e-Patient Scholars Working Group. (2007). e-Patients: How they can help us heal healthcare. Boston, MA: Society for Participatory Medicine. Retrieved from http://e-patients.net/e-Patient_White_Paper_2015.pdf

Horton, R. (2015, April 11). Offline: What is medicine’s 5 sigma? The Lancet, 385(9976), 1380. Retrieved from http://dx.doi.org/10.1016/S0140-6736(15)60696-1

Ignaz Semmelweis. (2016, February 18). In Wikipedia, the Free Encyclopedia. Retrieved from https://en.wikipedia.org/w/index.php?title=Ignaz_Semmelweis&oldid=705565036

Kuhn, T. S. (1962). The structure of scientific revolutions. Chicago, IL: University of Chicago Press.

Microsoft. (n.d.). Cleveland Clinic home monitoring pilot. Retrieved from https://www.cylab.cmu.edu/files/pdfs/news/mobilehealth_microsoft.pdf

Mukherjee, S. (2015). The laws of medicine: Field notes from an uncertain science. New York, NY: Simon & Schuster.

Rheingold, H. (1994). The millennium whole earth catalog: Access to tools & ideas for the twenty-first century. New York, NY: HarperCollins.

Smith, R. W. (2009, October 21). In search of an optimal peer review system. Journal of Participatory Medicine, 1(1), e13. Retrieved from http://www.jopm.org/opinion/2009/10/21/in-search-of-an-optimal-peer-review-system/

Topol, E. (2015). The patient will see you now. New York, NY: Basic Books.

Wangsness, L. (2009, April 13). Electronic health records raise doubt.
The Boston Globe, p. A1.

The World Bank. (n.d.). What is empowerment? Retrieved from http://go.worldbank.org/U72REYP4F0