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What’s wrong with the following picture?

Two medical researchers at a major academic center collaborate to study disease X. They come up with the research question, design the project, obtain grants, and collect data. Their results are published in a scientific journal and presented at several medical conferences. Based on this first study, the researchers start another cycle of idea generation, data generation, and publication.

I presented this scenario to three Harvard medical students working with me in the ER. They all looked at me blankly. “I don’t get it,” one of them said. “Isn’t this the way research is done?”

That’s exactly the problem. This is “traditional” research, and traditional research leaves out one critical stakeholder: the patient. 

A few weeks ago, I had the honor of participating as a member of PCORI’s inaugural advisory panel on patient engagement. PCORI is the Patient-Centered Outcomes Research Institute, and is a new federal institute mandated to figure out how to meaningfully involve patients in research.

Some may argue with the necessity of such an institute. After all, isn’t research ultimately done to help patients? While grants and publications advance careers, few researchers go into such grueling fields to make money or gain fame. Isn’t research already serving the public good, which by definition is patient-centered?

But here’s another way to think about it. In “traditional” research, patients are subjects. Their sole purpose is to participate in research trials, and the extent of their decision-making is confined to whether to participate in the trial (let’s set aside, for now, the many throughout history who were subject to research against their will). Very rarely, if ever, do patients participate in the research design, data analysis, or result dissemination. Very rarely, if ever, do patients initiate the research and envision the research question itself.

Yet isn’t it the patient—the one with the disease—the most knowledgeable about what needs to be studied and how? No doubt, the researcher has irreplaceable expertise; but isn’t the patient also a vital partner in the process?

In this era of healthcare reform where the patient is finally recognized as a necessary stakeholder, the creation of PCORI is an attempt to shift the paradigm of how medical research is done. Rather than having patients as invisible, nameless subjects, PCORI requires them to be involved in the research design from the very beginning. Patients are expected to be equal partners in deciding what projects to fund and figuring out how to design studies with a patient-centered focus. They are expected to help figure out what’s important to study, and how to get out the results beyond the realms of scientific meetings and medical journals.

Much about this “new” concept of medical research is common sense. Most would agree that precious time and tax dollars should be devoted to what really matters to people. Yet, this paradigm shift is such a departure from traditional research that it is not without its doubters. Researchers not used to involving patients question whether they would be sophisticated enough to understand the research process. Patients, too, doubt whether they have the expertise required. Fueling this is mutual mistrust: will this new patient-centered approach derail existing research? Will patients end up being “used” for some nefarious ulterior motive?

As part of PCORI’s outreach efforts, it solicited applications for 4 advisory panels. Over 1,000 people applied—many of whom are representatives of patients and patient groups. Twenty-one of us were selected for the advisory panel on patient engagement, and met over two days in Washington D.C.

While many of us are optimistic and excited about the potential of PCORI, we also raised several questions, including:  

* How can researchers switch their mentality to become patient-centered such that they are not just simply checking a box to affirm that yes, patients are involved?

* How can PCORI itself ensure that it adheres to its goal of “research done differently” and go really tackle the concept of patient-centeredness?

* While it is admirable that PCORI has taken great strides to involve many patient advocacy groups, these groups represent only a small portion of patients. How can PCORI go beyond hearing the loudest voices—many of whom may also have their own motives—and really engage people?

* How will PCORI address issues neglected in traditional research that are vital to our healthcare, such as preventive medicine?

* How will PCORI really engage people around the country to come up with research questions and redirect priorities?

Recognizing that there is a fundamental problem with the traditional conduct of research is a critical first step to making change. PCORI has opened a door that’s been shut for far too long. It is now up to all of us—as physicians, researcher, and most of all, as patients—to ensure that medical research, and medical care, focuses on and originates from the patient.

It was my first shift as an intern, and I was terrified. I was assigned to the “Fast Track” area of the Mass General ER—a section designated for those with straightforward issues: lacerations, sprained ankles, etc. Overnight, though, I would be the only doctor in that area. I’d been away from clinical medicine for nearly three years, and was terrified of what that Saturday night would bring.

My first patient proved my ignorance. Mrs. R was a pleasant woman in her sixties who had gotten her left hand caught in the car door and was feeling pain in her third and fourth knuckles. I’d ordered x-rays of her hand, which showed a small fracture, and I was trying to figure out how to make a splint.

“Doctor, you might want to take another look at her hand,” her nurse, Kelly*, said.

I ran to the room. Even from the doorway, I could see that Mrs. R’s third and fourth knuckles had swollen to twice their size. The ring finger was turning a dark red, almost purplish, color.

This was an emergency! I couldn’t believe that I’d forgotten to take the rings off before the x-ray, and now they were compromising blood supply to the fingers.

But what do I about it now? Mrs. R was in obvious pain, but she was also crying that these were precious rings, given to her by her late husband.

I grabbed an ice bucket and some water-soluble jelly. Kelly frowned. “How about doing a digital block first?”

Numbing the finger…. that sounded like a great idea. But alas, digital block, jelly, and ice did not do the trick. “Maybe it’s time we get the ring cutter,” I said

“How about trying the string technique first—have you used that?” Kelly suggested. No…. but she had, and we succeeded in getting the rings off, without needing to damage them, or our patient.

The rest of the night was a blur. I remember my hesitation at ordering any medication stronger than Tylenol, and even Tylenol itself (“for God’s sakes; mothers give it to their babies!”.) I remember my first car accident victim, M, an intoxicated young man who had been struck while walking across the street. He looked fine to me, but his nurse, Ann, didn't think so. He was sweating and looked confused, not drunk. “Let’s move him to another area,” Ann said. She was right—he turned out to have a bleed in his brain and a large femur fracture. Her clinical acumen saved our patient.

Thankfully, I have matured as a clinician since that terrifying first day, though the training process was not without its bumps and bruises. I and my fellow trainees frequently credit the attending physicians and senior residents from whom we have learned so much. This praise is deserved, but I also want to acknowledge another group of people who have instrumental in teaching and guiding us: the nurses.

Over the last four years, I have had the honor and privilege of working with and learning from the terrific nurses at Brigham & Women’s and Mass General Hospitals. Time and time again, these nurses have saved me from making mistakes, big and small. They have taught me clinical judgment and clinical skills. They have demonstrated true patient-centered care, and shown me what it means to really listen. They have inspired me to always be vigilant and always care.

In my second year of residency, my mother passed away from metastatic cancer. Before she died, she told me that she wanted to make sure I thank her nurses, because it was they who she thought really cared for her.

It was they, too, who cared for my family and for me. After we decided to withdraw her life support, I was wracked with guilt. It was what my mother had wanted, but kind of daughter was I to end my own mother’s life?

All the doctors had left. Her nurse, Andy, came to find me at my mother’s bedside. He told me about how he had to make a similar decision to allow his terminally ill wife to die. “It’s what she would have wanted,” Andy said. “You are carrying out her last wish, to die peacefully.” I will never forget his words and his kindness.

As I near the end of my training at last, I am reminded of the Hippocrates saying that the goal of medicine is “to cure sometimes, to relieve often, to comfort always.” This, too, I learn through daily example from the amazing nurses I work with.

Thank you.

* Names have been changed, though I very much remember—and acknowledge—the actual people involved.

On Monday, I had the privilege of serving as the keynote speaker for an excellent conference in Boston. Empowering Healthcare Consumers: a Community Conversation brought together an impressive array of people to discuss how to improve healthcare through empowerment. In attendance were over 150 community leaders, clinicians, hospital administrators, insurers, advocacy group leaders, and patients.

Patients—or I mean healthcare consumers? The conference organizers specifically requested that I use the terminology of “healthcare consumer” rather than “patient” in my presentation. Several of the speakers before me made the point eloquently as to why: “patient” has the connotation of passivity, and people need to be active to take charge of their health. We need to be savvy consumers and do our own research into the cost and quality of healthcare, much the same way we would if we were shopping for a new car.

The new language made me uneasy. Don’t get me wrong; I am all for people being empowered in their healthcare (I write a blog and published a book on this), and for transparency and availability of information to make informed choices. However, I also believe that healthcare is a human right. A patient deserves healthcare as a right. But does a consumer?

Those of us in favor of universal access to care argue that healthcare is not a commodity like cars and TVs. Using the language of people being consumers could undermine this fundamental tenet. If you are shopping for healthcare in the same way you shop for your car or TV, this implies that you buy what you can. (Can’t afford a new Lexus? Buy a used Toyota. Maybe wait a year.) This doesn’t—and shouldn’t—work for healthcare. (Need heart surgery? Choosing the “discount” surgeon, or waiting a year, don’t sound like good choices.) Those who can’t afford healthcare are priced out of it, and healthcare is no longer a public good, like public education and clean water.

I also worry about effects of rebranding on the physician-patient relationship. What happens when the doctor becomes the hired consultant of the savvy shopper patient? Perhaps the doctor will be more responsive to consumer demands—but perhaps this doctor will also feel more obligated to give the consumer exactly what he wants, including unnecessary tests and harmful procedures. And will these physicians still retain their sense of social responsibility, when healthcare is reduced from societal obligation to personal choice?

An extreme version of patient-as-consumer can be found in China, where people routinely pay their doctors under the table as promise to receive better care, and patients—even those dying of stroke and heart attack—are turned away from hospitals if they cannot pay upfront for their treatments. The physician-patient relationship has broken down so much that doctors have been murdered by angry patient families.

In such a system where it’s every man for himself, it’s hard to convince people that healthcare is something we all have to safeguard. We already live in a society where many believe that more is better—at least when it comes to ourselves. When making healthcare decisions, few take into account the cost to society. Yet, healthcare is not a limitless commodity. There are efforts underway to think of the escalating cost of healthcare as we do global warming; these efforts will not work if we adopt the language of consumerism.

So what is to be done? Here’s a suggestion. Instead of throwing out the word “patient”, change what it means. Encourage people to become the educated, empowered patient, even, dare I say, the pushy patient. This is the patient who will make individualized choices about her health as an active and equal partner with her doctor. This is the patient who will ensure the best possible care for herself and, in so doing, catalyze reform of our healthcare system to one that values informed decision-making and reaffirms health as a basic right.