Guest: Narrative Medicine & Inside Stories

I am delighted to host a guest blog by writer and narrative medicine specialist Annie Robinson, who describes her journey with storytelling.

On a warm June afternoon, clustered around picnic tables, cradled in the mountains of the Berkshires in western Massachusetts, eight medical students from around the world began telling one another their stories. They were among approximately 40 students invited to participate in a weeklong intensive program run by AMSA for medical students interested in integrative medicine called LEAPS. As a graduate student of Narrative Medicine at Columbia University, I was asked to help facilitate the program.

Over iced tea and dark chocolate, they spoke of heartbreak and grief and divorce, of exam-stress and isolation and fear. They also shared brilliant visions of innovative approaches to medical care, and their aspirations to foster intimate relationships with their fellow medical students, their families and friends, and their patients. I listened with rapt attention as they described how, from personal struggles, conviction and vision were born for their careers as caregivers. I shivered, on that muggy summer day, knowing I was in the presence of my tribe. 

I was raised to revere the power of storytelling, which has been a critical component in how I have navigated my way through the world. It proved particularly useful when I entered the healthcare system in my early adolescence. I have spent over half of my life now as a patient, grappling with illnesses and issues of embodiment. In large part, it has been by speaking my struggles aloud that I have been able to heal. Telling my stories has allowed me to harness the power of the dark times to create connections and attain insight. 

As I sat there at LEAPS, witnessing medical students experiencing what I myself had experienced time and again–that relationships and wisdom come from baring one’s soul – I began to envision a way to enable more students to engage in this powerful narrative process. The seeds for my oral narratives podcast project Inside Stories: Medical Student Experiences were planted. I wanted to hear more student stories about the path to medicine, about struggles and triumphs, roadblocks and dreams. Through sharing over the course of that week, the students gained clarity and catharsis, and many remain in touch to this day. 

Inside Stories emerged from those conversations with LEAPS students. The idea was to develop a podcast platform that would enable medical students anywhere to both voice and listen to stories about medical student experience. Inside Stories’ mission is “to provide a means of personal healing, self-realization and empowerment through the sharing and receiving of personal stories, as well as to cultivate community among students in the often isolating medical school environment.” The interview process involves recording stories from current medical students, remotely or in-person. Recruitment has been done via word-of-mouth, social media platforms, and at medical humanities conferences. Student participants comprise a diverse demographic of men and women from all four years of medical school, of various races and nationalities, interested in medical fields ranging from OB/GYN to pediatrics to gastroenterology and many more. 

The topics addressed are vast. Hannah spoke about the challenges of navigating in medical school while being a mother. Petra reflected on how her spiritual path informs the challenges being a medical student. Katie discussed the encouragement she gained from finding her mentor. Leah shared how writing poetry aided her personal healing. Samar described how self-care practices helped her get through school. Angie talked about how her Syrian heritage drove her motivation to become a physician. Hieu shared his experiences as a community health worker in Uganda propelled his motivation to combat structural violence. Carlton described his motivation to pursue medicine in the South, to offer the African-American community a provider with whom they can identify.

    

To date, over 40 students have participated in the project. One participant reflected: “At first I was intimidated at the prospect of sharing my deepest feelings to a public audience, especially because I had never verbalized these feelings and in general I am a very private person. Ultimately, I'm glad I committed myself to this project and am proud to have my message out in the open.” Another described how sharing felt validating: “It made it seem real - everything that I had been through.”

I hope that by listening to the accounts of the courageous, insightful students whose stories constitute this project, others will follow suit and be inspired to share the personal stories at the heart of their journeys through the world of medicine.

If you or someone you know might be interested in telling their story about their experience in medical school, or if you have further questions about Inside Stories, please contact Annie and visit this website and on Twitter @Inside_Stories.

From NYC and the Leonard Lopate Show

This week, I had the honor of speaking with Leonard Lopate, the award-winning host of National Public Radio's WYNC show.

Among the topics, we spoke about:
* What is cookbook medicine and why aren't checklists always good?
* What happens when doctors don't listen? 
* Why is getting a diagnosis so important?
* How can patients help doctors help them?
* Is malpractice a big problem?
* How will the Accountable Care Act shape the future of medicine?

How to Get Better Health Care From Your Doctor

We received many comments from listeners. Among those posted is one from Ellen from Upper Manhattan:

"I have no problem helping a doctor be as good as she/he can be with me. The anger we feel at doctors comes directly from our fear of helplessness in a vital aspect of our lives.... For me, the antidote is empowering and caring about myself."

What do you think? I'd love to hear your thoughts!

To the Doctors: A Response (Part 2 of 2)

This is my second blog in response to some comments that were posted after my new transparency campaign, Who’s My Doctor, was featured on KevinMD and Medscape. As with the first blog, the responses from dissenting doctors are divided into three themes. I have listed these themes, followed by direct quotes and my responses. 

Theme #3: There are many other problems in healthcare to tackle. It’s stupid to tackle this issue. 

“She may be an ER doc but she does not seem to think. Does she think it will solve anything being transparent? Will that solve the HC crisis?”

“This is totally absurd. I am way too busy taking care of my patients who need my service as a physician, to spend my time defending myself against some media manufactured crap.”

“Should I tell the psychotic patient "yes, you're correct. Those voices in your head telling you to kill your mother are not your imagination". Of course not. Why? Because that patient is insane. As insane as our government manipulated medical system. Most ideas that I read about are just tinkering with an insane system. Insanity is making a medical insurance company pay for routine care. Does your auto insurance provide coverage for every ding and scratch of paint, oil changes, brake pads? Of course not. Government meddling, the purpose being for power and control of the citizen is what it's all about. Plain and simple. Boiled down to its raison d'etre.”

“Senators, Congress members and managers across every major industry accept gifts, business incentives, and informative handouts from their vendors - this is called free market, and any information exchange is protected by the 1st amendment. You fixers, like the meddling Dr. Wen, will be unpleasantly surprised to awaken to NO DOCTORS WILLING TO PRACTICE MEDIVINE (sic) UNDER HYPER-REGULATED GOVERNMENT CONTROL!” 

While there are no doubt other problems in our medical system that require other solutions, including malpractice and high cost of care, transparency is one way for us as physicians to say to our patients that we want to do our part to counter fear and reinstill professionalism. (The opposite is also true: if we are hiding from our patients our financial incentives when we order a test or procedure, that further leads to lack of trust and lack of professionalism.)

There is evidence to show that disclosure improves trust, and that patients want trust. In a recent study, “Most (patient) agreed that disclosure of competing interests by doctors is important (84%), believing this disclosure would help patients make better informed treatment decisions (78%). Eighty per cent of patients stated that they would have more confidence in their doctor's decisions if interests were fully disclosed, with strong support for verbal disclosure during the consultation (78%).” While some people may not wish to know about their doctors’ disclosures, many people—the majority—do. Having a voluntary disclosure by doctors gives interested patients that opportunity to find out.

One final point I’ll add to the doctors who really don’t like the idea of transparency is that disclosure is happening, with or without doctors’ participation. Info about doctors is increasingly out there, about “ratings”, “quality”, “patient satisfaction”, etc. Doctors may not like this—and we may not even like the disclosures that are getting put out there about us. But since it’s out there, why not have a website where doctors can control some of that information, and add our own philosophies of practice and who we are? Who’s My Doctor is an attempt to take back that control and put it back into the individual doctor's hands to say, this is who I am, this is why I do what I do, and I am telling you this because I have nothing to hide--everything I do is in my patients' best interests. 

To be sure, this is not the only solution to the vast problems in healthcare. However, we also cannot say that just because there are huge problems, that we should not do our best to do some small things that may have positive impacts. 

Theme #4: All of this information is irrelevant to patients. It’s not their business, and I wouldn’t want to know this about my doctor. 

“I think Dr. Goody 2 Shoes is not a strong enough title for Dr. Wen. Pretty soon we will have disclose where we buy our lab coats from, and what toilet paper we use. NO, this type of idiocy must stop. If this is allowed to proceed I envision my gas station attendant disclosing his investments in the Oil Company he works for, and my Server telling me that she came up with the recipe for the hot sauce on the table BEFORE getting to the specials. C'mon, wake up! Stupidity Outrageicus (sic)!!”

“I don't need to know that my doctor has an investment home in Maui or that she helps run her Synagogue's youth group and supports the World Wildlife Federation and the Coalition for Home Schooling or that she collects Precious Moments figurines."

“'Ballroom dancing', 'will never smoke a cigarette'. Please!! What will be next, 'I have never stalked anyone', 'I don't see porn'” 

Research shows that patients are more likely to comply with recommendations when they come from a doctor whose world view aligns more closely with their own. Who’s My Doctor offers the opportunity to find doctors who have particular expertise and interest in certain fields, such as preventive health, alternative medicine, women’s health, etc. This information is voluntary, so doctors don’t have to discuss their personal views on these issues. Some doctors choose to disclose personal stories and views, because we believe it humanizes us, and that sharing the stories allow patients insight into who we are and how we think.

We don’t presume that all information is relevant to every patient. Some patients may not wish to know their doctor’s revenue streams; others may not want to know their doctors’ personal information. However, some patients will want to know this information when making a decision about which doctor to choose. Rather than having doctors deciding what information is important, we prefer to give that choice to patients.

All of this is in the context that participation is voluntary, and doctors can choose what information they would like to disclose. Some doctors wish to only disclose potential conflicts of interest; others wish to have more personal information including their philosophy of practice of preventive care, women’s healthcare, end of life choices, etc, available for their patients to see. 

Theme #5: You pretend to represent doctors, but you can’t because you’re too [young, inexperienced, female, foreign, Asian, “socialist”, “fascist”, “anti-American”, stupid, etc]. Besides, you have personal gain, aren’t you making money from this thing? 

(The comments on the original sites related to this theme are not suitable for posting on this blog—if you’d like to read them yourself, please see links above.) 

I started Who's My Doctor entirely voluntarily, because I believe it is the right thing to do, not because I will have some personal gain from it. It is not a profit-making entity, nor will it ever be. My medical school is not a tenure-track institution so I personally do not gain financially or academically from this program (if anything, with the objections from so many doctors, putting myself out there could result in significant professional jeopardy).

At the moment, I volunteer my time at least 20-30 hours a week to this project because I believe it is important for our patients. I reiterate that I do not make any money from Who's My Doctor at all, and in fact volunteer my time to this cause that aims to bring together doctors and patients to the cause of transparency, service, and professionalism. 

I also do not profess to represent all doctors, all patients, or the healthcare system. Quite the opposite; I think that for too long, we have had a hierarchical structure that is doctor-centered and not patient-centered. I represent myself as a doctor and patient and caregiver. We need to hear the voices of more patients and caregivers--people who don't have "titles" or "legitimacy" as traditionally defined, but who have extremely valuable opinions when it comes to their health. 

It is to understand what people want from their healthcare that drives me to do what I do every day. You don't need an MD or some title in a hospital to speak on healthcare issues. In fact, the most important voices are the ones that aren't being heard.

Thanks, everyone, for reading. I'd love to know what you think; please comment below. If you are interested in joining Who’s My Doctor, please visit www.whosmydoctor.com and our Facebook page.

“Patients at Front and Center” & Other Dispatches From Stanford Medicine X #MedX

I have a confession: I was anxious about attending this week’s Stanford Medicine X conference. While I’m hardly anti-science, I advocate for the return of listening and a refocusing on the art of medicine. I write regularly about the low-tech revolution to healthcare reform—and here I was about to speak at a conference that’s “the intersection of medicine and technology".

My fears turned out to be unfounded. Rather than being a tech-fest, Medicine X sets itself apart from all the hundreds of medical conferences I’ve attended because patients are front and center. Patients formed the advisory panel; patients presented during every session; and, in fact, patients were the VIPs seated prominently at the front of the room. As multiple attendees noted, when there was a question, everyone turned to the patient—not the physician—for the answer.

Halfway through the conference, I had a realization: isn’t this how every medical conference should be? In fact, isn’t this how medicine is supposed to be, with the patient as an integral partner—and driver—of healthcare?

The three days of Medicine X were filled with dramatic examples of this. E-patient and cancer survival Liza Bernstein discussed the importance of dignity in healthcare: “It’s invisible, but just as important to us as oxygen.” Marble staircases and fancy furniture can’t make a good healthcare experience if respect and empathy are missing. “No matter how dire things are, you can’t let your dignity be taken away,” she urged.

Sam Gordon, an e-patient with terminal pancreatic cancer, shared his goals in health. “When the outcome is known, when curing isn’t possible, doctors have to heal,” he said. “My doctors are comfortable with ‘scientific time’, but how about let’s talk about my pain?”

There were many poignant moments when people shared their stories. They are reminders that in the often-sterile and detached environment of healthcare, it’s OK to show emotion. Emotion allows us to bond. Designer Amy Cueva contends that emotional intensity can be indicators of unmet need. “You must pay attention to pain, frustration, and anger,” she said. Our responses to the many authentic, emotional voices are testament to the critical importance of the story.

Both patient and providers discussed how the root of so many problems is miscommunication and lack of understanding. Stories help us connect, inspire, and heal, and Medicine X provided the venue to share our stories. It offered the space for disparate groups to break down our silos and work towards a mutual understanding.

Towards the end of the final day, I had another realization. I looked around the table I was sitting at. There was another provider, two patients, a hospital administrator, a software developer, and a researcher. We were attending the same sessions and participating in the same discussions—we were literally, in Katie McCurdy’s words, walking in each other’s shoes.

At the end of Medicine X, I feel invigorated. I’ve met some amazing advocates in the U.S. and internationally who are working towards the aim of participatory medicine and patient-centered care. I’ve listened to many stories and shared my own. 

More than anything, I am thinking, what an honor it is to be a physician! As Jason Albrecht says, what a great privilege it is indeed to “walk alongside, to guide, and to follow our patients.”

Guest Post: Lessons Learned In Caregiving

This is a special guest post from contributor Marcela De Vivo. 

One month ago, my son had major hip surgery at a major children’s hospital in southern California. I was so pleased when he came out of surgery without any complications.  “The worst is over,” I thought.

Little did I know that the worst was about to begin.

The day after his surgery, I noticed Nathan’s vital signs were erratic. He looked a little bit too pale and sluggish. I mentioned my observations to his nurse, who called the doctor. I requested for them to draw blood and look at his numbers. The doctor did not listen. No blood was drawn, and my son was left alone to continue his “recovery”.

The following day, Nathan wouldn’t wake up. Again, I told the doctors my concern and asked for blood work, but was once again ignored. As the day continued, my son became more and more pale. His heart rate was consistently elevated, and his respiratory rate became lower and lower. Then, it happened—his oxygen saturation dropped below 70 and he turned blue. Doctors rushed in and finally they realized that something was seriously wrong. 

This time, they drew his blood. Sure enough, the results showed that he was severely anemic. He had lost a lot of blood during surgery and needed a transfusion. Fortunately he recovered and no major damage resulted. 

This experience highlights a lesson I learned long ago as a mother of a severely disabled child: advocacy is KEY. This is just one of many lessons I’ve had the opportunity to learn. I’ve learned to find ways to help my son engage with his environment, to allow him to participate with other children his age, and to speak up for him against a school district that thinks him “unteachable.” 

I’ve learned, too, that your role as a caregiver is fundamental in the physical and emotional well being of the person you are caring for. Learning to be a better caregiver can help reduce the inherent stress that comes from so great of a responsibility. A good caregiver cares about the dignity, welfare and feelings of the recipient of the care.

Here a few ideas I’d like to share with you that you can improve your experience as a caregiver, as well as the experience of the person you are caring for: 

Patient Care

Do treat your patient/loved one with respect and dignity. Although your patient/loved one may revert to childlike behavior, he/she always needs to be treated as an adult. It could be demeaning to them to be treated as somehow lesser as a result of symptoms from the illness. Treat them as you would want to be treated yourself if you were receiving the care.

 

Don't assume that the care-receiver has nothing to contribute. Again, always treat your loved one with respect. He or she may be disabled in some ways, but that is not to say that they are useless and helpless as well. Even if they are not able to do much for themselves, give them every opportunity to cooperate in their own self-care. My son is unable to speak, but is able to answer yes by blinking and no by shaking this head. Through this rudimentary method of communication, we give him as many choices as possible: do you want this shirt or that shirt? Do you want to draw with this color? Watch that movie? This simple communication technique gives him control over his environment and the opportunity to engage with us.

Do engage in physical contact. Many of the ill, infirm or elderly who need care experience less and less human contact, especially if the condition continues for a long period of time. A hug, pat on the shoulder or light touch on the arm can improve the patient/family member’s mood and outlook.

Don’t exclude the patient during conversations. Even if the primary decisions are not made by the patient, direct questions and comments should be directed to all people in the room, including the patient/family member. Don’t act like they’re invisible, especially when discussing their care. Let the patient know that they are still important and that their attention and input matter. 

Do use verbal and visual cues. Miscommunication can be result of your patient or family member being unable to hear or see you. By using both verbal and visual cues, you decrease the chance of misunderstandings. 

Do stay organized. You will reduce a lot of stress by keeping track of all the little details required to care for your parent or patient. Make sure you have a master contact list of doctors, family members, apartment managers, neighbors, etc. whose assistance you may need. Keep track of all medications and timing of medications on a calendar or spreadsheet.  

Self care 
All too often, caregivers forget to take time to nurture themselves and find the support that they need. By taking care of themselves, caregivers improve their ability to help others. 

Do reach out for help. It is also important that you have support as a caregiver as well. If you find yourself floundering emotionally or physically from the responsibility of caring for someone else, reach out to friends, family, or find a support group. Ask family and friends to help out with the care—or with the mundane everyday tasks that you may have let slide, like household chores, grocery shopping, car maintenance, etc. Hire help if you need it. 

Don't forego sleep. It’s easy to sacrifice sleep when under duress; however, sleep deprivation has serious consequences. You will be less able to solve problems and concentrate, which can make you more impatient and cross—all of which leads to poor quality caregiving. You will be a much better caregiver when well-rested. 

Do practice coping skills. Avoid additional stressors when possible and try to maintain your self-composure while under pressure (being well-rested helps you resist giving in to your temper). Consider meditation or yoga to improve your ability to cope with stress. 

Don't compare yourself to others. Every situation is different; every relationship is different. Do the best you can for your loved one by treating him or her with dignity and respect and meeting all of his or her needs. Comparing yourself to others will only increase your stress and anxiety.

I hope these tips will help improve the quality of your caregiving and the quality of your experience as a caregiver. Taking care of yourself is a must, especially in the face of so much responsibility. And remember that you must be your own—and your loved one’s—best advocate.

Marcela De Vivo is a freelance writer from Los Angeles whose writing covers several various topics, including marketing, healthcare, technology and more. As a caregiver herself, she understands how stressful it can be and incorporates meditation and yoga to manage that stress. You can read more about her journey with her son at www.prayfornathan.org.

Choosing Hospitals Wisely (Is There Such a Thing?)

Here’s a thought experiment presented a recent conference on healthcare consumer (ah hem, patient) advocacy. Let’s say that you’re told you need surgery of your knee. It’s an elective surgery to repair a torn knee ligament, the ACL. Your insurance covers part, but not all, of the cost. How do you choose which hospital to go to?

At the moment, there is very little information for you to make such a decision. Many people will choose the hospital they normally go to or that their doctor is affiliated with. For the purposes of this thought experiment, let’s say that the following information is available to you:

·      Type of hospital (large academic hospital versus small community hospital versus orthopedic specialty hospital)

·      Number of ACL surgeries per year

·      Rate of infection and complications

·      Length of stay

·      Patient satisfaction

·      Total cost to system

·      Total out-of-pocket cost to you

What factors would be most important to you in making your decision?

Healthcare choices are highly personal, and it’s not surprising that participants at the conference came up with widely different answers. Many said that they would rely on recommendations. Citing that user-originated online ratings of hospitals are not yet widespread, they stated that they would ask for feedback from family and friends.

“These are the people I trust, so I trust their judgment and experiences,” several group said. “If I ask a stranger, their values may be different from mine.”



Some looked at the potential negative consequences. “Hospital-acquired infections and complications are bad, and I want to avoid those at all cost,” a participant said. It’s not clear, though, whether data will be granular enough to provide specifics that are helpful in the comparison. What if hospital-acquired infections for the hospital overall are high, but complications for that procedure are low? Are there certain complications that are worse than others—maybe you’d put up with pneumonia, but not if your wrong knee were operated on?

Others tend to value the potential positives. Some like the idea of going to academic centers, which are seen as “better” than community sites; some others like orthopedic specialty hospitals because of their brand-name appeal. A higher number of procedures connotes confidence, as does greater patient satisfaction.

Interestingly, cost was much lower in the decision algorithm. Nobody cited cost to the system as a factor. This was not surprising, but what was surprising was that cost to individual was also not a major factor. As one participant put it, “I don’t want a discount surgeon.” There still seems to be the belief that the more expensive is better, or at least that no expenses should be spared when it comes to health—at least for those middle-class conference participants.

Finally, many would not even make the choice at all. They would go based on the recommendation of their doctor. According to multiple participants, asking their doctor about the possibility of a hospital different from their recommendation was difficulty. “How do I even go about addressing it?” they asked asked.

This exercise underscores an important realization: in the movement to empower patients, we must keep in mind that healthcare is not transparent, and not a true market. There is a difference between shopping for a TV and shopping for a surgeon. This is not to say that more information isn’t better; it is important for us as patients to get more information so as to make a better decision. But we must also be cognizant of the type of information that is available. Even in this information age, little is currently available to make a decision of what doctor or which hospital to choose. Ultimately, it will take time to develop trust in a source enough to rely upon it to supplant word of mouth and personal experience.

The Trouble With "Traditional" Research and a Call to Action

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.

Rebranding “Patients” as “Healthcare Consumers”: Tread with Extreme Caution

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.