Editor’s Note: In a recent Health Affairs essay titled “What ‘Patient-Centered’ Should Mean: Confessions Of An Extremist,” Don Berwick surveyed the debate in the health policy community over how the principle of “patient-centeredness” should be defined and implemented. He argued for “a radical transfer of power and a bolder meaning of ‘patient-centered care,’ whether in a medical home or in the current cathedral of care, the hospital.” (For nonsubscribers to Health Affairs, full-text access to Berwick’s article is available through the link in the “In the Spotlight” section of the Institute for Healthcare Improvement’s home page.)

Berwick’s essay elicited a number of comments. Several are presented below, along with Berwick’s responses. Berwick is a leading quality improvement expert and president and chief executive officer of the Institute for Healthcare Improvement in Cambridge, Massachusetts.

Robert B. Teague, Prinicipal Consultant, RBT Services. Dr. Berwick is on the right track for a number of good reasons that he outlines. All systems produce the outcomes that they are designed to produce. The health care system is no different. Physicians have been taught to work a virtual conveyer belt of patient activity. Unfortunately, they have also begun to think of patients as the objects of their specialized activity.

The current system is at its best caring for acute, episodic conditions. A new system that is required to manage chronic health conditions over long periods is needed. The only way a system that focuses on the prevention and management of chronic health conditions is financially and process sustainable is for the majority of the decision making to reside in the hands of the patient, which all clinicians know is what really happens anyway.

There will be a reordering of the power relationships in clinical medicine to accomplish this. If given the access, individuals will both prevent and manage the majority of their condition. Focusing on individual normal values instead of population-based data will become the rule. One need not wait for one’s genome to practice individualized medicine. The iPhone only awaits these applications for this to be reality.

Physicians should manage exceptions and complexities that require professional judgment, a step above informed judgment, and not the routine. Physicians and researchers should assist with deciding what the routine is, but the execution of the routine will continue to reside in the hands of the individual with the condition, as it indeed does now.

Profession-centricity, as Dr. Berwick notes, will not go quietly into the night, willingly moving to a higher and more useful purpose. Patient-centricity is the only approach, in my view, that will result in a successful, effective, and sustainable system of care in the medical reality we now face.

Don Berwick: Mr. Teague’s comments bring vividly to mind a young man I was once caring for who had a serious, lifelong chronic illness that had brought him into the hospital dozens of times. I asked him what “three improvements” in his care he might wish for. He answered: “Please tell me what you are going to do before you do it to me; please talk with each other; and please ask me what I think.” He expanded on his third idea with the comment, “I probably know more about my disease than most of the people taking care of me do.”

Dr Ramachandran Balaji, Principal Consultant – Healthcare, Infosys Technologies Ltd, Bangalore, India. I would like to heartily endorse the sentiments expressed in the article, as a physician, a patient, and a health care informaticist! I have been expressing these sentiments in trying to promote the extensive use of clinical decision-support systems to level the playing field between all health care stakeholders and strongly empowering both patient and physician in entering into a true “dialogue” in caring for the patient. The master-slave relationship has to become a true partnership based on complete transparency and honesty.

Another area that I think needs to be written about to fully realize the goal of this article is the need for all clinical service providers to be truly humble in understanding that the human body is so intricately tied together, both physically and to the human mind, that in seeing the parts extremely closely, we often forget to see the whole!

For example, we need to be open enough to accept that Western medicine/modern medicine may not have all the answers for all the health problems that affect humanity and that many traditional/alternative systems are truly “curative” in areas in which modern medicine fails patients. If we aim to be truly holistic in our approach and remain concerned only with helping the patient, then all limits are off, and we are free to pursue any and all possible remedies together with the patient. A truly exciting and worthwhile thought!

Don Berwick. Dr. Balaji’s thoughtful posting reminds me of a conversation with Peter Senge a few months ago, in which he told me what he regarded as the “eastern” definition of “health” —  it is “the capacity of the body to heal itself.” I am an undaunted fan of evidence-based practice, but I think that other cultures have some “evidence” we ought to become more curious about.

Greg Scandlen, Founder, Consumers for Health Care Choices at the Heartland Institute. Congratulations for a thoughtful analysis. You are on the right track, but I would urge you to think about a couple of additional things.

First, the terms “patient-centered” or “patient-centric” don’t get at what is needed, which is patient empowerment. “Patient-centered” is a PR term used by those who don’t really want to change. It allows them to say, “We are fully focused on the patient,” while they are thinking about what they will do to the patient rather than for the patient. We use the term “consumer-driven” because empowerment needs to start well before people become patients.

Second, professionalism and consumerism are not in conflict. You mention that your wife is an attorney. The legal profession could be a model for where medicine needs to go. But as with most problems in health care, the relationship between patients and providers is distorted by the presence of third-party payers. I hope you will join with us in helping reduce their pernicious role. (And by the way, “third-party payment” is not the same thing as insurance coverage.)

Third, you need to include convenience in your list of desirable qualities. Unless I misread, the only time in your essay that convenience was mentioned was in the context of the convenience of providers. Patient inconvenience is rampant in our system, and it deters people from getting care.

Next, I was pleased that the only time in your article that “population health” was mentioned was from the original 1998 JAMA article. Physicians cannot do their jobs if they have only one eye on the health of their patients and the other eye on the health of the population. If every patient is made as healthy as can be, the health of the population will follow.

Also, there is a model already available for precisely what you were trying to do with your friend in the cath lab. That is known as concierge medicine or “direct practice.” I urge you to look into it. It avoids the massive bureaucracy associated with most “medical home” models.

Finally, let’s remember that every penny spent on health care comes from us as consumers. There is no other source. And every penny is supposed to be used for our benefit. All of the interests are welcome to participate if they add value to the process, but only consumers can decide whether that has happened. It’s our money and our health at stake.

Don Berwick. I am uncertain about just what terms serve us well, and Greg Scandlen’s posting is helpful in that regard. My own choices of vocabulary have become tactical over time. I don’t have much success trying to force particular terms on the people with whom I am exploring ideas about improvement. (One surgeon once said to me, “Every time someone calls a ‘patient’ a ‘customer,’ an angel dies.”) I guess my approach now is to see what words my audience wants to use, and then to explore the underlying ideas, rather than debate labeling. That said, I have trouble with the idea of “partnering” with patients; I’d prefer a word that more clearly acknowledges the primacy of the patient’s role.

Linda A. Bergthold, Consultant, Self-employed. I could not agree more about the need for more respect and dignity and control by patients. One of the sites of greatest indignity, other than the gown that opens in the back, is the reception area. There, a patient is subjected to long waits, often while staff chat with each other rather than recognize the patient as the ultimate customer. How many times have I wanted to shout, “But I pay your salary! I am your boss, not the other way around.”

The only area with which I disagree is your faith that a doctor would be willing to tell a patient why an MRI might not be necessary. Your somewhat cavalier disregard for the cost of these procedures is scary to me. I have a fair degree of faith that patients would not take undue advantage of unnecessary treatments; I don’t have the same faith that doctors would restrain themselves from suggesting procedures and treatments, particularly if they are being paid to do more. So before we turn over all decision making to patients, doctors have to be trained first and reimbursed in a way that does not reward overuse.

Don Berwick. Ms. Bergthold’s suspicion about the motives of doctors as they order tests and procedures may be well founded sometimes. Atul Gawande’s June 1, 2009, New Yorker article on McAllen, Texas, surely bolsters her case. On the other hand, I have a, perhaps romantic, sense that most doctors are trying to make the right calls most of the time. They may be influenced by local supply of services and habits, but that influence is unconscious and their intentions, I truly believe, are to be helpful.

Marjorie Ginsburg, Executive Director, Center for Healthcare Decisions. Don Berwick’s article is compelling and heart-felt, and it would take a veritable curmudgen to question the principles he so eloquently describes. So call me a curmudgen.

There is a tremendous difference between rewriting the rules to allow a more humanistic approach to patient care and throwing out the rule book on evidence-based medicine. Berwick has ignored the needs of the third person in the doctor’s office: the taxpayer or employer who is paying the cost of the care that his patient wants but may not need. These bystanders are the same ones who can no longer afford health insurance or who face exorbitant cost sharing to get the care they do need. The principles Berwick espouses are important but should not trump a value that is the sine qua non of health care reform: assuring that our shared resources are spent wisely.

Don Berwick. Marjorie Ginsburg is no curmudgeon. She speaks for a large and thoughtful group of critics who fear that patient control and evidence-based care are often on a collision course. I doubt it. The work of scholars like Annette O’Connor and Judith Hibbard, for example, reveals enormous wisdom in the choices that informed patients make. Our “evidence” is a great resource in proper social resource allocation, but so is the wisdom about what really may help, and what really may not, that informed and activated patients bring to us if we welcome it. Patients do get care they do not need; but I suspect most of that happens because of what they are told to want, not what they really want.

Elizabeth L. Bewley,  President & CEO, Pario Health Institute. Don Berwick, as usual, got it right: health care needs to be patient-centered in a way scarcely imagined today. In fact, I suggest that the shift needs to be even greater than he proposes.

People who focus on fixing processes know that it is critical to get clear up front about the purpose of the process one is trying to improve. Opinions about the purpose of health care in the U.S. appear remarkably divergent: Is it to diagnose and treat disease? Afford individuals the maximum opportunity to pursue treatment to improve health or stave off death? Improve population health?

None of these quite hits the mark. I suggest instead that better outcomes are likely if all players act as if the purpose of health care is “to enable people to lead the lives they want.”

Berwick argues that patient-centeredness should not be seen simply as a means to the ends of improved safety and effectiveness, but as a goal in its own right. What I propose is that even clearly laudable goals such as “improved population health” should in fact be seen simply as means “to enable people to lead the lives they want.”

When this purpose becomes health care’s North Star, very different solutions to day-to-day issues in health care delivery are likely.

Don Berwick. I agree completely with Ms. Bewley. The value of health care lies in the production of health, itself. I recoil when I hear “throughput” as a measure of productivity in health care. What better measure of results could we ask for than the one Ms. Bewley proposes: “to enable people to lead the lives they want”?

Deborah H. Ward,  Founding Faculty Member, Betty Irene Moore School of Nursing, UC Davis, Sacramento. Don Berwick has moved many audiences with sad tales of inhumane care, and I’ll bet he will do so again with “Confessions of an Extremist.” His stories of mistreatment and cruelty have multiple knotty and frustrating subtexts: reimbursement that rewards bariatric surgery instead of the hard work of coach-supported weight loss and exercise; vital nursing work that still competes for status and respect; medical education clerkships that may expose students to tyranny and caprice instead of reasonable hours and standards for true learning; the un-matched triangles of cost and need: while the need is for chronic and long-term care, the big business is in acute care. The medical home — a full employment project for family practice and internal medicine — doesn’t pretend to address these perversities of cost, education, and turf. But if medical homes did act as little experiments in turning control over to patients, they could still serve us well. Maybe after a few years of being in charge, consumers would insist on a radical change in professional turf, clinical practice, and the financing of care.

Don Berwick. I agree with Ms. Ward that the idea of “medical homes” can be especially fruitful if, as she suggests, they act as “little experiments in turning control over to the patient.” What a nice notion!

Christopher S. Ewin, Family Physician, Past President, SIMPD. I appreciated Berwick’s comments. I understand his fear. However, the solutions offered to date will not solve patients’ dilemma of trying to find a new medical home — especially when the providers are leaving in droves and few are going into primary care.

Greg Scandlen correctly notes an answer that we have found on the front lines as PCPs. PCPs with “direct practices” have direct financial relationships with their patients. The term “concierge,” although catchy, does not truly capture the meaning of the new business models that PCPs have implemented in their own marketplace.

Berwick’s definition of the patient-centered medical home is good. The Institute of Medicine’s definition is good, too: Patient-centered care is defined as “care that is respectful of and responsive to individual patient preferences, needs, and values.” However, Marcy Zwelling, the Society for Innovative Medical Practice Design’s (SIMPD’s) new president, would simply define the patient-centered medical home as giving her patient a “better day.” I agree with the joint principles developed by the AAP, AAFP, ACP, and AOA describing the characteristics of the patient-centered medical home. We just disagree completely upon the methods.

It boggles the mind that leaders of primary care don’t seem to understand our hand-cuffed businesses. I’m so glad I don’t use an ICD-9 or CPT code. All the patient wants is a diagnosis and treatment plan, not paperwork. Has anyone asked physicians on the front lines whether they really want pay-for-performance as a method of getting paid? Fee-for-service is OK, but I don’t do it because if I don’t see the patient, then I don’t get paid. If Greg is in New York, I treat him for free and spend 20-30 minutes on the phone finding a pharmacy for him. That’s why many are embracing a fee-for-care model (the true “direct practice” defined in the state of Washington) and a fee-for-noncovered-services model.

The reality is that patients and physicians dislike dealing with third parties (let me know if anyone likes this, besides insurers and government). We counsel our patients to get out of abusive relationships. We don’t want to become data collectors for the government or insurers, like our pharmacist colleagues. We want to practice medicine the way we were taught in four years of pre-med, four years of med school, and three years of the rigors of residency. Our boards certify our capabilities. And, we’ve taken plenty of tests, including testing ourselves with the lifelong thirst to learn and provide the best patient care. We have quality-driven practices, not volume-driven, and the patient judges our competency and value based on transparent fees that they agree upon. They trust their care, and many times their lives, in our hands. They understand our character, drive, and love for each one of them.

To Berwick’s point: To accomplish a new health system design, PCPs need to adopt new business models. The answer: decouple primary care. Access to high-quality care at a reasonable price determined by the patient. Who would have thunk it?

One last thought on primary care: We call it “patient-financed health care,” not “patient-centered.”

Don Berwick. I’ll have to think more about Dr. Ewin’s interesting proposal. Surely, the intermediation of insurers has put a costly form of distance between physicians and patients, and drained energies from both through administrative complexities. What I don’t yet understand about “patient-financed health care” is its effect on social equity and justice. I personally regard health care as a human right, and I am supportive of policy changes that make that a reality, not ones that create regressive barriers to care among those with the fewest resources. I do not assume that Dr. Ewin is proposing that, but I’d want to look before I leap.

Ira E. Williams, Author – Consultant. While the concept of the medical home is becoming a reality, thousands of needless deaths will continue to occur in the Quality Chasm as demonstrated by these facts: To Err Is Human promised in 1999 to reduce by half the estimated (by Leape and colleagues) 98,000 needless deaths in five years. Current estimates are that more than 2,000 people die per week in hospitals across the country from preventable events, indicating zero progress. Don Berwick’s article appeared simultaneously as Drs. Leape and Corrigan were presenting “Reflection on the Past 10 Years: Why Have We Not Gotten Further?”
“Misuse” can only exist after a negative judgment of questionable patient care has been made. The Quality Chasm can best be viewed between the idealistic rhetoric of patient safety efforts of the last ten years and the anguish felt by survivors of “never events.”

The Quality Chasm remains unchanged 20 years after its first discovery, and patients judging medical quality will never reduce that chasm. Doctors are the best judges (or should be) of other doctors -– but doctors do not know how to judge other doctors. A system that would allow doctors to fairly judge other doctors is far more attainable than imagined. I know, because I can provide one. Debate, anyone?

Don Berwick. The self-regulation that Mr. Williams suggests is, of course, at the heart of the espoused model of professionalism. The problem is in the execution of that plan. I think that, sadly, medical cultures sometimes hide incompetence rather than correcting it. We’d need to change that if we really want to rely on peer-to-peer supervision as a mainstay for quality. That said, I do have personal experience with a strong peer culture, having practiced for 20 years in a staff-model HMO, where my supervision by and collegial counsel with my professional partners were constant and valuable.

Diane L. Kelly, DrPH, MBA, RN, Principal Consultant, Kurron Shares of America, Inc. While Don Berwick fears his loss of dignity, I am a member of the growing list of patients and families who have experienced the loss of dignity, the failure of providers to listen, and the rejection of informed patients’ and family members’ desire to participate in their care. These failures have led to emotional distress; numerous instances of underuse, misuse, and overuse of services; and hospital-acquired complications resulting in the dramatic reduction in functional status, diminished quality of life, and untimely death of my mother.

My personal experiences, combined with my professional experiences as a practicing RN, teacher, and consultant, have shaped my views of patient-centered care. Eleven years ago, I was quoted in the Wall Street Journal as saying, “We hold people’s lives in our hands at a very vulnerable time. . . . Health care is about a personal encounter.” Since that time, I have come to better appreciate the crucial role of leadership at all decision-making levels of health services organizations in establishing organizational direction, allocating resources, and designing metrics that support the personal encounter.  A commitment to purposefully paying attention to the interaction, to the person, in the moment drives behavior within the personal and organizational context in which care is provided. Some refer to this as “mindfulness,” which may be compared to ideas of situational awareness, group climate, and interpersonal relationship described in the human factors literature. By increasing our personal skills in paying attention, we can concurrently advance both patient-centeredness and patient safety.

Patient-centered care and professional teamwork go hand-in-hand. Phil Higton, a former British Airways pilot, describes the concept of “authority gradient” as foundational to crew resource management. A gradient implies a fluid approach and resonates with me to inform both professional and patient partnerships. I prefer to manage, not to give away, the locus of control, in establishing patient partnerships. This approach permits the individualization and customization called for by Berwick, according to patient needs and preferences. Like the concept of situational leadership, one may then actively seek to understand, define, and differentiate between what the patient controls and what the provider team controls, on both an individual and population level. For example, my mother’s only request was for providers to treat her kindly; as her medical proxy, I desired detailed, clinical information on which I could base care decisions.
My hope is that as the discourse on patient-centered care grows within the physician community, they may embrace longstanding efforts by other groups and other disciplines as designing and improving our system must include transdisciplinary as well as physician views.

Don Berwick. I am sad, though not surprised, to hear Dr. Kelly’s story. Keeping the person before us — “purposefully paying attention” — is exactly the task. I appreciate her eloquent reminder.

Overall, I am struck by the supportiveness of people’s comments. One might have expected more pushback. Indeed, in online postings following a recent New York Times article summarizing my piece in Health Affairs, there are more than a few angry voices — some testing the edges of civility. Skeptics there think that my views are unrealistic, and that they disregard and insult the good intentions and specialized skills of physicians. Of course, my proposal is to liberate the best instincts of physicians and other health care professionals, who are, after all, every bit as vulnerable, human, and needy as those they serve, among whom they will someday find themselves, too, as patients.