February 9, 2024
Dear Interested Readers,
Reflections on Our History of Bias in Medicine and Experience Managing Chronic Diseases
Hospital
I want to bring your attention to two recent articles in The New England Journal of Medicine.
The first article was published in last week’s Journal and has a long title: “Experiencing Historical Injustices in Medicine and the Journal Explaining Health Inequities—The Enduring Legacy of Historical Biases.” I am sure that opponents of “Critical Race Theory” will avoid this article and perhaps cancel their subscriptions to the Journal, but I think that you should click on the link and take a look at it. The NEMJ appears to want to make up for its participation in and publication over two centuries, since 1812, of articles that contain bias against almost every non-western European population. The heading reads:
This article is part of an invited series by independent historians, focused on biases and injustice that the Journal has historically helped to perpetuate. We hope it will enable us to learn from our mistakes and prevent new ones.
A “mea culpa” can be self-serving, complicated, and boring, but I applaud this effort. In retrospect, they demonstrate that there has been incalculable human damage done by supposedly scientific papers that went through editorial reviews but were flawed by anecdotal speculation and supported by biased and untested speculation about people of non-western European heritage. The Journal also recognizes in the article that the mentally ill and physically disabled of all ethnic groups have also suffered from their history of editorial insensitivity.
The first paragraph states the problem and declares the necessity of its acknowledgment of its past errors.
When the Journal was launched in 1812, claims had circulated for centuries about differences in anatomy, physiology, and disease susceptibility between different human populations. Physicians’ persistent belief that these differences are innate has long drawn attention away from other possible causes of health inequities. As the Journal explores its history and acknowledges its role in voicing and perpetuating racism and discrimination, it must examine how it grappled with the problem of difference.
It’s a relatively long article with many confessions and demonstrations of the Jounal’s failure from 1812 to the present. In so many places it underlines the impact of the social determinants of health on economically disadvantaged populations and our tendency to ascribe their poor health to their genes or their unhealthy habits rather than the unhealthy factors over which they have no control.
Even if you don’t believe that you have been a participant in the damage done, it is my opinion that we have had a collective failure to begin to address what we know about how the social determinants of health and biases negatively impact the health of disadvantaged minorities and people who are not White. The persistence of the situation makes us all culpable for unnecessary human suffering going forward.
The task is huge and likely won’t be completed in our time, but that is no excuse for continuing to wait to begin the work which will ultimately be a combination of radical change within individuals, institutions, and government. The role going forward of the Journal will be to be careful to avoid further biases as it gives us important data that will enable change and the reduction of the harm that biases have unfairly caused and continue to cause.
They end with a description of what they can do. I wish there was a promise to be even more involved in the repair of past damage and the avoidance of future harm, but this is a start.
Important questions remain. Even the most basic decisions (e.g., which population descriptors are appropriate when considering human diversity in medical research and practice) are contested. American medicine has long accepted racializing narratives that propagate social perceptions about White superiority. Deliberate thinking and action are required to resist those narratives. We must decide carefully which policies and practices are justified — scientifically and ethically — as we contend with the nature and meaning of human differences. The Journal can act on its commitment to health equity not only by publishing the best, most rigorous research on this important topic, but also by interrogating the racial assumptions and sociopolitical consequences of everything it publishes.
Amen!
The second article appeared earlier online and now is formally published in this week’s Journal. It is from authors who work at the FDA and outlines some of the things they are doing and can do to support innovation and improvements in their approval and review of new treatments for our chronic diseases. It is entitled “Addressing the Challenge of Common Chronic Diseases — A View from the FDA.”
The article put me in a reflective mood. I doubt that anything has changed more in the practice of medicine in the more than fifty years since I started medical school in 1967 than the awareness of the importance of the management of chronic diseases in improving the longevity and health of the population. The practice and the importance of the primary care physician have been dramatically changed, and now we realize the impossibility of good chronic disease management without supported patient self-management.
One of the things that made Harvard Community Health Plan a dramatic step forward was Dr. Ebert’s focus on preventative care and the way his model employed advanced practice clinicians and others in a division of labor that recognized the changing character of practice. He also wrote about the need to improve access to better primary care, especially in the inner city and rural areas.
In the forties, fifties, sixties, and for eons before, we went to the doctor when we were, sick, infected, injured, pregnant, or in pain. Often, especially with cancer, the only hope for a cure was through referral for a radical surgical intervention or the benign natural history of what we had.
I wonder sometimes whether our current workforce shortages, especially in primary care, arise from a slow recognition and failure to adequately respond to the reality of how the work of primary care has changed as we expand the role of physicians from responding to acute problems to include the increasingly complex work of chronic disease management. For many people, walk-in urgent care centers are the only option for care because it has become harder to find primary care practices that are open to new patients.
Walk-in care may be able to address acute illnesses and injuries, but it is unlikely that patients will find the support or continuity of care that is necessary to successfully manage and prevent the progression of their chronic diseases at walk-in clinics. The article notes that many young people have chronic problems that will benefit from better management and that many patients have more than one problem.
The article has an introduction and graphic that sets the stage for the FDA’s vision of its proper role as it reviews the tools and drugs available to improve the management and outcomes of our chronic medical problems.
Of the 10 most common causes of death in the United States, 7 are chronic diseases: heart disease, cancer, Alzheimer’s disease, diabetes, and chronic lung, liver, and kidney diseases (see graph). These common chronic diseases are partly responsible for the recent startling decrease in life expectancy in the United States. Such diseases seldom occur in isolation: 58% of U.S. adults have two or more chronic diseases. Even among younger adults (those 20 to 29 years of age), more than one in five have multiple chronic diseases.
The article gives us a view of how the FDA sees its role, and how it is planning to improve its performance. They conclude by emphasizing the partnerships that will be required if we are to do better and begin to reverse the decline in life expectancy that can be attributed to suboptimal chronic disease care.
The pervasiveness of common chronic diseases requires a broad coalition, one that should include the biomedical and digital health industries, health systems, payers, patients, patient advocates, policymakers, and other government agencies. The reward for such a united front could be the realization of a thriving and more equitable society.
It is interesting that as an agency they think only in terms of other agencies and institutions. Perhaps they lump doctors, nurses, advanced practice clinicians, pharmacists, and other providers of care who are in direct contact with patients under “health systems.” I have never seen an example of long-term successful self-management of chronic disease without some sort of continuing relationship between the patient, also often the family, and individual health professionals who were a trusted support. In my experience, effective chronic disease management begins with a well-supported primary care team. The FDA’s role in providing and reviewing the efficacy of treatments is crucial but secondary to the primacy of effective patient engagement with clinicians who educate and support them in their effective self-management. It is legitimate to muse that to some degree our declining life expectancy driven by chronic diseases is a result of our undersupported and declining primary care assets.
Reflections on the Challenges of the External Environment
As I continue the story of the development of my medical-moral sensibilities, I realize that it has been a continuing educational process to this day. As I relate the linear story of my experience as a physician, practice leader, and health system CEO, I realize that one huge leap in that learning process occurred when my scope of responsibility expanded from the internal work at Harvard Vanguard Medical Associates and Atrius to include the external community.
Suddenly, I was the primary face of our organization in the community of organizations that were enthusiastic about the Triple Aim. We had a voice as one of the largest and most innovative practices in the country. Other organizations wanted to hear what we were doing, and iI was the voice of the largest medical practice in New England. In short order, I became a frequent speaker at national conferences and was invited to speak and share our experiences at other forward-looking medical institutions.
As the story continues, I need to move the focus to a view of the challenges of the external world of healthcare that existed for us in 2008. Our mission required that we endeavor to offer patient-centered care with the highest quality and safety at the lowest possible expense. We also wanted it to be easy for patients to access the service they needed with care including attention to their mental health. We recognized that much of what impacted health was the environment and the social determinants of health, and to achieve our internal objectives we had to be active in the community. We needed to express our point of view in the places where healthcare policy was created. Those external objectives and the challenges of an environment that included powerful forces that were defending a status quo that advantaged them and not aligned with our objectives, or in my opinion, the Triple Aim, would occupy much of my time.
Internally, my plate was more than full with work as I tried to lead by being present and transparent with daily font line interactions as we introduced and supported innovations like Lean, and developed and supported more chronic disease management programs, all while focusing on employee satisfaction and refurbishing our buildings, improving our lab services, and updating our electronic medical record.
I soon discovered that beyond my internal work, I needed to spend a lot of time out of the office visiting and trying to influence our supporting hospitals, other critical medical suppliers, our insurers, the Harvard Medical School, politicians as individuals, and policymaking agencies at the local, state, and federal levels. I made several trips to Washington, and I went to Beacon Hill so often that I was required to register as a lobbyist even as we engaged political lobbyists at the state and federal levels. In a moment of rapid change, we were pressing our case for the creation of a more equitable system of care.
I was automatically, by my position as CEO, on many local ad hoc healthcare committees and state-sponsored committees that were looking at healthcare reform in Massachusetts. I was a member of the advisory committee of the state’s quality and cost council. As the Harvard Vanguard CEO, I was automatically a member of the board of the captive malpractice insurance company that had been by established by Tom Pyle, the former CEO of HCHP, to serve all Harvard-related hospitals and practices. At the meetings of CRICO, the Controlled Risk Insurance Corporation, I was exposed to efforts both to usher in a new day of quality and safety, and the resistance of the status quo. It was an education for which I am deeply grateful. I retain huge respect for CRICO and its leadership. CRICO has been a significant contributor to Massachusetts’s position as the best-rated state for healthcare in the country.
By 2008 “Romneycare” had been passed, and the number of uninsured people needing coverage for care in Massachusetts had fallen to almost zero. I was delighted with that development, but the victory in access created complex cost problems, so that Massachusets had the best access, highest quality, and most expensive healthcare system in the country.
Since we were the state with the greatest healthcare costs, and America had the highest per capita healthcare costs in the world, I would tell our practice that we were caught in the most expensive healthcare environment in the universe. The challenge was cost, and the challenge was not evenly spread across all organizations. The reimbursement for some newly insured patients did not cover the cost of their care. We decided to provide care to all populations which meant that we needed to generate income from well-supported populations to subsidize the care of those whose reimbursement did not cover the cost of the care that we were providing.
Let me go back to 1980 to add some history and perspective to the healthcare challenges in Massachusetts in 2008. In the early eighties, there had already been a significant change in the landscape of the medical environment closest to me. The Peter Bent Brigham and other nearby hospitals, the Boston Hospital for Women, and the Robert Breck Brigham Hospital, a hospital that focused on chronic diseases, rheumatic illnesses, and joint disease, merged into one hospital. Together they built a new bed tower that they shared and initially called themselves the “Affiliated Hospital Center.” That name was a flop and shortly the entity became today’s Brigham and Women’s Hospital. Previously in 1966, the Boston Hospital For Women had been created by a merger of the famous Boston Lying-In and The Free Hospital For Women.
The merger of the three hospitals to create the Brigham and Women’s Hospital was in part to address the market power of their cross-town Harvard sister, the Massachusetts General Hospital or MGH. Some locals say the initials MGH stand for “Man’s Greatest Hospital.” Suffice it to say that when you threw in the Beth Israel Hospital there was intense internal competition among the Harvard Medical School-affiliated hospitals and institutions. Added to the competition was the reality that huge loans at high-interest rates had been taken out to finance the new hospital. I bought a home in 1981 with a mortgage rate of 18%. I don’t know what the new hospital affiliation was paying in interest, but rumors implied that it amounted to tens of thousands of dollars a day. Still worse was that the hospital chronically ran a low occupancy rate.
The finances of the day have for me always been the explanation for why the Brigham offered HCHP incredibly low prices and advantageous clinical opportunities to close its small hospital and move all of its hospital care there and at the Beth Isreal to the Brigham. The move was facilitated by Dr. Joe Dorsey and Dr. H. Richard Nesson. Dr. Dorsey and Dr. Nesson were heroes of managed care and healthcare innovation.
Before he moved to the Brigham, Dr. Nesson had been the original medical director for the HCHP doctors who used Beth Isreal Hospital. Dr. Ebert had wanted to include both the Brigham and the Beth Israel in his creation of HCHP. Initially, HCHP had two medical directors, Dr. Nesson was the CEO of the Beth Israel-related practice and Dr. Dorsey was the CEO of the Brigham practice, Dr. Nesson left HCHP shortly after it was launched to assume responsibility for the ambulatory practices at the Brigham. In time he was promoted to be the CEO of the Brigham.
There was a natural affiliation between Dr. Nesson, Dr. Dorsey, and the Brigham. The first change was that we moved the care at Beth Isreal to the Brigham. That had little impact on me, but it was the beginning of even more change. So, it was not a surprise to me when it was decided that we would move all of our surgeons, medical specialists, most of our OB services, and even routine hospital care to the Brigham. As you might remember, for me the closing of our hospital was a personal loss because I enjoyed the responsibilities I had at our small hospital. For our organization as a whole, it seemed to be good for everyone else until it wasn’t.
By 2008, other big changes had occurred. In 1993, in a process that was principally led by Dr. Nesson, the Brigham and the MGH set aside enough of their institutional rivalry to join forces as Partners Health Care, now Mass General Brigham. Dr. Nesson was probably the principal author of the idea that became Partners. For the first few years, he was the CEO. I have often wondered how he would feel about the outcome of the union he had created and led. He was widely respected and deeply mourned when he died in 1996 while exercising shortly after retiring.
I think there were noble objectives at the beginning of the Partners union. I have even seen a document that suggested at one point that Beth Israel Hospital was included in the idea. After it was created and after Dr. Nesson retired and then died, Partners was a loose and competitive affiliation with internal hostilities. Each hospital remained essentially independent in its care delivery. but they did integrate much of their administrative services. Facetiously, it seemed to some that the “partners” and former rivals had a truce that gave the MGH control of everything north of Beacon Street and the Brigham control of everything to the south of Beacon. United, they acquired control of other hospitals and ambulatory practices and dominated healthcare in Massachusetts. The market power of Partners allowed them to obtain the most generous reimbursements from the payers. Other hospitals and practices in the state were treated less generously.
By 2008, we lived in the shadow of Partners. We had begun to provide some of our hospital care at the Faulkner Hospital, one of the hospitals that was affiliated with the Partners network of local hospitals that fed the Brigham. Ken Paulus whom we hired as CEO of Harvard Vanguard was the Chief Operating Officer of the Partners Ambulatory network of practices when we hired him in late 1999 after Charlie Baker left us to become CEO of Harvard Pilgrim. The power of Partners was demonstrated when they refused to accept a Tuft Health Plan contract offer and tens of thousands of patients insured by the Tufts Health Plan changed their insurance plans.
As I began my time as CEO, I was quite aware that we were paying dearly for our continued affiliation with Partners. Harvard Vanguard had briefly considered offers for affiliation from the Beth Israel Hospital while we were recovering from the financial collapse of Harvard Pilgrim. As board chair at the time, I was impressed with their presentation, but the majority of our board and the executive team felt that a shift in hospital affiliation in the midst of all we were trying to overcome would be an unwise move.
Not long after I became CEO in early 2008 followed by the collapse of banks and the economic recession that faced the country as President Obama took office, the CEO of the Brigham asked me to come to his office. We exchanged the usual pleasantries, and then he told me that he was sorry, but because they expected some losses from other contracts and flat reimbursement from Medicare and Medicaid, they would need to increase the prices that we paid to them. I was flabbergasted and quietly enraged. I expressed my surprise and concern, and then told him that we were also expecting losses. With the expansion of access through Romneycare, we were seeing many patients whose cost of care exceeded our reimbursement. We were trying to find ways to be more efficient and lower the cost of care. We did not have the luxury that he enjoyed of covering expected losses by asking for more money from our practice partners. I left his office with a great sense of sadness and disappointment.
I had spent my entire clinical life at the Brigham from my first time on rounds with Dr. Louis Dexter when I was a first-year medical student, through my medical school rotation in medicine, and all my post-graduate training. In 2006, I was presented with a beautiful wooden rocker embossed with the Brigham logo in recognition of thirty-five years of service to the hospital. Now it was clear that I needed to initiate our exodus from the Brigham. It was a sad day for me. The Brigham had changed, and I had to accept that what I had once considered my home was now a somewhat hostile environment. The Brigham’s attention to its own best interest had just added to the pressure that faced Harvard Vanguard and Atrius in a time of uncertainty and economic peril.
l did not relish the idea, but I knew that we needed to move as much of our business as possible out of Brigham. The move would be a political and operational challenge against resistance from the Brigham which enjoyed tens of millions of dollars of income a year from us. Our hospital-based surgeons and specialists would also be unhappy because they loved their affiliation with the Brigham even though few of them were aware of the cost. There was a big job ahead.
I will continue the story next week.
Punxy Phil Didn’t See His Shadow
I was not surprised when Punxsutawney Phil, known to his closest friends as “Punxy,” predicted an early end to winter last Friday. Most of January and into last weekend the sky was overcast here in New Hampshire. In a way, it was like living in a dark cave. With no sun, there were no shadows. Based on the fact that I hadn’t seen my shadow since sometime in December, and the weatherman suggested that the gloom extended over much of the East Coast, I predicted that “Punxy Phil” would see leaden skies and not his shadow when he emerged from wherever he was in Gobbler’s Knob, Pennsylvania to make his prediction last Friday. I was resigned to the experience of an early end to winter. This winter has been a loss beginning with no snow at Christmas. It looks like we will remember it as just four weeks in January. A good indicator that our winter experience is another loss to global warming is the fact that Lake Winnipesaukee has not frozen. In part, happiness is a willingness to set aside what you want and embrace what you get. It’s Mick Jagger’s wisdom.
Ironically, having a short winter does not necessarily mean an early spring in New Hampshire because we have an intermediate season, mud season. With a long mud season, it could still be messy and gloomy for months. It may be well into late May or early June before we have a few brief weeks of spring. Another reality of the short winter is that those who boil maple sap to make syrup must decide when to put in their taps and start the process. The sap rises when the overnight temp is below freezing, and the mercury rises into the high thirties or even high forties during the day. That’s our weather now and into next week under bright skies with plenty of shadows.
I have a friend who lives to “sugar.” He and his wife have been at it for a few years and have invested tens of thousands of dollars and done uncountable hours of hard work to produce a few gallons a year of the wonderful sweet-smelling amber delight. I figure that his production costs, considering investment in the building and his equipment, the wood he burns, and the labor from tapping the trees to boiling the syrup, make the real cost per gallon to be in the hundreds of dollars. They give most of what they make away to friends. It seems like a religious experience for his whole family, including his grandchildren. He put in his taps this week and sent out an email to over ninety of his closest friends inviting anyone who might want to help to join him, and some will, and to say that he and his wife will be “boiling” and holding court in their “sugar shack” this weekend. We will drop by and sip mulled cider, enjoy conversations while sitting in a rocking chair beside boiling pans, inhaling the sweet vapors, coming off the boiling pans, and tasting some of the early product as the tradition continues with a very early start this year.
The picture of an evening view of my lake in today’s header was taken on January 9, just as we were entering the short month of real winter for this year. When we knew our grandson was going to be premature, his father who does the lettering of the header for this letter each week, asked if I could give him several pictures to do in advance so that he could focus on the baby when it was born. Even without the added beauty of a thick covering of snow, our relatively shallow lake was frozen. What appealed to me about the scene was the warm palate of colors that were reflected off the low-hanging clouds by the setting sun. The combination of various shades of pink and gray made a very pretty picture. Again, we have to take what we get. I hope that what you get this weekend is a lot of fun watching Taylor Swift as she continues her participation in the conspiracy to get Joe Biden reelected by attending the Super Bowl.
Be well,
Gene
