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Posts tagged ‘Dr. Victor Montori’

Why We Revolt: An Interview with Dr. Victor Montori

The founder of the Patient Revolution is Dr. Victor Montori, a leader in the Knowledge and Evaluation Research Unit at Mayo Clinic and an endocrinologist at Mayo. Dr. Montori is interested in how knowledge is produced, disseminated and taken up in practice — and how this leads to optimal health care delivery and patient outcomes.  His book, Why We Revolt, has just been published, and he’s here today to talk about the how, why, and necessity of a patient revolution.

Disclosure:  For the last few months, I’ve been proudly involved as a board member for The Patient Revolution and have contributed to some of their editorial endeavors, so I’m invested in this organization.  But not just because it’s something to do.  I’m invested, invigorated, and inspired by The Patient Revolution because the people involved are making a difference now instead of kicking the can of careful and kind care down the road.

Kerri: Victor, last time we spoke here on SixUntilMe, we talked about the evolution towards a patient revolution. Well now the Revolution has arrived. Can you tell me a little bit about the inception of the Patient Revolution?

VM: The Patient Revolution is the coincidence of two lines of thinking and doing. On the one hand, the Warburton Family Foundation whose focus is to promote better care through better patient participation in care and the KER Unit, a Mayo Clinic research group that has been working for more than a decade in advancing the science of patient-centered care. As the ideas came together, it became evident that a new nonprofit, The Patient Revolution, was necessary to advance this mission. We advocate for nonviolent action, one focused on conversations at the clinical, regional and national level to turn away from industrial healthcare and toward careful and kind care for all.

Kerri: And in the last few weeks, you’ve released your book, Why We Revolt. Why do we revolt, and what is the book about?

VM: I had to write this book now. I believe that our healthcare system has corrupted its fundamental mission and has stopped caring. This book argues that greed is a basic reason for why people sometimes get care by accident, other times the are treated with unintentional cruelty, this because of care for people like you, not care for you, you being missed. We need to turn away from such industrial healthcare and toward care that is timeless and elegant, that notices each person in high definition and treats them as one of our own by clinicians working in a system based on love and solidarity. This is why we revolt. This turning away cannot result from a bunch of incremental reforms; it needs a revolution.

Kerri: What was the writing process like?

VM: Each chapter has its own pain, its own pleasure, its own reason for being. My biggest fear in writing this book is that its content would be ridiculous, and among the chapters the two most at-risk are Love and Timelessness. To speak of love in healthcare seems so removed from the day-to-day experience of industrial healthcare and the technical orientation of much of its workforce, everyone more or less convinced that they show up to work to do a job. Yet, we must reclaim love between fellow humans as a fundamental part of the reason and the way we care for and about each other. Time stands in the way of almost any good idea about care. Lack of time is often cited as a barrier. Yet, I don’t know why we cannot imagine care that is timeless, not that each visit would have infinite duration, but where there is enough time for it to grow thick, to fly because it does not move, because we are caring or being cared.

Kerri: What section or chapter are you most proud of … or perhaps most terrified of?

VM: I am getting notes from patients, stories they want to share in which they use the words of the book. This is how i want people to feel – ready to share their stories, with stories and conversations the nonviolent tactics of this revolution. Some have re-experienced pain as the book reflected their experiences of “care” and that has given me pain. But others who I have never met have felt heard, seen. From their notes I also have learned that people have found common ground with the values and feelings I disclose in these pages. It is as if readers are forming a community with this writer and with each other. Well, this are the seminal moments of what I would hope will be an unstoppable movement for careful and kind care for all. Each of these responses have made me feel enormous gratitude, moved by their love, and overwhelming responsibility to take this further until we can surprise ourselves with our success.

Kerri: Who should be reading Why We Revolt? And why?

VM: I dedicated the book to my sons, and they are teenagers. My hope is that by the time we are finished they can take patient care for granted, and regard industrial healthcare as an aberration, a historical accident of greed. I think clinicians and patients, caregivers and policymakers, citizens and managers, but mostly young people, not yet bit by the cynicism virus, and dedicated to work for a better world, perhaps students of the helping professions. I hope this book will give them a vocabulary for the fight, and elicit the stories that make all the difference.

Thank you, Dr. Montori, for helping pave the way for conversations about careful and kind care.  For more about the Patient Revolution, visit their website.  For more about Victor’s book, you can get an overview here and buy your own copy on Amazon.  

And if you’d like to share your healthcare experience, or your perspectives as a patient or clinician, visit the Patient Revolution website and get involved.  

Diabetes Research: My Evolution Toward a Patient Revolution.

I like Dr. Victor MontoriHe’s a Mayo Clinic diabetes doctor and researcher who is working for a patient revolution – versus healthcare corruption – and for treatments that fit patients properly.  He and I are part of a PCORI team looking at user-centered design and the development of patient decision aids, and I had the chance to meet with Dr. Montori in person at the PCORI meeting in DC last month. 

What I like most about Dr. Montori is that he doesn’t say what people want to hear, but he says what he feels needs to be heard.  I respect the lack of bowing to the status quo, and the desire to improve the system.  Today, for Diabetes Month [insert blue circle confetti here], Dr. Montori has graciously offered to share his perspectives on why the patient revolution is important, and how we are all a part of it.

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Diabetes research: my evolution toward a patient revolution

by Victor M. Montori, MD, KER Unit, Mayo Clinic

I can only speak of the picture I have had a chance to see directly since I started my career as an endocrinologist in 2000. I am referring to my perspective about diabetes. I worry my perspective is narrow and skewed, but it is what it is. So here it is, offered humbly in case it helps.

My training as endocrinologist focused on conducting research with my mentor, Dr. Steven A. Smith, research he had oriented toward discovering better ways of caring for diabetes in the community. He taught me about the different ways in which clinicians and communities could support people with diabetes, and how, in health care, specialists and generalists needed to work together. He saw the role of endocrinologists more as architects, designers of systems of care, rather than as artisans, designers of care programs for individual patients. He made me aware of the challenges poorly designed health care adds to the already complicated lives of patients. And he made me aware of the complicated lives of patients and how terrible clinicians would improve their standing by either directly firing patients or by chastising the noncompliant ones who would then leave the practice. These clinicians would then boast that they did not have noncompliant patients and had no trouble keeping them all under 7%. This to me exemplifies the corruption of healthcare.

I think there is a direct link between those early lessons and those I have learned as a researcher and clinician focused on diabetes in the last decade. My band of sisters and brothers, the Knowledge and Evaluation Research Unit or KER UNIT, works closely with a patient advisory group comprised of patients with diabetes who have met monthly since November 2004 to support researchers like us in our work. Firmly keeping us patient-centered has been their key contribution. The KER UNIT was formed on the basis on three principles: generosity, integrity, and patient-centeredness. These are lived principles and we constantly refer back to them to make tough decisions. They have served us well. As a result, for example, we take no funding from for profit corporations, funding that could stand as an alternative explanation – to scientific judgment – for how we have summarized evidence or presented it to patients and clinicians.

We focused our first efforts as a unit to understand how we know what we know, as this translated into what we told patients to do. In doing so we found that much of our dogma is based on unreliable evidence, that much of that evidence fails to tell us if patients will be better off with our interventions, and that it focuses on a mythical molecule, the HbA1c. HbA1c is the outcome of choice for all clinical trials, the metric of quality for most quality improvement projects, and the only grade on the gradebook on the desk of the endocrinologist-as-principal. And when we asked patients, HbA1c was as important as death as an outcome for diabetes research! The manipulation of patients and clinicians was complete.

With my colleagues at the KER UNIT, we then turned our attention to shared decision making and developed the first tool to help patients and clinicians decide together if the patient should take a statin to prevent heart attacks or which diabetes drug to choose. Those tools, found on trials to be effective, have remained freely available and are used at least 10,000 times per month, around the world. By bringing transparency to the consultation, patients and clinicians could find what is best for each patient, based on what is possible and effective and on what matters to patients.

In 2009, we started to develop an approach that seeks to advance the goals of patients while minimizing the healthcare footprint on their lives. This work involves recognizing the work of being patient, understanding the burden of treatment, and learning how healthcare could be delivered in a way that is careful with what it demands and kind with the precious capacity patients have to do this work and to do the more meaningful work of addressing life’s urgent demands while pursuing their hopes and dreams. We call this minimally disruptive medicine, and we believe it is going to transform medical care, particularly for patients living with chronic conditions like diabetes.

This is particularly important for patients with chronic conditions like type 1 diabetes. Patients with diabetes study, work, and grow families, develop careers and volunteer, plan schemes and pursue challenges. Diabetes sometimes gets in the way, but care of of diabetes – organized often to satisfy economic and business urgencies, almost always gets in the way. Think of the difficulties of getting stuff paid, approved, coordinated, or delivered, of getting medications refilled, getting records shared with other clinicians and with patients. Paper work, time work, worry work. Technologies are helping reduce the healthcare footprint of diabetes in people’s lives, just as an increase awareness of the human cost of hypoglycemia is helping nuance the care of patients with diabetes in hospitals and clinics. Hopefully the endocrinologist-as-principal judging the patient only on the basis of HbA1c levels is an endangered species we will not save. Only competent and compassionate medical partners and clinics, able to be careful and kind, need apply. Our team is quantifying the work of being a patient with diabetes and bringing to consultations tools to uncover why patients may struggle to achieve their own goals.

Our latest pursuit recognizes the limitations of only innovating within healthcare. We think we need to fundamentally change medicine and re-orient healthcare toward the care of patients. To achieve that we need to change the way health care is organized, paid for, delivered, and rewarded. Clinicians, my colleagues, recognize the need to recover medical care of the patient from the industrialization of health care, but they declare their impotence. Thus, I strongly believe it is time for a patient revolution.

Perhaps the next big civil rights movement, the patient revolution will claim that people cannot be left out, priced out, of the care they need. They will claim that people cannot be exposed to less healthcare than they need, or more healthcare than they want, and that health care must fit their context. They will claim that healthcare cannot start and stop at the hospital door, but rather should be complemented by policies that improve the health of the community and reduce the impact of factors that promote chronic illness such as pollution, violence, poverty, inequality, inequity, loneliness, homelessness, and poor nutrition. Through individual advocacy (not for a single disease or for a loved one alone) and collective action (not the walk, the run, the ride, or the bucket) we can bring change to make healthcare more about care for and about the patient. I invite you to mobilize your friends and family and to join the patient revolution.

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Thanks, Dr. Montori, for sharing your thoughts.  As patients and caregivers touched by diabetes, how can we be part of the revolution?  Patient voices and perspectives are not new.  We are the revolution.

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