I am Victor Montori, Mayo Clinic Doctor and founder of Patient Revolution, AMA!

I recently learned about the struggles Lyme and ME/CFS patients face when seeking treatment in both socialized and privatized medical systems. (You can see a short video about how severe ME/CFS can be here: https://www.omf.ngo/2015/11/11/palo-alto-tv-news-covers-daviss-family-struggle-with-sever-mecfs/) These struggles include dismissal from doctors, disbelief, and prescribing treatments that do not help and sometimes harm. There is a huge need for more research about these diseases, better medical education, and better treatment. How can a non-profit like Patient Revolution help patients like these?

This is a hard question. Some medical conditions appear to not be worth the same level of access and care than others. Conditions that remain hard to explain with medical science, mental and behavioral health conditions that are hard to treat successfully or that require multidisciplinary teams or that are poorly reimbursed by payers. Patients who suffer these conditions not only have to cope with the challenges of living with them, of adapting to its symptoms and limitations and thriving as they pursue their life's hopes and dreams but they must also work hard, fight sometimes, to get the care they need. This is neither careful nor kind. It is often downright cruel.

The Patient Revolution does not focus on advancing the situation of people living with any specific disease or condition, but rather with creating a healthcare system that can respond humanly to the situations patients bring. As science advances, clinicians may find themselves in increasingly better position to respond effectively. In the meantime, they should care. The Patient Revolution should help make it more likely than not that the way healthcare is "delivered" and funded does not interfere with the ability of clinicians to care, and of the patients to see their situation advanced by care.

Hello Dr. Montori. I am a medical student interested in pursuing personalized medicine. What do you think about personalized medicines potential in the patient revolution?

Very challenging. The narrow definition of personalized medicine is one based on careful measures of bodily function, chemicals, bugs, proteins, or genes. These are efforts to reduce uncertainty. I think we need to recognize that the most likely outcome of these efforts will be the recognition of new uncertainties. I am afraid they will distract us from practicing the “other” personalized medicine which is to see each person in high definition, see their biology and biography, their content and context.

I definitely see how personalized medicine can lead to disparities in care. For example advanced personalized medicine care in oncology can take place more easily in big academic hospitals then in rural health care settings or clinics in low income areas. But i also think it can lead to higher patient involvement because the team based medicine approach requires more informed consent . But perhaps it can also lead to further doctor disempowerment as you mentioned. Where cancer was previously the domain of the oncologist or the surgeon, the team based medicine approach now involves bioethicists (which is good for the patient), pathologists, and others on the tumor board.

Sorry for this long winded statement/question, I am just very interested in personalized medicine and believe it's a paradigm that can completely revolutionize medicine and wanted your thoughts on this.

Also my dad trained at the Mayo Clinic and I find your guys biorepository fascinating. Is it true that you have tumor samples from the 1800s?

Thanks for your time.

The Mayo biobank has a long history indeed. Team based care is obviously superior in the care of patients with complex situations, particularly when the team includes patients and caregivers.

One thing I was very taken by in undergrad was Sherwin Nulands how we die where he talks about "The Riddle"

In it Dr. Nuland says that physicians have the tendency to dehumanize patients and view their disease as simply a Riddle to solve. Rather than focusing on patient needs, the doctor becomes obsessed with solving the riddle/ curing their disease because the inability to do so reflects poorly on the doctor. In their effort to do this, they lose sight of what is best for the patient by subjecting them to treatments that may not be in their best interest in order to solve this Riddle.

Do you see this in practice today still? The book was written in the 80s and I would like to think the medical practice has evolved past this mentality.

To some extent. The main point to me is that to cope with volume and incentives, many encounters are rushed, and we fail to see people in high definition, and to capture a sufficient understanding of their biology and their biography to be able to care.

Do you like Mayo?

Some disambiguation will be required.

Hi Victor, I think your ideas are fascinating and definitely will be part of our future!

It seems like your model requires more total physicians in the country and in each community, because it seems like it would require more time spent per patient, in many cases.

Is this accurate? If so, do you propose lowering some standards of medical school entrance/completion? More PAs? Does even a slight increase in MDs per capita translate to a slight decrease in wages?

Thank you!

Several layers here. Care takes time but we should think of this time not as simply the result of more “units of production” but of ways of caring that may require fewer encounter because we would work harder at improving health on one end and we would have unhurried encounters in which problems are more likely to be diagnosed more accurately and treatments make more sense to both the patient and the clinician. Those encounters should not be crowded out by business agendas, documentation and billing.

On the other hand healthcare should not be a place where people come to extract profits and greedy levels of income. This statement applies to corporate leaders, managers, and clinicians. So I would expect that salaries - yes salaries - for clinicians and others in healthcare including CEOs be moderate, return on investments reasonable not exorbitant and “breakthroughs” measured in human lives improved and saved and not in number of dollars pocketed.

Hey I watched your video, and unfortunately I am not able to buy your book, so I don't really know any strategies you propose. However, medical school generally costs >200k, and I was wondering if your project has any goals to lower the cost of medical schools?

I also am a bit confused on your perspective of documentation. It seems that you have noticed that more documentation is required in the medical field (at least for insurance purposes), so are you aiming to get rid of private insurance companies and presumably requiring less documentation and/or that doctors see fewer patients?

I don't see healthcare as an industry and the same applies to education. We need health professional education to be affordable and salaries to be reasonable so that we have the right people in the right position for the right reason. I think that the Patient Revolution will be successful when we change the polarity of healthcare. Right now, doctors and patients produce care that payers and investors evaluate for quality and decide to pay for. So the accountability goes in the same direction, doctors and patients are accountable to the payers. This is why payers talk of noncompliant patients, and doctors find these patients a risk to their ability to meet the demands of the boss. This is wrong! The boss should be the patient, all the value in care should not go to payers but to patients and all the accountability should be to each of our patients. When that happens we will know we have arrived. This is why i don't call for reform. I call for a revolution.

What's your favorite restaurant in Rochester?

Mango Thai

How do you feel about the Affordable care act? How do you feel about the fact that they are trying to repeal it? What improvements could be made to it? What will happen to the medical industry if it is repealed?

The affordable care act was one way to address the problem of how to pay for access to care for all Americans. There are other ways to achieve that goal. Whatever the approach, it should cover everyone who is here and be based on solidarity, not on greed. Legislators voted into office have the right to act on behalf of their constituents, so repeal - simply getting rid of a mechanism to provide access - is not a solution. A solution would require meeting requirements for access to timely, effective, safe, evidence-based, equitable, and patient-centered care and ensure this care is accessible and usable for all. The affordable care act got us closer, but not close enough. Efforts to repeal take us backward and seem careless. My concern is not with the industry, but with the ability of those most vulnerable to pursue their hopes and dreams unhindered by their health or by healthcare. The solution, therefore, cannot be limited to who pays (single payer vs. multiple payers) but what kind of care should every one of us expect when illness surprises us or gets in our way.

Dr. Montori, having read through most of the questions and your responses, I wonder where you see the legal profession in your revolution? I have heard for years about doctors having to charge exorbitant fees so they can cover their malpractice insurance. I can see where careful and kind care could elevate some of this but would appreciate your views.

Patients and clinicians who engage in meaningful conversations develop the kind of relationships on which they can fall back in case of unexpected or undesirable outcomes.

The challenge of course is when people cannot understand that undesirable consequences can come from healthcare (something healthcare contributes to by means of ads and press that highlight only the promise and wonders of care that resulted in awesome outcomes), or when crooks use white coats to do net harm on their way to personal power and fortune.

Defensive medicine, the practice of doing more or fewer tests or treatments than needed/wanted just because to avoid liability is not a practice that is careful or kind.

I am all for a model that doesnt cost a fortune to stay healthy and you say that patients have the power...but do they really? When something is wrong we're going to go to the same institutions, we just want to get better.

My question is this... Don't physicians actually have the power? What's to stop a group of physicians from going out and creating a better model of business? At the end of the day, doesn't this require everyone in medicine to have a pay cut to be successful?

I mean, you and I both know that writing a script for tamiflu shouldn't cost me $108, plus $300 in lab work, plus medication. Or if I hate flying and go see you for anti-anxiety rx, again... $108 for 3.5 minutes of "describe your fear here's your rx".

Hopefully my rambling makes sense.

I dont want groups of physicians to build better businesses. I want them to take care of patients without regard to their ability to pay. I don't want their energy to be spent on figuring out how best to profit, but rather how best to care. And I don't want them to figure this out on their own, but in dialogue with those who they intend to help.

Have any doctors that you know personally been opposed to Patient Revolution? If so, why?

The patient revolution requires turning away from industrial healthcare and toward careful and kind care. Most of my colleagues respond favorably, but feel disempowered, as if they had not control over their professional activities anymore. For patients this is surprising as they see many clinicians as powerful entities. Some are, and some are entrepreneurial profiting from the status quo, but many more are just trying to do what they love in very unfavorable contexts. This explains, in part, why 1 in 2 or 1 in 3 clinicians are reporting feelings of depersonalization and burnout including unable to feel empathy for their patients. This is the ultimate challenge: industrial healthcare is capable of hurting patients and the clinicians that are there to help patients.

Hi Victor -- two questions:

1. As someone outside of the sphere of healthcare, I agree that the industrialization is a problem (I'm in favor of having hospitals as a government service instead of private corporations). What are some things that myself and others could do to influence? Or do you think change is more on the clinician side of things?

2. Thoughts on changes to Single Payer and how that might impact things re: industrialization?

Excellent questions. I call this a Patient Revolution because I think patients (citizens really) will have to lead the change. Those who depend on the system as is will likely join later, when it feels a little safer to challenge it. So for not, i think citizens (patients, caregivers) and also students of the helping professions who still remember why they chose this route (to help others) will have to lead.

Things to do? We are still working it out. We think promoting conversations is very powerful. There are conversations that must take place at least at three levels. The first level is between clinicians and patients. There patients and caregivers can do more to make sure those conversations are more likely than not to be careful. The Patient Revolution organization website (patientrevolution.org) has some tools that you can use tomorrow, and some others that can be used to prepare for visits. We have done several training sessions in public libraries around the country where people have felt ready to ask difficult questions in their upcoming consultations. Similarly, we can promote deliberative democracy conversations between towns and their clinics and hospitals, and at the national level to advocate for models of care that are careful and kind. This would involve aspects of healthcare driven by greed such as the price of meds and access to affordable and careful and kind care for all.

In terms of models of care - the right answer depends on the country and the culture that each nation has. The key ingredient to the solution in my mind is solidarity. After that, the system needs to work out how to come up with an approach that advances access to all, is sustainable and is innovative. We should not trade these off against each other but optimize all three. Calling all innovators, but asking them to engage not on the basis of greed but of its antithesis: solidarity.

Do you like coffee or tea? How do you drink them, with creamer or what have you?

Black coffee.

Hi Victor,

Thanks for doing this!

Just wanted to say that you're doing great work. Keep it up!

I love your movement towards shared decision making. I just wish real shared decision making was more feasible in the real world for day-to-day in hospital decision rather than just the big life-or-death ones.

Any advice on how busy inpatient doctors can fit more time into their day to spend listening to patient stories?

Thanks!

Thank you - this is very kind of you. We have been working on making shared decision making - the kind of conversational dance between patients and clinicians in which they think through, feel through, and talk through the patient situation to try to fully understand what aspect of the patient situation requires action and what action the situation requires and figure out which action makes the most intellectual, emotional and practical sense. In our research group (http://shareddecisions.mayoclinic.org) we have developed a few interventions that try to make this happen. Some have taken place in the hospital, including the emergency department. Most are not for life-or-death decisions but include which diabetes medication to take, whether to go home or stay for full evaluation for a low-risk chest pain visit to the ED, or whether to take a statin.

Time is an important barrier for most activities that require care. The usual solutions are to give the impression of more time. But the truth is that care takes time, not just in minutes, but in terms of the depth of the time we spend together. And deep time requires as to chip away at the distractions, surprises, and competing obligations we all have, most of which have little to do with actual care and usually more to do with attending to the administrative and business needs of the hospital or practice. Nothing wrong with those aspects except that we should endeavor to make them subservient and background to the foregrounded work of care.

Have you, your department, or any other specific Dept within the Mayo Clinic worked on or with any aspect of the new revolutionary CRISPR technology? And what is your opinion on what will be or what looks to be the first publicly available treatment / application of said technology? Thank you so much for your time and even if all you want to do is offer your personal opinion on the crispr technology it would be more than appreciated.

Science is exciting. But I must stop there as this is beyond my expertise.

Have you seen Gordon Hayward's injury?

What is your opinion on the severity of it?

Yes, but I am not qualified to make a comment beyond what any fan who saw could make. I am always amazed at the resilient spirit and capacity to recover of athletes. Let's wish him the fastest and most complete recovery possible. It is a reminder that any of us can become injured or fall ill at any time, and that we should all, at all times feel that when that happens our community can cushion our fall and support our coping and recovery, regardless of our ability to pay. That is in part what I mean by Careful and Kind Care for all.

Never thought I'd see a doctor from the mayo clinic doing an AMA! Very exciting to see it on Reddit. Are you based in Rochester or one of the other campuses?

In Rochester for over two decades.

Do you like using mayonnaise with french fries, or ketchup?

What's your favorite type of mayonnaise?

Oh you combine both with Peruvian yellow pepper (ají)!!

Is this you in your office?

Hold the Mayo!!!

What will doctors do when all become robots and there are no humans left to treat? Will you take up hardware/software engineering?

Great question. How is my bot doing in answering these questions thus far? :-) Careful and kind care requires judgment, humor, ability to say the right thing and be silent when necessary. I don't see these capabilities present in our cybernetic colleagues anytime soon. But even if we delegate some tasks to technology, we should do it in a way that preserves and expands our ability to engage as humans in the joint dance of healing.

Hi Dr. Montori, As an aspiring doctor, I wanted to let you know how much I appreciate the work that you have put into improving the field of medicine. On a related note, how do you think doctors can help shape the future of health care?

Can? We must! But the Patient Revolution calls for us to do it together with the citizens, patients, caregivers, and students that have a stake in a healthcare that remains true to its goal of caring and that resists the corruption of its mission, that cannot quit caring.

What are your thoughts on Direct Primary Care?

Forms of care that do not fundamentally change the system for all will only meet the needs of a few leaving the system unchanged. I am supportive of pilots and experiments, but not so excited about forms of care that also leave behind the people underserved by the status quo. I like the idea of removing middle-men companies that profit from healthcare, but then we need to have a discussion of how to offer careful and kind care for all regardless of ability to pay.

I feel like it does fundamentally change the system because it shows that you can offer care atleast at the primary care level without involvement of insurance companies. The next logical step would be more government subsidizing this model so undeserved can have an opportunity to be involved.

These kinds of solutions need to be placed on the table and we should have conversations at the national and regional levels to determine what we want for ourselves. This is a key practice of the Patient Revolution.

In your professional opinion, and with you being at the Forefront of medical advancement that is the Mayo Clinic, how many years would you estimate it will be until we see the pancreatic cancer cure rate exceed the 20% mark?

I don’t know. Only to say that science does not only move smoothly but also in jumps, in paradigm shifts. So any predictions will probably be wrong.

Hi Dr.!

I've read that you are an endocrinologist by training. Do your many wonderful activities prevent you from doing much clinical work? Does your work outside of the clinic affect the way that you see patients and vice versa?

Thanks so much for doing this.

I ground my research and advocacy activities in patient care, which I do by contributing to the care of patients with diabetes.

Thank you for responding! Sounds like an amazing opportunity to integrate health care, basic sciences, and medicine.

My research is how do we know what we know, how do we help patients and clinicians make decisions together, and how do we make healthcare fit better in the lives of people. Here is our research group site: http://www.mayo.edu/research/labs/knowledge-evaluation-research-unit/overview

Is it possible to merge the best of capitalist-based medicine (financial incentives for innovation, success rates/performance, patient satisfaction, etc.) and the best of a "careful and kind" system? We've all heard the argument that socialized medicine invites bureaucracy and doesn't motivate personal achievement.

Can the American cultural bias against non-industrialized medicine be overcome?

We should have a broader dialogue on this topic. I think we have wrapped magical thinking around financial incentives and I have found that they deplete the enormous professional reserve that clinicians and researchers have when they are motivated by mission. I don’t see the alternative here to switch the opaque and unaccountable administrative apparatus of corporations to civil servants. I think we can do better than industrial healthcare.

For 8 years now I've had a persistent feeling of tightness and pressure in my chest that exists 100% of the time. Like I can always feel my heart beating, or like my chest is going to explode. It's frustrating and annoying and sometimes downright scary. Every doctor and specialist I've been too though says it's nothing because they can't seem to find anything wrong with me, even after countless stress tests, blood tests, enzyme tests, echo cardiograms, X-rays, and god knows what else.......

What the hell should I do? What's the next step?

I don't know. Sounds like a tough situation. Perhaps someone with a broad perspective (like an internist) should take a fresh look at your problem. Coping with persistent symptoms is really hard, adapting to them and thriving despite them a tough trick.

Are you attempting to sort out a union, as well?

Not sure I follow

A doctor's labour union. For example https://www.hcsa.com/

I am much more interested in a patient-led movement, in advocating for careful and kind care.

What do you think of "alternative medicine", in particular Chiropractic?

I find that many practices that are not supported by science can be easily ignored by traditional medicine. But there is one aspect that is often better practiced “there”: noticing the person. I would like to see a practice of care that is BOTH strongly grounded in science and that attends to the care of THIS patient, seen in high definition.

Hi Victor, thanks for the AMA.

What's the best way we can become involved in this program? And is there room for clinicians of physical therapy, such as myself?

There is room for citizens and professionals anywhere. One step forward is to visit http://patientrevolution.org

That site has a few tools and activities we can do locally. We are also working on developing chapters for students of helping professions. These are early days and all are welcome to push forward.

The book, Why We Revolt, does not include solutions, just language that would help us think (and hopefully act) differently about care: we are talking about elegant visits, timelessness in care, love, and solidarity. Join us and lets learn together!

Hi Dr. Montori,

I have worked in the healthcare industry for over a decade and absolutely agree with your point of view on aggressively patient-centered care (and, as you certainly know, patient centered care models improve outcomes, reduce cost, and increase pt and provider satisfaction).

One of the biggest difficulties, IMO, that our industry faces is that we have, especially on the facility side, vast overresourcing and fixed cost structure. Ultimately, most of the longitudinal models that have a strong PCP & patient focus result in decreased utilization of inpatient, ER, and specialist services (again, paired with improved outcomes and pt/provider satisfaction). How do you think we, as an industry, confront the difficult reality that overtreatment and avoidable treatment are significant sources of funding for most hospital systems? Also, in your opinion, how do we best resolve the clear overcapacity issues in some service lines (e.g. availability of advanced imaging - city of Dallas has more MRI machines than the entire country of canada).

There are clearly other inefficiencies in our healthcare delivery system (admin costs, claims processing, PLI, etc) but to me, those are outside the scope of the clinical delivery system and can be resolved through other routes (e.g., many health systems have delegated UM and no longer have to get approval from the insurance company for LOS or admits, some claims-related items are slowly starting to shift in this direction, etc).

In the book i talk about a prediction i was asked to make by Minnesota Medicine for year 2033. My prediction included a successful patient revolution in which the mega facilities of healthcare end up becoming cathedrals of care as they become community centers for the arts, recreation, and education...real sources of health.

Another "fixed" cost of healthcare comes from competition as facilities not only have to duplicate the same services, but also engage in an arms race for technologies. The result may be better access to these, but also an incentive to make everyone of us a patient candidate for these technologies, and for costs to go up as the fixed costs go up, reimbursement goes down, and investors demand more return from their investment, and advertisement budgets soar to bring more patients through the door. All of this is time, money, activity, and energy drawn away from care. We need something better than industrial healthcare.

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Sorry. Sounds like a really difficult situation.

Do you think medicinal and or recreational marijuana will be legal across the country with time? Or do you think the federal government will crack down on its research and availability due to its ability to replace other medicines costing other companies millions?

I don’t know. I think medicinal anything should be considered like any other medicines with the same standards of evidence. It is important that we establish that any intervention has benefit, estimate and describe carefully what those benefits are and also characterize the potential harms. In this way, patients and clinicians can consider this option and other similarly studied options to determine which one makes the most sense in each patient’s situation. And for this to work, there should be no corruption of the research evidence introduced by which questions get asked and what results get published as determined by the interest of the sponsors, not of patients.

What will it take for the United States to finally join the rest of the developed world with a nationalized health care system?

Solnit says that hope arises from uncertainty, and within that uncertain future lie the outcomes that we can cause through our own action. We can be pessimists, or optimists, or we can act. Let's start a patient revolution!

Hi Dr. Montori, thank you for your time.

I’m a current medical student who recently returned from Peru where I helped screen women for cervical cancer and distribute HPV vaccines. During the trip, there were many healthcare strikes that left hospitals closed or understaffed, which led to patients not showing up for some of our campaigns. This may have led to women who required screening to be missed. So two questions:

Would something like the Patient Revolution be applicable to countries like Peru?

Also, while over there, the food was incredible so what Peruvian dish do you miss/enjoy the most?

Ceviche of course. Chupe de camarones. Arroz con pato. Our fusion cuisine with Japanese and Chinese food. Anticuchos. Flan.

In the book Why We Revolt I draw a lot from my growing up and becoming a doctor in Lima to propose what we could do to fight the corruption of healthcare. So, SI!!!

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Not my area of expertise, and I answered a bit above about the role of interventions in scientific medicine. And the need to determine with each patient which of the available researched options best makes sense as a tactic to address the aspect of the patient situation that requires action.