MDM BLOG

Reflections on MDM

Designing the ecosystem to make the work easier

by Victor Montori

While in London, I had the chance of reconnecting with J. Paul Neely, a brilliant designer with whom I had the pleasure of working when he was at Mayo as part of the SPARC Innovation Program.  He is a Masters student at the Royal College of Art and he thought his peers would enjoy learning about our work.  After I presented my talk, a team that is intent on designing out medical error showed their efforts to redesign the hospital bays to ensure health professionals wash their hands.

After much discussion, it become clear that both sets of projects were not about designing a solution, or a system of solutions, but rather they were about redesigning the ecosystem in which the work occurs — the work of being a chronically ill patient or of being a health professional —  and engineering that ecosystem to make that work easier, minimally disruptive.  Ohh!! Love it when ideas from different backgrounds, disciplines and foci have a chance to collide and reproduce!  Thanks J. Paul!

Papers and presentations, Reference material

Normalization Process Theory and minimally disruptive medicine

by Victor Montori

I have just spent a glorious week with colleagues in the UK who are all pioneers in formulating a sociological theory of work called Normalization Process Theory.  We were brought together by the very generous Carl May, the convener of this group and key intellect along with Tracy Finch, Tim Rapley, and several others behind NPT — all “eminent, esteemed, and lovely”.

I was given the opportunity to share some notes about fitting healthcare to the patient using shared decision making and minimally disruptive medicine and how we were using NPT to support this work.  My presentation is here:

During these proceedings, the official website (which is curated by the developers as opposed to the otherwise accurate wikipedia page version) for NPT was launched, including the very useful NPT Toolkit, currently in beta.

The NPT toolkit boils down the theory into 16 questions.  The point of working thru these questions is not to reach an answer, but to think through — while addressing these questions — the process by which an intervention, a study, a treatment will become implemented, enacted, embedded, i.e., normalized, into existing routines.  The questions are challenging and invite thoughtful discussion.  I want to start using these with patients to uncover the work of adhering to complex medical regimens.

The developers are anxiously waiting for users to provide feedback and promise to be responsive.  Since this is the theory underpinning minimally disruptive medicine, my enthusiasm for a toolkit that will make it more accessible to practical people is very high.

The other attractive feature of the toolkit is the resulting report.  While this gives a sense of “destination” — when I say above that the “journey” is where the value lies, the plots suggest the notion of footprint that I have found so critical to understand healthcare in the lives of patients.

Go explore the site and post comments there and here.

Reflections on MDM, Views from the frontline of care

Challenging my colleagues

By Victor Montori

I am often on the road discussing minimally disruptive medicine with colleagues elsewhere. For some reason I never hear disagreement with the basic statements of concern (we are responsible for some of the non adherence by virtue of our endless and uncoordinated demand for more work on chronically ill patients with multiple comorbidities). When I suggest something needs to be done about this, e.g., reject disease specific quality and performance measures, work for integrated care around patient needs, assess and reduce treatment burden, I get a sense of impotence, of inability to create change, to truly advocate for the patients’ interests. Why do you think this is the case?

When patients opt out of their medical care, we think it is because they may be ignorant about the implications of disease and the effects of treatment.  This intentional noncompliance sounds to me as a target for improved communication and education.  Even shared decision making.  If patients make informed choices about what to do and what not to do, that is not noncompliance.  That is informed patient choice.  An exercise of people’s values and preferences with full understanding of the opportunity costs of taking and not taking action in their specific context. This is sometimes confused, but some folks understand it – e.g. this article in LA Times.  The focus of my attention, however, is poor treatment fidelity – poor follow-through with an agreed upon plan of action.

Poor treatment fidelity can be caused by our transferring to patients the demands for optimal care we feel as part of misguided performance improvement campaigns, by poor care coordination, and by blindness to the burden of treatment and to the (limited or shrinking) capacity that patients and family have available or able to muster to implement treatments.  It is this reality that is within our reach and, as I indicated in the first paragraph, it is something about which I find professionals feeling impotent.  Why?

My colleague Barbara Koenig pointed me to this article by the late historian Tony Judt commenting on the work of Czeslaw Milosz and specifically on The Captive Mind.  The key phrase Judt offered that seems pertinent to this discussion is: “Above all, the thrall in which an ideology holds a people is best measured by their collective inability to imagine alternatives.”  Is the impotence I have observed the result of this inability to imagine alternatives?  Can minimally disruptive medicine offer these?

Papers and presentations, Reference material

Minimally disruptive medicine talk on YouTube

The great folks at the Mayo Center for Innovation have published last year Transform symposium talks on youtube.  These include the first public presentation about Minimally Disruptive Medicine and Maggie Breslin’s classic on the power of conversations in healthcare.

What has happened in the last year?  Our international research team continues to work hard to define the concept of treatment burden for patients and caregivers and make it measurable, we are looking into clinical visits video recordings to explore the nature of these conversations, and we are working with partners to further consider these goals in initiatives such as the patient-centered medical home.  Lots to do!

MDM in practice, Reflections on MDM

How negative studies can help with minimally disruptive medicine?

By Victor M. Montori, MD, MSc

Harlan Krumholz is a healthcare hero.  He has actively campaigned against the corruption of healthcare and has received attacks aimed at him personally and professionally.  He has formed a cadre of rigorous researchers in cardiovascular outcomes research who meet regularly. He is now the editor of the leading journal in this space.   He is an independent thinker, a productive researchers, and a supportive and loyal mentor to his peers and students.  The opportunity to express my admiration comes from the publication of Harlan’s op-ed in the Washington Post that directly relates to the topic of this blog.

For minimally disruptive medicine to take place, clinicians and patients need credible research evidence about what works, how much interventions are able to accomplish in terms of patient-important goals and outcomes, and what are the harms and costs to pay to get those benefits.  Both positive and negative trials (the latter referring to those who find conclusions of no difference between a new intervention and no intervention, placebo, or the standard of care) are essential to this mission.  However, negative trials are less likely to be published which furthers the notion that most of medicine’s treatments on average are effective.

Harlan’s Op-Ed makes a strong case for supporting, publishing, and celebrating negative trials.  And this is important for minimally disruptive medicine and to answer the question that patients ask: “is there something that we can stop doing?”  For many of my patients with diabetes taking pills this means that they can stop checking their blood sugars using finger sticks.  We know this from well conducted research showing marginal, if any, benefit.

Clinicians and patients in the US are enthusiastic tinkerers and are in the lookout for exciting new opportunities to improve their health.  As a result they are often attracted to new potentially effective therapies.  Publication of only positive trials contributes to sell those therapies; hiding of negative trials distorts the record, misleads clinicians and patients, and corrupts healthcare.

Thanks Harlan for raising this issue, and for all you do for patients.

MDM in practice, Reflections on MDM, Views from the frontline of care

Simplifying may not always be simple

A patient overwhelmed with the complexities of her program should prompt a simplification of her treatment. But what happens when simplifying, i.e. changing, has a new and steep learning curve and disrupts established routines? How should minimally disruptive medicine (MDM) deal with this problem.

A patient comes to see her diabetes doctor every 3 months at great burden to her (get a ride, company, time). When the MDM clinician seeks simplification of the follow up schedule with less intense schedule the patient feels abandoned. What is the role of e-health in this setting?

At a meeting of entrepreneurs in Minneapolis, MN I challenged them to consider patient disruption as a target for innovation and non disruption as a design criterion for new technologies for patients with chronic disease.

And the challenges of this new approach keep piling up…

Reflections on MDM

The colonizing clinician – another perspective about the burden of treatment

It seems to me (Hannah Fields, medical student, Mayo Medical School) that if medicine can be “minimally disruptive”, there must also be a practice of “maximally disruptive medicine.” This is not to say that the doctor means to overly burden a patient with the tasks of self-care. The physician merely fails to consider the effects of the treatment on the daily life of a patient.

The workload of a patient’s participation in self-care or treatment on his or her daily life has become known in our group as the Burden of Treatment (BoT). It is important to note that this does NOT include the ways in which the disease itself effects life, but is restricted to the ways in which the patient’s investment of time, money, effort, and social and other resources in treatment affects the patient.

I’d like to clarify and put this into perspective with my previous musings on “What is fit?”. Recall that a treatment that fits is one which meets the doctor and patient’s shared priorities and goals for treatment outcomes, and does not exceed the patient’s capacity to cope. In order to make a treatment to a patient, a healthcare provider can either attempt to increase the patient’s capacity in order to bear the burden of treatment, or decrease the burden to not exceed the patient’s capacity.

I recently had the opportunity to discuss these ideas on treatment fit, BoT, and MDM with Dr. Michael Seltzer, a medical anthropologist from Oslo, Norway. Dr. Seltzer has studied the effects on patients of medical and psychological treatment from an anthropological perspective and he gave me a paper (see citation) regarding the concept of “colonizer” family therapists. Such colonizer therapists can be viewed as an parable for other health care providers working to avoid “maximally disruptive medicine”, and are examples of how even well-intentioned professional helpers can give treatment that grossly does not fit.

Therapy and colonialism may seem to be highly contradictory activities. As Rober and Seltzer explain, “Indeed, colonialism refers to a complex of practices for oppressing and exploiting peoples, while therapy, on the other hand, refers to a set of ideas and practices aimed at helping them” (124). However, as a professional helper, it is possible that attempts to help alleviate the burdens and detriments of disease can feel overwhelming and even oppressive to a patient. Anyone who has attempted to comply with a complex treatment regimen, especially one that lasts indefinitely for a chronic condition, may feel that health care providers and their treatment consume significant personal, financial, and social resources. One patient described this phenomenon of BoT to me as “a hijacking of my life, my time, my activities, and my priorities from day to day”, echoing the “colonial” exploitation described by Rober and Seltzer. Rober and Seltzer also reference the argument of Aime Cesaire that “those conquered and exploited by imperial powers also suffer devastating psychological damage. Colonialism, he argued, not only stripped colonized peoples of their natural resources but, perhaps more destructively, robbed them of confidence in their own strengths and resources.” (124). In this way, the burden experienced by a patient whose capacity is overwhelmed or exceeded by treatment is confounded by decreased perceived self-efficacy or confidence in their capacity to cope, which in turn further decreases his or her capacity to cope with treatment. If this cycle of overburdening and decreasing capacity continues, a patient is sure to encounter not only unsatisfactory health outcomes but consequences in other aspects of life due to the burden of treatment.

Rober and Seltzer defined four characteristics of the colonizing family therapist (please see also the table below): “the therapist becoming overly responsible for the family, too much focus on change in the family, disrespect for the family’s pace, and most importantly, neglect of the resources that the family already possesses that could be used to make a positive change .” (125) These features correspond to aspects of disruptive medical practice: the physician assumes too much responsibility for decision making and/or care of the patient (instead of sharing such tasks with the patient), a focus on clinical goals that strays from patient goals and/or priorities, failure to evaluate, disregard for, or misunderstanding of patient’s capacity to cope with treatment, and neglect for the patient’s resources or assets for coping with the burden of treatment.

The Colonizing Family Therapist The Colonizing Healthcare Provider
Becomes overly responsible for the family Assumes too much responsibility for decision making and/or care of the patient (instead of sharing these to the extent that the patient’s ability)
Focuses too strongly on change Focuses too strongly on treatment goals that stray from the patient’s own goals or priorities
Disrespects the family Fails to evaluate or disregards or misunderstands the patient’s preferences or capacity
Neglects the family’s own resources Neglects the patient’s own resources or assets that can be used to cope with BoT

A conscientious clinician can avoid the “colonizer position” using minimally disruptive medicine as an approach to work with patients and implement a treatment that fits. In addition to emphasizing the importance of finding treatments that are effective within each patient’s goals and contexts, the Rober and Seltzer paper raises an important part about the patient’s capacity. Instead of looking only for the ways in which a patient falls short of being able to cope with a treatment burden, health care providers should find ways in which a patient’s strengths can support treatment with the aim of integrating the work of treatment into “normal” life. This idea of strengths-based design is neither new nor unique to MDM, and I think that this concept itself may yield interesting and valuable lessons on making care really fit. I have some further reading and investigating to do, but I look forward to discussing these issues with you in future posts.

Rober, P and Seltzer M. 2010. Avoiding colonizer positions in the therapy room: some ideas about the challenges of dealing with the dialectic misery and resources of families. J. Family Process: 49:1; 123-37.

Reference material, Reflections on MDM

What is fit? by Hannah Fields, Mayo Medical School student

Hannah Fields is a bright medical student working with our group at Mayo Clinic.  She has been thinking about MDM and wrote the following essay:

What is Fit?

As a new researcher in the area of minimally disruptive medicine, I have started to think quite a bit about what fit and minimally disruptive medicine really are. I have come to a (relatively) simple definition: fit is patients and doctors working and making decisions together to develop a treatment plan that meets the patient and doctor’s goal for managing disease while still being manageable for the patient.

The single most important reason why it is important for a treatment to fit is that patients have the single largest stake in the treatment. It is the patient who will have to schedule the visits, take the medication, monitor his or her health, adjust his or her lifestyle, and deal with the effects of either the disease, the treatment, or both. These burdens of disease and burden of treatment must be managed using the resources of the patient and often his or her social community. The patient must have the capacity to cope with the demands of a treatment regimen in order for the treatment to help achieve a health goal. A good treatment fit with minimized treatment (and disease) burden are especially important for patients with at least one chronic disease, as the patient’s commitment to treatment can last a lifetime and the cumulative burden of disease and treatment can become very large.

The problem with many prescribed treatments is that the treatment must be used as directed in order to achieve the desired health outcome. Patient adherence, therefore, can be a major determining factor in whether a treatment will be able to achieve the doctor and patient’s goal. In addition to the decrease in benefit from treatment when adherence is low, additional side effects, complications, and doctor visits can result. Such consequences, which can result when disease management is poor, create an additional burden of disease and/or treatment for the patient, the community, and for society. Since adherence to treatments and the ability to cope with treatment burden can have a large effect on treatment outcomes, prescribed treatments should be chosen to fit a patient and to be minimally disruptive (or minimally burdensome) in order to allow for the best chance of reaching a health goal.

For a visual image of the way that I picture fit and minimally disruptive medicine, picture Venn diagram of three overlapping circles.

Each circle represents an important factor in choosing and implementing a treatment: on circle is the domain of the patient’s goals, on circle is the domain of the doctor’s goals, and one circle is the capacity of the patient to cope with or adhere to a treatment. At the intersection of all three domains is treatment that fits, and the practice of minimally disruptive medicine. In a perfect world, the doctor and patient would agree on all goals for treatment and disease management, and all of the possible treatments that would accomplish this goal would be within the capacity of the patient. In the real world, we must use different tools and ways of practicing medicine to determine the shared goal with as much agreement as possible between doctor and patient, and to find treatments that are within the capacity of the patient and can be accomplished using the patient’s available resources. This would mean working in the “zone” of treatment fit and minimally disruptive medicine, and allow the greatest chance of successfully achieving health goals.

Many different interventions have been developed which aim at improving health with the primary goal of increasing patient adherence and thus the efficacy of available treatment options. While many practices, including evidence-based and patient-centered medicine, include the aim to bring the doctor and patient to an agreed upon and effective treatment, specific tools have been developed to aid in setting these goals and prioritizing the characteristics of available treatments for the patient. These attributes include the efficacy of the treatment, various burdens of administration or monitoring of the treatment, side effects, cost in time, money, and resources, and access. Tools for helping to fit a treatment include decision aides, which give doctor and patient and systematic and inclusive approach.

Countless other interventions to improve treatment adherence address the issue of capacity by either increasing the patient’s resources available to use toward treatment (i.e. providing childcare, accompaniment to appointments, transportation, reminders) or by decreasing the burden of treatment to adjust for the patient’s capacity (i.e. scheduling fewer appointments, reducing costs, etc.) In some cases, treatment or outcome goals are adjusted so that the treatment necessary to accomplish them is within the capacity of the patient. Decisions to modify treatment or outcome goals must also take into account the possibility that while treatment burden may decrease as a result, the burden of disease increase in the short- or long-term as a result.

The practice and pursuit of finding a treatment that fits by shifting the doctor and patient goals as well as by addressing the patient’s capacity to cope with or adhere to a treatment is the practice of minimally disruptive medicine.  In minimally disruptive medicine, the most important objective should be to treat or manage disease so that the patient has the best chance of leading the life that he or she wants with minimal disruption due to disease or treatment. I recently began the long journey of medical school because I want to spend my life helping others to address health problems in order to use time an energy towards other priorities, and in minimally disruptive medicine, I hope to find a fit.

— Hannah Fields, Mayo Medical School

Reflections on MDM

Innovation to deal with treatment burden – the 2010 DiabetesMine Design challenge

Amy Tenderich from DiabetesMine is calling again for innovative ideas to help patients with diabetes.  The video compellingly describes the kinds of ideas patients are looking for, in their own words.  The keyword: simplify and reduce treatment burden.

The role of innovation in reducing treatment burden seems central to the quest for minimally disruptive medicine.   This year, the competition has built in, for the winners, opportunities to really take concepts to market thru key partnerships like Ideo.  Let’s hope that opportunities like this continue to contribute to effective patient-centered solutions to reduce treatment burden.  Healthcare policymakers and professionals should do their part to change goals, treatment and monitoring schedules, and visits to assist further with that goal.  Maybe we need another competition to spark an innovation in healthcare delivery aimed at reducing treatment burden.