We are pleased to present our 2017 Annual Report. A special thank you to Keven Shaw for putting it together.
Hearing the words from a doctor that ’You need a kidney because your kidney function has declined significantly’ is not what you ever want to hear in reference to you or a family member. In early 2014, our family was confronted with this exact situation. We heard those words in reference to my mother. Having a fistula implanted, determining the best fluid intake, dietary restrictions and pending dialysis was our new normal. So, when my mother was diagnosed with end stage kidney disease and put on the transplant list, there was no question I would immediately begin the process to become a potential living donor. There was no hesitation that I would subject myself to the blood work and testing. I never realized that the process could take months… and in my case years to become “cleared” for donation. In August 2014, I made the three hour drive to the large academic medical center to undertake my two-day, intensive evaluation. The evaluation involved blood work, imaging, EKG, Echocardiogram, stress test, 24 hour blood pressure monitoring, glucose tolerance test, psychological exam and complete physical. With each encounter, the healthcare professionals reassured me that I looked like a viable donor but they would know more after they presented my case to the “committee.”
When I left the medical center, I felt confident that I would be cleared and we could get the transplant underway. I had just started a new job and thought it would be easier to take leave before I had gotten too engrained in the position. However, that wasn’t my reality. The follow up phone call I expected in the next week did not occur as I had hoped. I was subjected to additional blood work and asked to ‘lose weight.’ Being the over-achieving first born, the fact that I did not qualify immediately was devastating and frustrating. I immediately changed my diet and started exercising more. For the next year, I endured additional testing, appointments and an ongoing internal feeling of letting my mother and family down as I was a “near perfect” match based on my blood and tissue typing.
Along the way I learned the system was not always focused on me and how the experience was affecting me and my family. I discovered that I had to become my own advocate and push and prompt the transplant team to retest and not count me out. I also had the stress of feeling like a failure to my mother and family. In October 2015, I made the drive back to the medical center for another intensive two-days of testing. While it was much easier this time physically, it was emotionally taxing to know that I could have more “targets” to meet – even though I had lost 15 pounds and reduced my cholesterol significantly. The physicians all noted that I had made significant life changes but this time there was something in my blood work. I had an elevated APTT and they needed additional testing to ensure there were not genetic issues. Defeated, I made the long walk to the lab for additional blood work.
A week later, I was asked to drive back to the medical center for another appointment. This time it was with a hematologist. This doctor would be determining my fate – – could I or could I not be a living donor and also, did I have some terrible bleeding disorder. Luckily, this physician saw the desperation in my eyes. He first reassured me that I did not have a bleeding disorder and that I was cleared based on his evaluation. At this moment, my only response was tears. Granted, I had heard these words before but this time, this was all we needed and it only took another month.
After my mother was cleared for surgery in December 2015, we had to just wait for a surgery date. We scheduled the date for surgery for March 6, 2016. The surgery date had only taken 24 months to finally be scheduled. One month prior to surgery, I got a frantic call from my transplant coordinator who needed me to have a skin check or we could not do the surgery. After all of the appointments, the regulations had changed in January and this was another requirement to be considered a viable donor. Luckily, I work at a medical school and I begged coworkers for a favor and was able to meet this task.
Becoming a donor was an easy decision for me but the process was emotional, frustrating, terrifying and quite disruptive at times. My experience demonstrates the complicated process by sharing the unclear outcomes, personal role disruption, conflicting information and an overall sense of urgency. Although I achieved my ultimate goal of donating my kidney, the disruption and chaos involved in the process made it far from a successful experience. In August 2017, I started my PhD and decided to focus my research on the importance of live kidney donation and what can be done to improve the overall process – specifically focusing on the living donor. In the US, 116,571 people are in need of a lifesaving organ transplant with over 3,000 new patients are added to the kidney waiting list monthly (OPTN, 2017). According to Organ Procurement and Transplantation Network (OPTN), a public-private partnership that links all professionals involved in US donation and transplantation system, 17,107 kidney transplants have taken place in the United States with 5,537 of those kidneys coming from living donors (OPTN, 2017). Many patients on the kidney transplant list die or become too ill to eventually have a kidney transplant.
I want to address the disruption – by focusing on the donor and how the evaluation process can be improved. Grounding my work in Minimally Disruptive Medicine, an approach grounded in a conceptual model and three cumulative complexity model theories (Normalization Process Theory, the Burden of Treatment, and the Theory of Patient Capacity), I hope to use my lived experience to help others (May, 2009 & Shippee, 2015). It wasn’t until I read, The Lived Experience of “Being Evaluated” for Organ Donation: Focus Groups with Living Kidney Donors, by Hanson, et al that I realized my experience was not unique (Hanson, 2017). Other living donors had some of the same experiences and feelings as I did during the process.
While I would never change my mind to not donate my kidney, having more clarity about the evaluation process, calibrated expectations about potential delays, and insights from real experiences from other living donors could have made the process easier. Developing, testing, and implementing tools to support this process may begin to address donor needs. Incorporating kind and careful minimally disruptive medicine concepts into live kidney donation could improve the overall process for the donors and ultimately increase live kidney donation over time.
Hanson, CS, Ralph, AF, Manera, KE, Gill, JS, Kanellis, J, Wong, G, Craig, JC, Chapman, JR, Tong, A. (2017) The Lived Experience of “Being Evaluated” for Organ Donation: Focus groups with Living Kidney Donors. Clin J Am Soc Nephrol. doi/10.2215/CJN.03550417
May C, Montori VM, Mair, FS. (2009) We need minimally disruptive medicine. BMJ. Aug 11; 339: b2803
Organ Procurement & Transplantation Network (OPTN). (2017) http://optn.transplant.hrsa.gov/ Accessed on 01Nov2017.
Shippee, ND, Shah, ND, May, CR, Mair, FS, Montori, VM. (2015). Cumulative complexity: a functional, patient-centered model of patient complexity can improve research and practice. J Clin Epidemiol. 65 (10): 1041-51
I would like to acknowledge Marleen Kunneman, PhD, Anna Kerr, PhD, Melissa Thomas, PhD, MPH, and Lisa Forster, MS for reviewing and editing the document.
Submitted by Paige Organick, Nataly Espinoza Suarez, M.D., Anjali Thota and Bjorg Thorsteinsdottir, M.D.
An 84 year old woman, whom I will call Amy, went to the hospital 4 years ago to receive a pacemaker. The surgeons botched the surgery, and subsequently told her she’d have, at most, 2 years to live. Four years and many procedures, interventions, and subsequent infections later she is still going strong. She carries a bag for her PIC line and cares for her husband, who is 94% blind, on dialysis, has had cancer, and is recovering from leg surgery. Amy and her husband live alone in their own home. If there ever was a couple in need of minimally disruptive medicine (MDM) to decrease their treatment burden, it is this couple.
After the prolonged hospitalization, Amy was dependent on a high risk heart medication that kept her hooked up to a cardiac monitor and essentially confined to her hospital room. Fortunately, she was invited to participate in the Palliative Homebound Program of the Care Transitions team at the Mayo Clinic. The multi-disciplinary team works on the Palliative Care homebound program; in theory, they assist seniors over the age of 60 with high risk medical conditions transitioning in and out of the hospital, focusing on palliative care and in-life transitions. But it seems they do much more than that, working on fall prevention, simplifying medications, and coordinating with nursing home staff, social workers and physicians to best aid the patient in their own home. Dr. Thorsteinsdottir and a Nurse Practitioner regularly visit Amy and her husband in their own home, and in return they freely call her personal cell phone whenever they have even the smallest question.
The team freely uses the basic concepts of MDM and the accompanying theories, even though they never call it by name. They acknowledge that imbalances occur between the patient’s capacity to perform cognitive and physical actions and the workload they were assigned by their various clinicians. This imbalance causes a burden of treatment, meaning that the patient feels overwhelmed, saddled with or stressed over some aspect of their therapeutic treatment. The Care Transitions team seeks to right this imbalance of overwork on the patient’s behalf. Nurses call regularly to assess coping, ongoing need and co-ordination of necessary appointments. Dr. T and Nurse practitioners come to Amy’s home to visit with the couple, relieving much of the burden of dealing with multiple appointments. Advice from subspecialty physicians is mostly sought via clinician to clinician phone calls. This means that, to get the most care, Amy didn’t have to navigate busy downtown Rochester, deal with finding parking, then walk the long distance up the ramp and into the clinic, which she said made her too tired.
Having Dr. T come to her home made care not only easier, but also more effective. It helps Dr. T and the nurses see the home environment and identify fall risks and other hazards, and better get to know and understand the patients on their own terms. This creates holistic care where clinicians better understand their patients, their values, and how to create medical values that align with that of their clinicians. A big focus of MDM, and the Care Team, is to understanding the patient’s needs and values. For example, some may not mind getting up early in the morning to drive their spouse to dialysis; Amy can’t stand it. No matter what, this is a burden of treatment for the couple. However, Dr. T and the Care Team understands the couple well enough to figure out an alternate bus Amy’s husband can take so Amy doesn’t have to wake up so early, decreasing Amy’s burden of her husband’s treatment, making her more happy, free, and less tired.
The Care Transitions team implicitly practices MDM, looking to simplify medical care for their patients. This indicates that the concept of MDM could be more widespread than previously believed, making it challenging to track and accurately assess how many care teams use MDM. This creates wide implications for how researchers ought to understand and track the spread of MDM. Knowledge of the term does not indicate use of the theories and philosophies behind it, and thus cannot be the sole way researchers look for other clinics using MDM, form collaborations, and provide resources for “MDM” clinics.
Deeyar Itayem is a third-year student at the Mayo Clinic School of Medicine. As part of her clerkship in family medicine, Ms. Itayem responded to a writing prompt meant to develop her thoughts about the role of a primary care physician. The prompt: “The ideas behind MDM or contextualized care ask us to respect the needs and circumstances of the patient before us as we construct our care plans. But that puts us in a weird spot, yes? Because just as MDM is this decade’s push, last decade’s push was evidence-based medicine: the idea that, through science, we can find a ‘best’ way to handle a problem, a ‘best’ treatment. It becomes our job to apply the evidence with less and less spin to it, if we dedicate ourselves to EBM purity. With that in mind, what is your opinion of the Minnesota Community Measures’ “D5” criteria (http://mncm.org/reports-and-websites/the-d5/)? What are the risks and benefits of adopting guideline-driven care? Do the D5 measures reflect a friendly contextualization of care?” Ms. Itayem’s response follows:
My first day with Dr. Lillie in clinic, we began with a meeting to discuss diabetes management of her panel. To ensure that patients were meeting goals, the team of nurses and panel assistant hovered over pages that were covered in colors that were intuitive – green was good and patients were meeting all the goals, red was bad and patients were not meeting the goals. Even listening for a minute or two, you could pick up on the dilemma: Anyone whose HgbA1c was above 7% was automatically in the red. Despite significant improvement in HgbA1c from 11% to 8.9%, this particular patient was still in the red and was not budging. The Minnesota Community Measures D5 criteria set the rules of the land, another checklist that was initially hard for me to swallow. We have had so many lectures on the importance of checklists, and I can see how useful it can be to measure all diabetes patients with 5 simple measurements. But a part of me cringes at the simplified boxes. You can easily review the green and red boxes in the panel to make sure patients don’t fall through the cracks. However, the colored boxes didn’t tell the whole patient’s story. There was no disclaimer that described the socioeconomic reality of the patient, no blue box on the side to say that depression plagued this patient, no asterisk to report the significant improvements.
Immediately after the D5 meeting, Dr. Lillie sent me in to talk to my first patient who happened to be one on the panel. I walked in to introduce myself to find the patient with the D5 sheet in hand, all the boxes neatly filled out. “Green. Green. Red. Green. Green,” I said in my head. Our conversation initially centered around the numbers, how her cholesterol was “good,” daily aspirin intake was exactly as recommended, her A1c was sooo close to 7% but red, etc. The conversation went easier as the goals were mutually agreed upon. But then I asked her to put the D5 checklist aside for a second to tell me how things were going. How was eating and exercising? How was she enjoying her days of retirement? Did she feel safe where she lived? Those were more the difficult conversations.
My experience thus far with the D5 criteria has been generally positive in that it gives patients specific measurable goals to make diabetes management tangible and the goals clear. To attain any health improvement, the importance of clear goals have been drilled into us through our “Motivational Interviewing” class. But as simple as you drill it down, diabetes is complex and the lives of the patients it consumes are likewise more involved than 5 checkboxes. The fact that it standardizes diabetes care is admirable, but it doesn’t replace the medicine that we’ve learned. What worries me is how my patient viewed it as a substitute to our conversations about her own goals. Once she hits all of the 5 goals on D5, is she done? Instead of teaching our patients how to make their own goals and crafting a culture of self-improvement, we’ve replaced that beautiful process with 5 rigid boxes standardized across the state.
Upon further research, I found websites touting D5 criteria scores for specific clinics in Minnesota. Physicians are being held accountable for their patients attaining 5 specific goals. My question is – do these scores reveal more about the physician’s worth or do they tell us more about the population they serve? Just as standardized test scores are used to assess a school’s success even though many factors play into that score. It is the same discussion. Are standardized tests important? Of course. Should a student’s score matter more than their improvement or the context of the score in their life? Hmmm.
Looking forward to navigating the checklists to come in my career. Hopefully, their implementation will help my patients receive better care, but I cannot help but cringe at the way they simplify the intricate patient lives. I hope we continue to treat patients instead of their diseases.
Jeremiah Joyce is a third-year student at the Mayo Clinic School of Medicine. As part of his clerkship in family medicine, Mr. Joyce responded to a writing prompt meant to develop his thoughts about the role of a primary care physician. The prompt: “The ideas behind MDM or contextualized care ask us to respect the needs and circumstances of the patient before us as we construct our care plans. But that puts us in a weird spot, yes? Because just as MDM is this decade’s push, last decade’s push was evidence-based
medicine: the idea that, through science, we can find a ‘best’ way to handle a problem, a ‘best’ treatment. It becomes our job to apply the evidence with less and less spin to it, if we dedicate ourselves to EBM purity. With that in mind, what is your opinion of the Minnesota Community Measures’ “D5” criteria (http://mncm.org/reports-and-websites/the-d5/)? What are the risks and benefits of adopting guideline-driven care? Do the D5 measures reflect a friendly contextualization of care?” Mr. Joyce’s response follows:
The Mayo motto “the needs of the patient come first” uses the singular noun; the patient is an individual. In practicing evidence based medicine, however, I think we often make the mistake of using population-based recommendations for individuals. There is an interesting precedent for the idea that a “one size fits all” model fits no one perfectly. In his book The End of Average, Todd Rose describes a U.S. Air Force study of pilot average body measurements, designed to tailor a cockpit that fit the average pilot. Out of over 4,000 pilots measured to determine the perfect dimensions, not a single one was within the average range in all of the 10 primary dimensions (Rose, 2016). This article is a fascinating physical example of a truth that undoubtedly applies to medical recommendations as well.
In practicing medicine, we should focus on tailoring the recommendations to fit the patient, rather than forcing the patient to fit the recommendation. We are all aware of the benefits of D5 recommendations on the long-term health of populations, but we also know some patients have ASA-induced asthma and others have statin-induced myositis. Still others haven’t been able to quit smoking despite their best intentions. We as future providers risk losing a therapeutic alliance with patients if we push too far or too hard. Someone with a recent diagnosis of diabetes may quickly be overwhelmed if we add on all the D5 as soon as their A1c is at 7.1%. As Rose describes in his book, the Air Force’s solution to their cockpit dilemma was increasing flexibility in the design, allowing pilots to adjust their planes. This approach resulted in a dramatic decrease in casualties. We may see the same effect when we work with patients to achieve the greatest benefit to their health. Across a panel of patients, we would be much more satisfied with a population of half-treated and gradually improving diabetics than we would be with losing many patients to follow-up due to frustration and disappointment with a rigid healthcare system.
(Rose, 2016) “When U.S. air force discovered the flaw of averages.” https://www.thestar.com/news/insight/2016/01/16/when-us-air-force-discovered-the-flaw-of-averages.htmlhttps://www.thestar.com/news/insight/2016/01/16/when-us-air-force-discovered-the-flaw-of-averages.html
Mark Kaczor is a third-year student at the Mayo Clinic School of Medicine. As part of his clerkship in family medicine, Mr. Kaczor responded to a writing prompt meant to develop his thoughts about the role of a primary care physician. The prompt: “Do the Minnesota Community Measures’ ‘D5’ criteria (http://mncm.org/reports-and-websites/the-d5/) for management of diabetes reflect a friendly contextualization of care for all people? What are the risks and benefits of adopting guideline-driven care? Mark was asked to argue the hypothesis that guidelines are a force for evil. His answer follows:
While mulling over why D5 guidelines and those like them might be a force for evil, I happened to pull up the advertising poster for the D5 guidelines and read this: “Your goals may be different based on your individual needs. Talk with your doctor or health care provider about the D5 goals that are right for you.” At this point, I thought that any
argument I was crafting was surely sunk, as D5 calls for proper contextualization of care right on its’ poster. I then began inspecting the poster closely and noticed that that line, which pertains to something that we have all been agreeing over the last few weeks is pretty important, was written in the smallest font, save for the copyright information, and positioned toward the bottom. While I do not want to read too much into artistic choices because I, myself, have no artistic instinct to speak of, I wonder if there is some dangerous parallel between how the idea of contextualization is treated on the D5 guideline poster and how well contextualization is performed in a clinical setting where guidelines and protocols are so adamantly promoted. To me, the line in question reads like the end of a drug commercial sounds: quickly and with no real deference to its subject matter.
Overall, I feel that how contextualization is presented on the D5 poster and the idea of pushing guidelines that are intended to generalize as much as possible creates a culture where contextualization, while mentioned frequently and lauded as a concept, hardly ever takes place. These guidelines are borne out of great intentions and adherence to them has, I am sure, produced some great statistics in whatever populations have been studied. Benefits of guidelines are numerous and include everything Lisa mentions. They are an effective safeguard against objectively poor care. I think one of the greatest risks that they pose, though, is a result of them being, by their very nature, somewhat anti-contextualization. I believe they aim to take some of the deep thinking out of medicine and successfully do so. The more providers are trained and encouraged to follow the guidelines, the less natural taking time to contemplate contextual factors feels. Proper contextualization is something that will always take deep thought. That is not to say that contextualization cannot take place while guidelines are kept in mind, but I think they do provide an additional barrier to something that is already done sparingly. Contextualization may always be the long-game when it comes to improving outcomes, but, like we have been discussing, it does do so, and there are so many more reasons to do it. As long as contextualization remains an afterthought when establishing guidelines, I do not anticipate the skill or frequency with which it is done will increase very much. I think guidelines are important and should exist, though, my belief is that our honest intention to contextualize patient care should be proudly presented at the top of the poster in the largest font.
To be truly patient centered, the healthcare system and healthcare professionals must consider the whole patient and their socioemotional, biogeographical context and values. Currently, the healthcare system often fails to consider issues like multi-morbidity and polypharmacy which contribute to patient complexity3. Consider for example the process of prescribing and acquiring medication. When a patient has an illness, they are often prescribed medical therapy by a healthcare professional. They then either have to drive to a pharmacy to pick up the prescription or wait for it to arrive in the mail. Until recently, pharmacies considered the prescription in isolation and not as part of a larger regimen, despite the prevalence of multiple prescriptions per person.
Recently, however, many pharmacies have begun to offer medication synchronization4. With medication synchronization, all of a patient’s prescriptions are organized so that they can all be re-filled on the same date, rather than making patients trek to the pharmacy multiple times for multiple different prescriptions for many different illnesses, reducing waste, cost, stress, time and the burden of treatment for the patient5. It may also improve medication adherence and therefore indirectly, improve health outcomes6. This process can be difficult to practically implement due to rules and regulations by insurance companies and others. However, Florida recently passed a law making the process a little easier for Floridians. This new law allows for partial refills and the co-pays must be prorated and mandates that insurers allow individuals to synchronize their medications at an in-network pharmacy at least once a year. While ideally synchronization happens on an ongoing basis, this law gives patients the ability have synchronization covered by insurance. Unfortunately, only about two dozen other states have this law7.
Continued efforts to make medicine minimally disruptive need to occur to create a patient-centered healthcare system. One company is trying to do just that. Lyft, the ride sharing app, has started coordinating with care teams to drive senior patients to their doctor’s appointments. This campaign reaches a demographic in need of help with their treatment burden, making it easier for those with limited access to transportation get to appointments efficiently and with reduced wait times.1 In turn, this campaign has saved money for insurance companies. CareMore, a company focused on senior care, has already saved over $1 million due to the decreased costs of Lyft rides compared to other forms of transportation and missed appointments due to faulty transportation times.1 While minimally disruptive medicine is not focused on saving financial costs, it is a nice side effect of minimizing treatment burden for patients, making this a sustainable outcome that positively impacts multiple sectors of healthcare.
In order to reach the senior demographic, Lyft started a new online program called Concierge2. Caregivers can access a website, instead of relying on smart phones, to call rides for their patients. One of the goals of this program is to decrease the amount of missed appointments seniors have because of their inability to find transportation, reducing stress, costs, and treatment burden2.
- Farr, Christina. Lyft is driving patients to see their doctors and saving insurers big money. CNBC News. 2017. https://www.cnbc.com/2017/08/04/lyft-is-driving-patients-to-see-their-doctors-and-saving-insurers-big-money.html
- Lyft Blog. 2016. https://blog.lyft.com/posts/nationalmedtrans-concierge
- Moffat K, Mercer SW. Challenges of managing people with multimorbidity in today’s healthcare systems. BMC Family Practice. 2015;16:129. doi:10.1186/s12875-015-0344-4
- Krumme, Alexis A MS. Prevalence, Effectiveness, and Characteristics of Pharmacy-Based Medication Synchronization in Programs. The American Journal of Managed Care. 2016; 22(3):179-186.
- Ross, Alexander. Sync and Swim: The Impact of Medication Consolidation on Adherence in Medicaid Patients. Journal of Primary Care & Community Health. 2013: 4(4):240-244. doi:https://doi.org/10.1177/2150131913486481
- Doshi, Jalpa A. PhD. Synchronized Prescription Refills and Medication Adherence: A Retrospective Claims Analysis. The American Journal of Managed Care. 2017:23(2):98-104.
- Andrews, Michelle. Florida law makes it easier for patients on multiple medications to sync prescription refills. MedCity News. 2017. https://medcitynews.com/2017/08/florida-law-makes-easier-patients-multiple-medications-sync-prescriptions/?utm_source=dlvr.it&utm_medium=twitter
Submitted by Paige Organick, Anjali Thota, Michael Gionfriddo, Kasey Boehmer
As healthcare becomes more standardized, there has been a proliferation of measures to track population health and appraise healthcare delivery. These measures are often used to report on disease prevalence and healthcare quality as defined by clinical practice guidelines or metrics imposed by health insurance providers. However, one crucial aspect of healthcare has been largely absent in these surveys; the burden of the work that patients endure to access and use care and enact self-care. This work is often time-consuming and complex. It includes learning about healthcare problems and treatments; enrolling in health insurance plans and affording medical costs; and daily medication-taking and health behaviors. The work is amplified by unregulated medication pricing, and delegation of work and costs to patients because they have more “skin in the game”. Those who are not excluded from healthcare by prohibitive costs and demands may have to spend multiple hours weekly on healthcare. But, high-value, high-quality, just healthcare should result in improved health outcomes with the least possible burden to patients and their caregivers.
In our recent publication, Assessing the Burden of Treatment, published in the Journal of General Internal Medicine (http://rdcu.be/t7Rx), we describe how we can start making the work of being a patient visible and useful. We report on two available measures that can be used to assess the burden of treatment and healthcare for patients with any or multiple health conditions.[2, 3] These measures vary in their lengths, properties and domains. Uncovering the burden of treatment can be used to track and improve healthcare services at the clinician, institution and national level. Consider the case of Carlos, a 52-year-old male Puerto Rican patient with diabetes who after a decade with reasonable glycemic control presents to his primary care physician with elevated blood glucose levels. The doctor assumes this is part of the natural history of disease and adjusts the insulin dosing accordingly. After some conversation, however, Carlos shares that he recently saw a four-fold surge in insulin prices at his local pharmacy that makes paying for insulin impossible on his budget. He is therefore awaiting an informal shipment of affordable insulin from a neighboring Caribbean island. He feels frustrated and disappointed but sees no other recourse. Carlos has taken on emotional and existential work to accept the loss of access to a life-saving medication which he had integrated into his daily life for years. He has done the work of searching among family, friends and acquaintances for alternative insulin sources. Carlos’ HbA1c readings may not be as consistent anymore; he must await inconsistent shipments and ration doses to manage his insulin supply. Uncovering the work that Carlos is doing to care of his health creates the space for a practical and productive relationship with his clinician. She may offer strategies for assessing the integrity of the product and adjusting carbohydrate intake. She can also share the information with colleagues who may be caring for patients in similar situations. If treatment burden was assessed on a large scale, with standardized measures, policy-makers can respond with price regulation and government agencies can offer subsidies and emergency supplies.
Assessing the burden that healthcare imposes on patients and finding ways to reduce patient workload can support a transition towards more holistic and practical models of care. Minimally Disruptive Medicine (MDM) is one such model that acknowledges that patients have life goals and responsibilities and finite resources (materials, energy, time and attention) with which to accomplish them. Therefore, MDM seeks to create healthcare that aligns with and fits in patients’ lives and goals. Collecting and tracking national information on patient treatment burden would make the work that patients do to manage their chronic illness much more visible to policymakers and clinicians alike. Ultimately, knowing the burden patients bear and the constraints they are under will guide providers in the treatment recommendations they make and partnerships they forge with patients to support health and well-being.
How does your organization uncover and track the work that is delegated to patients? How could you use these tools in your setting? We welcome discussion and questions! Comment below or tweet us @vmontori and @gabrielamabel12.
- Spencer-Bonilla, G., et al., Assessing the Burden of Treatment. J Gen Intern Med, 2017.
- Eton, D.T., et al., Development and validation of the Patient Experience with Treatment and Self-management (PETS): a patient-reported measure of treatment burden. Qual Life Res, 2017. 26(2): p. 489-503.
- Tran, V.T., et al., Adaptation and validation of the Treatment Burden Questionnaire (TBQ) in English using an internet platform. BMC Med, 2014. 12: p. 109.
- Boehmer, K.R., et al., Patient capacity and constraints in the experience of chronic disease: a qualitative systematic review and thematic synthesis. BMC Fam Pract, 2016. 17: p. 127.
- May, C., V.M. Montori, and F.S. Mair, We need minimally disruptive medicine. BMJ, 2009. 339: p. b2803.
Submitted by Gabriela Spencer Bonilla, Ana Quinones, and Victor Montori.
Gabriela Spencer-Bonilla is a 4th year medical student at the University of Puerto Rico and Mayo Graduate School alumnus. She works with the KER unit to describe patient work in diabetes care with a mission of just and kind healthcare.
Ana Quiñones, PhD MS, is an Associate Professor of Family Medicine at Oregon Health & Science University (OHSU) with affiliate appointments in the OHSU-PSU School of Public Health, and the Portland Veterans Affairs (VA) Health Care System. She is a gerontologist trained in health services organization and policy from the University of Michigan’s School of Public Health. Her research interests address four main areas: (1) age-related changes in health, (2) racial and ethnic disparities in health, (2) co-existing chronic disease (multimorbidity), and (4) health care delivery changes designed to improve the management of chronic conditions for vulnerable older adults.
Throughout her training, she has aimed to understand disparities in health stemming from differential access to resources for disadvantaged populations and subsequent effects on health and wellbeing throughout the life course. In this stage of her career, her work focuses on the development of and intersection between multimorbidity and disability—and the role that specific multimorbidity combinations play in accelerating poor health outcomes among older adults.
Often, when we take the time to understand a person’s context, we find that a raft of problems are tangled at their roots, and that addressing one causes a shift in another, a sort of game of pickup sticks in which piles vibrate easily. It can then be easy to lapse into nonaction, to let inertia determine the course of future events rather than to choose them actively. How, in the face of complexity, do you choose the next right action for your patient?
Maybe I’m taking it too far, or that the sentimental and idealistic mindset I felt when applying to medical school hasn’t quite warn off yet, but possibly the way to create a care plan for a patient is to step back and see his or her humanity. St. Augustine captures this well, encouraging us to “love human beings in a human way” – recognizing that we all have our faults, gifts, sources of joy and fear, and, most of all, are fragile. Taking the time to know a patient in this way, to create a type of filial love, opens us up to the real risk of disappointment. Our rational and scientific minds want to boil down sets of variables that can be easily manipulated in equations, quickly derived to maximize the functions we create. But we’re messy beings and even the body of our scientific knowledge about the human body falls well short of explaining the complex interworking’s of even an isolated human not burdened by the complexities of life and its web of connections with others.
Having a strong foundation of knowledge, both of basic science and optimal treatment plans, is an important place to start. Learning from those with more time in medicine and those who best understand the condition at hand (the patient and caregiver) fill in the gaps in our “book knowledge”. This clinical training seems to be a process of building what Daniel Kahneman calls “System 1 thinking.” We’ve spent the first two years of medical school building up “System 2” – facts we can logically, deliberately apply in a perfect setting. But we’re never in that setting and so our instinct, biases, and the heuristics we’ve collected through life and the early part of medical school take over, not because we’re lazy but because our minds have evolved to be efficient especially in the face of complexity – Kahneman’s System 1. We refine these heuristics, discarding some and collecting others, and, more importantly, being to learn to recognize those instances when “optimal care plans” — the way it’s always done — are inadequate. It is then that we need to engage our critical thinking skills (kind of sounds like something my 5th grade teacher would say, but still important). And eventually we begin to understand those words made famous by Kenny Rogers: “You’ve got to know when to hold ’em, know when to fold ’em, know when to walk away, and know when to run”. Still we will sometimes fail to change the course of a disease at all, but during our time with the patient we were able to join them on their journey and hopefully provide some benefit. Not to rationalize or take an overly game theoretic approach to modern health care, but maybe the measure of success is did we help make a patient better off than the she or he would have been had there been no encounter with health care – is this what is meant by “do no harm”?
I’m sure there will be times in medicine when throwing up our hands and letting it all play out doesn’t seem like such a bad option and yet we’re hopefully able to provide healing sometimes and comfort always.
Benjamin Mundell is a student at the Mayo Clinic School of Medicine, where he wrote the following response to a prompt from his family medicine clerkship.
When a patient comes to us, he or she is hiring our services to accomplish something in his or her life. I always find it an intriguing question to wonder, “What is this patient hiring us to do?” In other words, “What is the patient’s job to be done?”
To me, the concepts of Minimally Disruptive Medicine, Contextualizing Care, Shared Decision-Making, Patient-Centered Care, Individualized Medicine, etc. are all different but similar ways of helping us understand the patient’s “job to be done” and customizing our arsenal of tools, skills, and knowledge to help him or her fulfill that job.
In a way, a patient encounter is a negotiation. In negotiations, people often make the mistake of immediately trying to gain as big a possible piece of a fixed pie that they can. In reality, however, it is usually far more beneficial to first ask questions of one another to grow the pie before divvying it up. Growing the pie, however, requires the patience, dialogue, and trust to understand one another’s priorities as well as the ability to align those priorities to create maximum value for each party. It requires debunking an often innate assumption that the pie is fixed in the first place.
Furthermore, in medicine the negotiations are rigged. As providers, we wield all the authority in making the plans but we often forget that we have none of the power in implementing them.
Each of us, as providers, has a default set of assumptions at baseline. Baseline assumptions, however, are often overlooked even though they have profound influences on results. A look back to the launch of Space Shuttle Challenger on January 28, 1986 reveals a painful lesson about default assumptions. In an emergency conference call on the night of January 27, engineers and executives of Morton Thiokol (manufacturers of the solid rocket boosters) told NASA managers and flight controllers that they were concerned because the overnight temperatures were going to be colder than they had ever planned for or had data about and they were concerned that elastic o-ring seals on their boosters may not function properly during liftoff at such cold temperatures.
NASA leaders, however, had already made “launch” the default assumption in their mind. George Hardy, Manager of the Solid Rocket Booster Project, reportedly responded to Thiokol’s request to delay the launch with, “I am appalled. I am appalled by your recommendation”. Millions of people watched on TV the next morning as the Challenger exploded a little over one minute into flight, later determined to be a result of the failure of the elastic o-ring seals.
In medicine, “launch” is often our default. With a few easy clicks of the computer, we can engage sophisticated technologies, armies of staff and services, novel treatments from around the world, and cash flows that can bury our patients in economic turmoil, none of which we have to pay for or experience ourselves. The pain, inconvenience, and expense of what we enact we rarely see or even have time in clinic to ponder. Furthermore, when the rocket explodes, we aren’t in the cockpit.
Minimally Disruptive Medicine is, from my understanding, an umbrella term that encapsulates a number of focused and targeted strategies for providing services and treatments that are aligned with our patient’s own unique “job to be done” and are simple, easy, and convenient for that particular patient to participate in and adhere to.
Contextualizing care is a process of empathizing with each patient to understand where our assumptions as providers may be false and to attempt to determine that individual patient’s expressed and even unexpressed needs, desires, and limitations. Knowing an individual’s context and status in life helps us remedy our false assumptions and thereby gain a more accurate understanding of a patient’s priorities and how our care can be optimally aligned with those priorities.
The very name “Minimally Disruptive Medicine” starts with the assumption that care will be disruptive and that our job as providers is to minimize that disruption. However, Ritz-Carlton’s mission is not, “Avoid bothering our guests too much.” Their mission is actually quite long, but the final line is, “The Ritz-Carlton experience enlivens the senses, instills well-being, and fulfills even the unexpressed wishes and needs of our guests.” It is ambitious but inspiring for employees. I am not sure I am inspired by making something less awful for my patients; I think we have a long way to go in how we frame the care we provide. I believe in the pursuit of MDM and respect and look up to Dr. Montori and the entire KER team. MDM has obviously been highly successful at getting out the message that care, especially chronic care, is extremely disruptive to patients and needs to be redesigned. Moving this from discovery to translation to application at large scale, however, is another story. A 2015 “Minnesota Physician” article on MDM discussed that a 22-chapter implementation guide for MDM was in the works. I haven’t found that manual yet, but a 22-chapter implementation guide sounds frighteningly complex when the overall goal is to reduce complexity.
Every time I hear or read Minimally Disruptive Medicine, it is impossible for me not to also think about a completely different but similarly-named and ironically applicable theory, that of Disruptive Innovation. Disruptive Innovation is a theory that “explains the process by which complicated, expensive products and services [such as medicine] are transformed into simple, affordable ones. It also shows why it is so difficult for the leading companies or institutions [like Mayo Clinic] in an industry to succeed at disruption. Historically, it is almost always new companies or totally independent business units of existing firms that succeed in disrupting an industry.” (From Innovator’s Prescription by Clayton Christensen, page 3).
To me, a more rapid and effective approach to achieve the goals of MDM would be a Disruptive Innovation approach, something that would seem radical and unviable to the “leading companies and institutions” like Mayo Clinic. A Disruptive Innovation solution may likely be centered around a new baseline, one where the default assumption will be that a patient does not want any healthcare services or treatments and only through discussion of each patient’s unique priorities would you begin to build a thorough and individualized plan from scratch that encompassed every aspect of a person’s life. I can quickly envision a vertically integrated approach to “healthcare” that coordinates and organizes all the important elements of people’s lives, including food, fitness, financial services, education, career navigation, child care, etc.
Of course, doing something like this requires fundamentally restructuring the entire way in which we deliver and ensure “health”, “healthcare”, and “medicine.” This is why I am an advocate for Disruptive Innovation as a “build from scratch” rather than “rebuild what we’re already doing” model. In healthcare, we must sit in the cockpit with our patients. To do that, however, we must restructure everything, including, and perhaps most importantly, who pays us, when they pay us, why they pay us, how they pay us, what they pay us, and what they pay us for.
John Schupbach is a student at the Mayo Clinic School of Medicine, recent graduate of Harvard Business School, and Founder and CEO of Squalor to Scholar. He plans to complete his residency in Emergency Medicine and eventually to engage in practice redesign efforts globally. He wrote this response to a writing prompt as part of his Family Medicine clerkship.