Category: Miscellaneous

“So what happened here,” and my doctor would point to a single blood sugar from three Thursdays ago, a 243 mg/dL at 3 am.

And I wracked my brain trying to remember what happened that night. Had I changed my pump site before bed? Sometimes that causes a high afterwards. Did I eat a snack and miscalculate the insulin dose to cover it? Did I over-treat a low?  I couldn’t remember specifically what happened.  Do I make something up?  Do I lie?

I shrugged with frustration. “I think diabetes happened there.”

Type 1 diabetes doesn’t exist outside of the context of life.  I wish it did; I wish diabetes was something that existed independent of everything else in my life, making it absent the influence of variables like exercise, eating, and emotions.  But diabetes is a pervasive, persistent thread that weaves its way around every aspect of my life, from breakfast to the last thought before falling asleep at night.  It’s the preposition that dangles off of every thought – “with diabetes” – and makes my disease a constant and necessary priority.

Minimally Disruptive Medicine makes sense as an approach for chronic illness because it flies in the face of what chronic illness attempts to do, which is to disrupt.  Diabetes is very disruptive and intrusive, so making my care approach towards the disease more streamlined and integrated creates a culture of hope, motivation, and effort.

When it comes to building a care plan with my medical team, my personalized variables need to take center stage.  Ask me what my goals are, instead of building treatment recommendations around what you think my goals should be.  Do I want an A1C that’s within ADA guidelines?  Of course.  But am I willing to achieve that goal by way of several low blood sugar events per week?  No way.  My doctor’s goal may be to improve my fasting blood sugars, while my goal might be to overcome my fear of overnight hypoglycemia.  How do we take medical guidelines and best practices and balance those within the context of my real life?

Diabetes maps differently in every single life, so personal preferences take precedence.  You recommend that I wear an insulin pump to help best control my blood sugars?  Prescribing the device is one thing, but I also need training on how to integrate this technology into my real life.  Connect me with peers who wear their insulin pumps safely and confidently at the beach, or while running, or while tending to the needs of their small child.

Show me “how” instead of telling me “why.”

Talk to me about my preferences, my goals, and my life, because that’s where my diabetes exists.  Diabetes exists around my life, not the other way around.  I don’t build my life around diabetes.  It’s not a hole in me or the whole of me.  There’s life to be found after diagnosis, and my focus remains on making the most of that life.

Kerri Sparling has been living with type 1 diabetes for over 29 years, diagnosed in 1986.  She manages her diabetes and lives her life by the mantra “Diabetes doesn’t define me, but it helps explain me.”

 Kerri is a passionate advocate for all-things diabetes. She is the creator and author of Six Until Me, one of the first and most widely-read diabetes patient blogs, reaching a global audience of patients, caregivers, and industry.  Well-versed in social media and its influence on patients, Kerri presents regularly at conferences and works full-time as a writer and consultant.  Her first book, Balancing Diabetes (Spry Publishing), was released in the Spring of 2014.

 Kerri and her husband, Chris, live in Rhode Island, USA with their daughter. 

2017 Workshop – Rochester

 

Monday, October 23rd
7:30- 8:00 AM 8:00 – 9:00 AM   9:00 -9:30 AM	Registration Plenary: Where have we been this year? Setting the stage for our two days together Kasey Boehmer, MPH — slides   video Coffee Break – Move to Breakout Rooms
9:30 – 10:45 AM	Large Workshop: My Life, My Healthcare Kasey Boehmer, MPH
11:00-12:30 PM	Large Workshop: Capacity Coaching-Experience from the Front lines Kathryn Havens, MD/Jason Soyring/Nicole Burow
2:30 – 3:45 PM	Small Breakout 1: Chronic Disease Self-Management Program (CDSMP) Lori Christiansen, MD, MSc
	Small Breakout 2: Design Tips and Tricks from the Front Lines – Part 2 Ian Hargraves, PHD/Maggie Breslin
	Small Breakout 3: Kidney Disease MDM & SDM Group (Bjorg Thorsteinsdottir, MD/Bob Albright, MD/Elizabeth Lorenz, MD
3:45 – 4:15 PM 4:15-5:00 PM	Small Breakout 4: MDM in the wild Kasey Boehmer, MPH (Overview of CCM VS MDM) Beth Rogers, MD CCC/Moain Abu Dabrh, MB, BCh, HIV Clinic work Coffee Break – Move to Large Hall Plenary: Workload and Bo T Experience in France Viet-Thi Tran, MD — slides  video

 

Tuesday, October 24th
8:00 – 9:15 AM 9:15 –  9:45 AM	Plenary: Shared Decision Making Trials Erik Hess, MD — slides  video Coffee Break – Move to Breakout Rooms
9:45 – 11:00 AM	Large Workshop: Doing + Teaching SDM Summer Allen, MD = clinical perspective; Marleen Kunneman, PHD = teaching perspective
11:15 – 12:30 PM	Large Workshop: MPH: System-level SDM Implementation + Challenges Summer Allen, MD/Kasey Boehmer, MPH
2:30 – 3:45 PM	Small Breakout 1: Minimally Disruptive SDM Trials Annie LeBlanc, PhD/Sara Dick
	Small Breakout 2: New Approaches and new contexts for SDM Rongchong (Lucy) Huang, MD/Victor Montori, MD, MSc
	Small Breakout 3: SDM for step down/stopping decisions Michael Gionfriddo, PhD, PharmD
3:45-4:15 PM 4:15-5:00 PM   5:00 PM	Small Breakout 4: Design Tips and Tricks from the Front Lines – Part 1 Ian Hargraves, PhD/Maggie Breslin Coffee Break – Move to Large Hall Plenary: Patient Revolution Victor Montori, MD, MSc   Adjorn
4:15  5:00 PM	Tuesday, October 24th 8:00 – 9:15 AM 9:15-9:45 AM Plenary: Shared Decision Making Trials Erik Hess, MD — slides  video Coffee Break – Move to Breakout Rooms 9:45 – 11:00 AM Large Workshop: Doing + Teaching SDM Summer Allen, MD = clinical perspective; Marleen Kunneman, PHD = teaching perspective 11:15 – 12:30 PM Large Workshop: MPH: System-level SDM Implementation + Challenges Summer Allen, MD/Kasey Boehmer, MPH 2:30 – 3:45 PM Small Breakout 1: Minimally Disruptive SDM Trials Annie LeBlanc, PhD/Sara Dick Small Breakout 2: New Approaches and new contexts for SDM Rongchong (Lucy) Huang, MD/Victor Montori, MD, MSc Small Breakout 3: SDM for step down/stopping decisions Michael Gionfriddo, PhD, PharmD     3:45-4:15 PM Small Breakout 4: Design Tips and Tricks from the Front Lines – Part 1 Ian Hargraves, PhD/Maggie Breslin Coffee Break – Move to Large Hall 4:15 – 5:00 PM Plenary: Patient Revolution Victor Montori, MD, MSc— slides video 2017 Workshop – Rochester   Monday, October 23rd 7:30- 8:00 8:00 – 9:00 AM   9:00 -9:30 Registration Plenary: Where have we been this year? Setting the stage for our two days together Kasey Boehmer, MPH — slides   video Coffee Break – Move to Breakout Rooms 9:30 – 10:45 AM Large Workshop: My Life, My Healthcare Kasey Boehmer, MPH 11:00-12:30 PM Large Workshop: Capacity Coaching-Experience from the Front lines Kathryn Havens, MD/Jason Soyring/Nicole Burow 2:30 – 3:45 PM Small Breakout 1: Chronic Disease Self-Management Program (CDSMP) Lori Christiansen, MD, MSc Small Breakout 2: Design Tips and Tricks from the Front Lines – Part 2 Ian Hargraves, PHD/Maggie Breslin Small Breakout 3: Kidney Disease MDM & SDM Group (Bjorg Thorsteinsdottir, MD/Bob Albright, MD/Elizabeth Lorenz, MD             3:45-4:15 PM 4:15-5:00 PM Small Breakout 4: MDM in the wild Kasey Boehmer, MPH (Overview of CCM VS MDM) Beth Rogers, MD CCC/Moain Abu Dabrh, MB, BCh, HIV Clinic work Coffee Break – Move to Large Hall Plenary: Workload and Bo T Experience in France Viet-Thi Tran, MD — slides  video     Tuesday, October 24th 8:00 – 9:15 AM 9:15-9:45 AM Plenary: Shared Decision Making Trials Erik Hess, MD — slides  video Coffee Break – Move to Breakout Rooms 9:45 – 11:00 AM Large Workshop: Doing + Teaching SDM Summer Allen, MD = clinical perspective; Marleen Kunneman, PHD = teaching perspective 11:15 – 12:30 PM Large Workshop: MPH: System-level SDM Implementation + Challenges Summer Allen, MD/Kasey Boehmer, MPH 2:30 – 3:45 PM Small Breakout 1: Minimally Disruptive SDM Trials Annie LeBlanc, PhD/Sara Dick Small Breakout 2: New Approaches and new contexts for SDM Rongchong (Lucy) Huang, MD/Victor Montori, MD, MSc Small Breakout 3: SDM for step down/stopping decisions Michael Gionfriddo, PhD, PharmD     3:45-4:15 PM Small Breakout 4: Design Tips and Tricks from the Front Lines – Part 1 Ian Hargraves, PhD/Maggie Breslin Coffee Break – Move to Large Hall 4:15 – 5:00 PM Plenary: Patient Revolution Victor Montori, MD, MSc— slides video 2017 Workshop – Rochester   Monday, October 23rd 7:30- 8:00 8:00 – 9:00 AM   9:00 -9:30 Registration Plenary: Where have we been this year? Setting the stage for our two days together Kasey Boehmer, MPH — slides   video Coffee Break – Move to Breakout Rooms 9:30 – 10:45 AM Large Workshop: My Life, My Healthcare Kasey Boehmer, MPH 11:00-12:30 PM Large Workshop: Capacity Coaching-Experience from the Front lines Kathryn Havens, MD/Jason Soyring/Nicole Burow 2:30 – 3:45 PM Small Breakout 1: Chronic Disease Self-Management Program (CDSMP) Lori Christiansen, MD, MSc Small Breakout 2: Design Tips and Tricks from the Front Lines – Part 2 Ian Hargraves, PHD/Maggie Breslin Small Breakout 3: Kidney Disease MDM & SDM Group (Bjorg Thorsteinsdottir, MD/Bob Albright, MD/Elizabeth Lorenz, MD             3:45-4:15 PM 4:15-5:00 PM Small Breakout 4: MDM in the wild Kasey Boehmer, MPH (Overview of CCM VS MDM) Beth Rogers, MD CCC/Moain Abu Dabrh, MB, BCh, HIV Clinic work Coffee Break – Move to Large Hall Plenary: Workload and Bo T Experience in France Viet-Thi Tran, MD — slides  video     Tuesday, October 24th 8:00 – 9:15 AM 9:15-9:45 AM Plenary: Shared Decision Making Trials Erik Hess, MD — slides  video Coffee Break – Move to Breakout Rooms 9:45 – 11:00 AM Large Workshop: Doing + Teaching SDM Summer Allen, MD = clinical perspective; Marleen Kunneman, PHD = teaching perspective 11:15 – 12:30 PM Large Workshop: MPH: System-level SDM Implementation + Challenges Summer Allen, MD/Kasey Boehmer, MPH 2:30 – 3:45 PM Small Breakout 1: Minimally Disruptive SDM Trials Annie LeBlanc, PhD/Sara Dick Small Breakout 2: New Approaches and new contexts for SDM Rongchong (Lucy) Huang, MD/Victor Montori, MD, MSc Small Breakout 3: SDM for step down/stopping decisions Michael Gionfriddo, PhD, PharmD     3:45-4:15 PM Small Breakout 4: Design Tips and Tricks from the Front Lines – Part 1 Ian Hargraves, PhD/Maggie Breslin Coffee Break – Move to Large Hall 4:15 – 5:00 PM Plenary: Patient Revolution Victor Montori, MD, MSc— slides video

 

Submitted by Kasey Boehmer

In the midst of this COVID19 pandemic, those of us seeking to be responsible citizens, keep social distancing, while continuing to fulfill our obligations to family, community, and work, are feeling overwhelmed. It is all too much. Our research may help us understand that feeling and perhaps find ways forward. 

In 2016, we released a manuscript titled: “Patient capacity and constraints in the experience of chronic disease: a qualitative systematic review and thematic synthesis.” This review synthesized 110 published papers across a variety of chronic conditions seeking to understand what exactly gives people the capacity to handle chronic illness. We describe patient capacity as the abilities and resources that are mobilized to support the work of life and healthcare.

Our review uncovered five factors that a patient must interact with to generate their capacity: biography, resources, environment, patient work, and their social network (BREWS). We call this the descriptive Theory of Patient Capacity, and will demonstrate how each construct works when dealing with chronic illness. A biography is the narrative of normal life that we create; when chronic illness comes along and interrupts this narrative by way of bothersome symptoms and new treatment routines, one can experience biographical disruption. Resources are what are mobilized in an effort to support the work of managing life and healthcare. These may include things like finances, transportation, physical energy, time, knowledge, self-efficacy, etc. Environments are places of work, living, and healthcare. Patient work, when done in small segments, can generate new capacity for additional tasks through the experience of accomplishment; when work is given in an overwhelming fashion (all the tasks at once), capacity may be reduced. Finally, the social network can generate capacity through support, or be detrimental to capacity if unsupportive. For example, a patient who needs to eat at specified meal times could have social connections that subsequently adjust their meal times in an effort of togetherness or tells the patient it is no big deal to deviate from the plan that may be best for their condition’s management.

This theory was derived from published experiences of patients living with chronic illness, which is a population familiar with the sometimes massive disruption of life from diagnosis and treatment. However, it occurred to me yesterday on my walk that it can actually be a useful framework for what we are experiencing on a societal level right now amidst a pandemic. Almost everyone that I have spoken to by email, phone, or facetime, has indicated what seems to feel like the shrinking in their cognitive bandwidth. People are saying things like “I handle one tiny thing, and the next thing comes at me.” How might we use the BREWS framework to navigate the current climate? Let’s take a look at what is happening right now in each domain.

Biography – each one of us has a well negotiated set of routines, social roles, and normalcy. We may be, for example, employed by large organizations, run small businesses, or stay-at-home parents for kids. We all have routines of day to day life such as cooking breakfast, going to our favorite restaurants for lunch, friends we regularly socialize with, and extracurricular activities for ourselves or our children in the evenings. Suddenly all of our routines are being upended. We are rapidly evolving our daily routines to try to accommodate these life changes. Suddenly, we need to work from home, sometimes while simultaneously becoming homeschool teachers. Our typical jaunts from place to place are almost entirely restricted at the moment beyond what is absolutely necessary as we all work to minimize societal impact of the COVID-19 pandemic. These massive shifts in routine create a loud roar of cognitive dissonance in our brains, which find comfort in routine. Creativity is in short supply as our brains work to learn all the new tasks very rapidly. Put in short, we are all in the midst of a massive-scale biographical disruption.

Resources – These are the things we mobilize to deal with such shifts, and they seem uncertain in pandemic times. Many people are being faced with the reduced ability to work for income, especially if they are in a service industry or owners of a business. This straps our collective financial resources, which otherwise might be employed to cope with various aspects of disruption (e.g. hiring childcare). Our knowledge base is one we often mobilize to cope with new situations, and yet our knowledge base about the novel COVID-19 virus appears to change quite literally by the hour. Suddenly, we all need some knowledge of epidemiology to understand the “flatten the curve” lingo being used worldwide. Self-efficacy is a resource of confidence generated from doing or watching others do, and yet very few of us have experiential knowledge of such a situation to draw upon for confidence in this new one.

Environment – For many of us, our environments are now rapidly decreasing in scope as we hunker down in our homes. The places we seek care, an important part of our capacity in coping with healthcare matters, are rapidly trying to adapt from planned, routine care with some emergent services, to crisis response in a pandemic. As the ground we stand on feels shaky, so do we.

Work – To generate capacity, we actually have to accomplish some work, and it must be broken down in such a way that we can do so. Having such a volume of work that it feels too cumbersome to break down is a significant detriment to our capacity. Right now, in the span of seven to ten days, most of us have had new work thrown at such rapid-fire pace, we feel completely paralyzed to act.  

Social Network – In trying times, it is not uncommon for us to lean on our family, friends, and even acquaintances to get through. Often, we can even “borrow” some capacity from others to act in difficult times (e.g. asking someone to go to the pharmacy for you when you’re feeling too ill to go yourself). However, in such a time where every person’s capacity seems taxed, it feels uncertain who we might turn to in order to borrow anything, including toilet paper. Furthermore, even if not providing practical support, our social network often provides emotional support. We are mostly used to this happening during face-to-face interactions with physical displays of care, such as hugs. Yet, in a time of “social distancing” we find ourselves physically at a distance from those who may be our rocks. We are forced to think creatively about how to engage otherwise, through text, phone, or video. In a time where creativity is already taxed for reasons above, this may feel like too much.

This, my friends, is WHY it all probably feels like a little too much right now. If you’re feeling like your capacity is completely overwhelmed at the moment, know it is to be expected when we look at the current situation through the BREWS framework. So what are we to do? It seems we may be in for an indeterminate number of days ahead where the ground feels shaky, which means we need to build our capacity accordingly. We also don’t all have a personal capacity coach sitting on our shoulders to help us do this.

First, take heart in knowing that when working to build capacity with patients now living with chronic illness, we don’t start by tackling every single area of capacity all at once – that overwhelms overwhelmed people. What we would typically do is start by assessing where people are at – by taking stock, we can assess where we need to bolster our capacity, but also where we already possess strengths. Then, based on what one wants to work on, we would create small experiments to try. Note, I did not say goals, and I did not say assignments. Experiments. Each experiment is a new opportunity to learn something. Even if it didn’t go as planned, each time we can ask ourselves, what did I learn? We also don’t set up too many experiments. For example, we might have 1 – 3 in a week. Then, at the beginning of the next week, we would assess what worked, what didn’t work, and what we learned. Based on that information, we would keep the ways of working we liked and build on them. We would discard what we didn’t like after extracting the learnings, and choose new experiments. This process often continues for weeks or even months, so be patient with yourself. Reach out virtually to those in your social circle so you can be mutually supportive even while physically at a distance.

Hang tough friends, we can do this! Tell us about what of this was helpful and what you’d like to see more of – we are here together for the ride.

REPOSTED WITH PERMISSION (https://www.thoughtarchitects.ca/blog )

Submitted by Margie Sills Maerov, BScOT, MBA, CHE

“Our group has come to understand that the challenge of evidence isn’t simply communicating what we know clearly to our patients—although that alone is a significant challenge. Instead, the real challenge is how to use evidence to discover what’s best for the particular patient in light of his or her circumstances and values.” (Hargraves et. al. 2016).

Ever felt incredibly lucky? I certainly have recently. In addition to my new role here at Thought Architects, I just started with the University of Alberta in the Faculty of Medicine and Dentistry in the Department of Lifelong Learning (or L3 as the “insiders” call it). The leaders there believe that a key piece of continuing education that physicians, dentists and their teams need is the ability to foster others’ thinking – and they want to bring Cognitive Coaching into their “pillars” of support. What I love about this new gig is that I am surrounded by passionate leaders, thinkers and doers who want to impact change. (As an aside, stay tuned for my next podcast on leadership – and how it can be truly great!)

As part of this new work I am taking on, I found myself at the Mayo Clinic in Rochester last week. Their conference on “Care That Fits” is the next iteration of the Minimally Disruptive Medicine (MDM) model. At the heart of the MDM model is the need to look at care and the burden of care differently. There is a subjective sense of capacity and capability that any patient has when balancing the demands of life and care, and how much capability the patient feels they might have. The premise is that in medicine we not only need to be attune to the medical condition, but also the real needs of the patient. For example, it is more about our need to “do our job” of providing medical advice when asking a patient to more frequently monitor blood sugars when they might have issues of food insecurity, or might be living in an abusive relationship. Instead, our jobs need to be about honouring what the patient values and needs, provide the “best medical advice”, and then help the patient make up their own mind on what makes sense for them. The challenge that providers have is that what we might want patients to do might not be what they want to do – and how to be OK with that.

How do we create the right conditions so that our goal of care evolves to fostering a greater the sense of self-directedness a patient has to manage his or her own condition, life circumstances and environment. In Cognitive Coaching, self directedness is defined as someone who is able to:

1. Self-Manage – I am in charge of me

2. Self-Monitor – I know how I am doing

3. Self-Modify – I know how to make changes in what I want to do

A nuanced shift in medical practice occurs when considering MDM. Building the resourcefulness of the patient to be self-directed is the ultimate outcome and goal of care – not necessarily adhering to best-practice guidelines. This requires providers to intervene not at the behaviour level, but instead at the “thinking level”. All behaviour is preceded by thoughts. Impact the thoughts, you can impact the behaviour.

At some level, a patient will have to decide to make change or not make change. A change in their lifestyle, how they live or the decisions they make. As providers, we hope that patients will make decisions that foster health and well-being (at least by our definition – a possible blind spot). Providing that definition is our role as a “consultant”. Fostering a patient’s sense of resourcefulness for change is our role as a coach.

One supportive approach to aiding providers is the use of shared decision making approaches (SDM). Changing workflows in practice to support SDM can be challenging at times. The brilliant Kasey Boehmer (@krboehmer) and her colleagues have developed the ICAN Discussion Aid through several iterations of user-centered design principles, interviews, and observations. It captures a patient’s subjective sense of burden and capacity, and helps shape a clinical encounter towards what is important to the patient in their care. It has been used not only to support patient-centred care practices, but also as a program planning and quality improvement tool. You can find the tool online:

My Life My Health Care

Interested in learning more? Reach out on Twitter (@msmaerov) or at margie@thoughtarchitects.ca and I can share what I learned, and see if the ICAN might be a fit in your clinic!

Submitted by Richard J. Holden, PhD

A couple years ago, my Indiana University colleague Shannon Risacher, PhD made national news with a study in JAMA Neurology. Of the more alarming news headlines was one titled, “OTC Meds Shrink the Brain.” Indeed, her study showed older adults taking medications with “anticholinergic effects” had smaller brain volume and worse cognitive function, compared to those not taking these medications.

What are anticholinergic medications?

I first learned the term “anticholinergic” from my collaborators, who are world leaders in studying these medications. (Thereafter, I began seeing these medications everywhere I looked!)

Photo of one of many over-the-counter products
with anticholinergic effects (circled), taken at
an airport convenience store.

The term “anticholinergic” sounds like something from a $2000 Jeopardy question and we believe few people know the term or what it means, even among those who regularly use anticholinergics. This is partly because the term “anticholinergic” is not found on medication packages or prescriptions. Anticholinergic is not an ingredient; instead, it refers to various ingredients that affect the cholinergic system by blocking acetylcholine receptor sites, thus disrupting the neurochemical process behind human cognition.) Anticholinergics include prescription products such as paroxetine (e.g., Paxil) and oxybutynin (e.g., Ditropan), as well as nonprescription products such as diphenhydramine (e.g., Benadryl) and doxylamine (e.g., Unisom).

Don’t panic!

Headlines about shrinking brains can be frightening, so keep in mind the following. First, all medications have risks and benefits, not just those with anticholinergic effects. Taking any medication should be a deliberate, informed choice, weighing symptom relief against the potential for harm. Second, taking a single dose for seasonal allergies will not vaporize the temporal lobe cortex (although it might make you sleepier the next morning, the so-called “Benadryl hangover”). The effects on the brain appear to be cumulative and related to long-term exposure. Third, findings of harm from anticholinergic medications have come from studies of older adults only. Anticholinergics are on the Beers list of medications that are potentially inappropriate for older adults, but it is not clear whether younger adults are also at risk. Fourth, the studies linking long-term anticholinergic use to outcomes such as dementia, memory problems, and delirium are correlational. Scientists have not yet shown a causal link between anticholinergic medication use and subsequent cognitive changes.

New research on anticholinergic medications

That brings me to another story that was in the national press a couple months ago with equally shocking headlines, like “Commonly prescribed drugs are tied to nearly 50% higher dementia risk in older adults, study says.” That CNN reports quotes from an invited JAMA Internal Medicine commentary I wrote with colleagues Noll Campbell, PharmD, and Malaz Boustani, MD. The two main messages from the commentary are:

1. We need studies to test causality between anticholinergics and dementia. There is considerable evidence correlating use of anticholinergic medications with brain harm. But correlation is not causation. Showing causality requires a study in which anticholinergic medications are started or stopped, followed by measures of subsequent cognitive function. (It would be unethical to make people start taking anticholinergic medications, but one can study what happens when they stop.)
   
   As a matter of fact, we just received a total of $6.8 million from the National Institutes of Health (NIH) to conduct two such studies: one led by Dr. Campbell, the other by me. In both, we will measure what happens when older adults stop versus continue using anticholinergic medications.
   
2. We need anticholinergic deprescribing interventions. The second point of the commentary is the need to develop and test effective interventions to reduce the use of anticholinergic medications. Both newly funded studies will test interventions to “deprescribe” anticholinergic medications.

Deprescribing anticholinergics

For years we have been working on anticholinergic deprescribing. (The term deprescribe means removing or replacing medications a person is taking.) Among our team’s initiatives to help people attain a safer medication regimen, one of the more promising is a direct-to-consumer mobile app called Brain Buddy. The app targets consumers because we have found people taking anticholinergic medications are not aware of their risks. Once they learn of the risks, many want to know what to do next. Brain Buddy is meant to help them take the next step. We recently tested Brain Buddy to see if it is usable and feasible. It is! Brain Buddy received high marks for usability and 100% of our participants felt more informed about their medication safety after using the app. Over 80% also ended up talking to their physicians about their current anticholinergic medications.

Empowering patients and other consumers

We are not the only ones using apps to inform and empower people – or more low-tech approaches to deprescribe medications unsafe for older adults. However, our app will be the first to inform and empower anticholinergic medication users to work with their physician towards a potentially safer medication regimen. We expect our upcoming studies will show that our app and other interventions are effective and practical. If so, future readers of startling headlines about shrinking brains may use our tools as a pathway to safer alternatives.

Purposes Poster

Submitted by Christina LaVecchia, PhD

 

Medically unexplained and contested illnesses have long been a subject of interest—not only to those directly experiencing this form of suffering or caring for those who do, but also to the public at large.

Take, for instance, the 2018 Netflix docuseries Afflicted. The series portrays the experiences of people with misunderstood and stigmatized diagnoses and soon after its release was criticized by those it portrayed and by their families and caregivers as “craft[ing] the most sensationalist narrative possible” through “errors, manipulations and omissions of the [series’] edit.” Moreover, as Solona Armstrong wrote in a Medium review of the docuseries, “I would summarize the obviously biased message the film sent its audience with one phrase, spoken in the film by Dr. Friedman: ‘You can be deluded that you’re sick’.”

If these claims (about the handling of the stories on Afflicted) are true, then the show’s producers likely thought viewers would be easily persuaded that people are making these illnesses and symptoms up in their heads. Put another way, such misrepresentations are in themselves a larger cultural trope, revealing just how routinely the people suffering these illnesses and symptoms are seen as liars, frauds, and/or emotional manipulators. Also revealing of larger patterns: the significant harassment endured by those portrayed on the documentary (see, for example, Pilar’s story).

Struggles with legitimacy and stigma are also depicted in the award-winning 2017 documentary Unrest by Jennifer Brea. The film’s origins lie in Brea’s difficulty communicating the depth and severity of her symptoms to her doctors before she was diagnosed with chronic fatigue syndrome/myalgic encephalomyelitis. For Brea the camera became a mechanism to communicate her experience and navigate frustrating, at times dismissive, care. (For yet another example of creative attempts to help clinicians understand patient experiences, see designer Katie McCurdy’s visualizations of symptoms and health histories for patients with “rare or mystery” conditions.)

Such struggles with stigma and legitimacy aren’t just an unfortunate side-effect of living with these difficult-to-diagnose and difficult-to-treat illnesses but rather what is most at stake. As one commenter wrote on the PBS webpage for Unrest, “There is an argument about nomenclature and diagnosis, but it’s for another film and another battle. It’s more important to lose the stigma first, because the prejudice of clinicians is what’s killing us, not the name.” These are the stakes behind a qualitative systematic review and thematic analysis underway in the KER Unit (the full protocol has been registered with PROSPERO, CRD42019122506).

Our review explores what we have termed undercared-for chronic suffering: the experiences of patients, clinicians, and caregivers with chronic conditions and/or symptoms that (1) do not lend themselves to clear imaging, measurement, and/or treatment and (2) are characterized by long, expensive, and potentially confusing or conflicting diagnostic journeys. We offer the term undercared-for chronic suffering to bring focus and legitimacy to patients’ experiences with these conditions/symptoms and lessen the focus on their unclear scientific diagnosis.

Our analysis of our included studies is still in progress, but we anticipate that our thematic synthesis will include experiences like the following, which we observed in our preliminary manual searches on the topic:

• patient perceptions of or attitudes toward their conditions, symptoms, and related experiences;
• effects on patients’ lived experience (functionality, self-management, finances/occupation, social relations, etc.);
• clinicians’, patients’, and/or caregivers’ perceptions of, experiences with care (communication, diagnostic process, conflicting/confusing information, continuity and integration issues, feeling doubted/unimportant/dismissed, feeling powerless/frustrated, etc.);
• clinicians’ attitudes toward patients with these symptoms/conditions.

We aim to describe the contributors to patients’ experiences of undercared-for chronic suffering (positive and negative), as well as the experiences of the clinicians who treat and caregivers who care for this patient population. In doing so, we hope to understand the elements of patient support that can mitigate its well-documented propensity for frustrating conversations (and relationships) between patients and clinicians, difficulties with self-management and treatment, and patients’ feeling misunderstood, unimportant, and/or delegitimized.

References

1. https://medium.com/@afflicted/the-truth-behind-netflixs-afflicted-92e92d32cd7c
2. https://medium.com/@solonaarmstrong/afflicted-on-netflix-is-hurting-everyone-not-only-the-chronically-ill-63e21334f919
3. https://medium.com/pictal-health/its-complicated-60b2cb9c2398
4. http://www.pbs.org/independentlens/films/unrest/
5. http://www.crd.york.ac.uk/PROSPERO/display_record.php?ID=CRD42019122506

 

Christina M. LaVecchia, Ph.D., earned her doctorate in rhetoric and composition and is a research fellow in the KER Unit who specializes in qualitative research. She uses her rhetorical training to collaborate on patient-centered research related to patient-clinician communication (particularly rhetorical listening practices) and the social experiences of patients with illness and navigating the power differentials that inflect their care—like those experiencing undercared-for chronic suffering.

 

 

Submitted by Paige Organick

As exemplified with Drew Calver¹, the Texas high school teacher rushed to the hospital for life saving treatment after a heart attack in 2017, our current healthcare system is neither careful nor kind. From the hospital bed, he worried about affording his care, but was reassured his insurance would cover all expenses. Nonetheless, his initial bill totaled $108,951 after insurance, partly because his hospital was not in his employer’s insurance network.

Calver’s case demonstrates part of the high treatment workload patients undergo to afford their care. If they’re lucky enough to be insured, they must do a lot of cognitive work to figure out if their provider is in-network or not. After treatment, patients wage small and numerous battles with insurance to prevent bankruptcy by a bill magnitudes higher than those in similarly developed countries.

Due in part to a complicated patchwork of fragmented insurance and healthcare providers, administrative complexity has made the US the top spender on healthcare in the world with some of the lowest health outcomes. Americans, compared to similarly wealthy and developed countries, have a shorter life expectancy, higher rates of disease, the highest rate of infant mortality, and the lowest chance of making it beyond middle age².

Image from Peterson-Kaiser Health System Tracker

Some of these health outcomes could be improved through Senator Sanders’ proposed Medicare for All act, which would better prioritize preventative care measures. 49% of Americans have employer-insurance⁴, and as they move jobs their insurance changes, then once they hit 65 they move to Medicare. Insurance companies provide treatments rather than continual maintenance of overall health, passing the buck on to the next payer for incentivizing healthy living and preventative care programs. However, under a single-payer system, the government would be greatly incentivized to fund public health and preventative care measures, keeping the population healthier and in less need of healthcare, similar to other Western countries.

Medicare for All would decrease patient’s treatment workloads Under a single-payer system, Calver would not have needed to worry about being in the right hospital, or having the right doctor in the wrong hospital, in order to afford his care. And although Calver had a crushingly high bill, his bill would have been even higher without insurance, as the 29 million uninsured Americans would have faced. When care is this expensive and this administratively complex, navigating care becomes stressful, causing people to either avoid the doctor’s office altogether or to avoid routine care, only seeking care when they need hospitalization or expensive procedures.

However, Medicare for All won’t be a panacea for our healthcare system. Despite Medicare for All increasing access to care, it may restrict certain services and procedures. If 29 million more Americans suddenly accessed healthcare, there would be a shortage limiting access to certain services such as access to doctors and limited supplies of medications. Additionally, Medicare for All would only cover a contested list of “medically necessary” procedures. This list ranges from the obviously important, like breast cancer screenings, to colonoscopies. What it may not include is prescription drugs for fertility, weight loss, or potentially abortions, as they are so hotly contested right now. Calver’s procedure may have been unavailable due to medical shortages, or some aspects may not have been covered.

America is at a crossroads, and how we move forward reveals what we value in healthcare and the treatment of fellow citizens. Our current industrialized healthcare system benefits those with good insurance and who can afford care. These lucky patients enjoy some of the best diagnostic treatment and advanced procedures in the world. While Medicare for All would potentially limit access to some treatments, it overall would bring other benefits that emphasized overall population health, an arguably more careful and kind approach. The passage of Medicare for All would mark a massive shift in America’s values, evolving the rugged individualism America was founded on into making room for a more communal, equality based healthcare system.

¹ “Life Threatening Heart Attack Leaves Teacher with $108,951 Bill”. NPR Morning Edition. https://www.npr.org/sections/health-shots/2018/08/27/640891882/life-threatening-heart-attack-leaves-teacher-with-108-951-bill

² “For Americans Under 50, Stark Findings on Health”. Sabrina Tavernise. The New York Times. https://www.nytimes.com/2013/01/10/health/americans-under-50-fare-poorly-on-health-measures-new-report-says.html

³ “Mortality Rate, Infant (per 1,000 live births)”. The World Bank.  https://data.worldbank.org/indicator/SP.DYN.IMRT.IN

⁴ “Health Insurance Coverage of the Total Population”. Henry J Kaiser Family Foundation. https://www.kff.org/other/state-indicator/total-population/?currentTimeframe=0&sortModel=%7B%22colId%22:%22Location%22,%22sort%22:%22asc%22%7D

Submitted by Paige Organick
Illustrations by Kevin Shaw

Senator Warren and Representative Schakowsky introduced the Affordable Drug Manufacturing Act in December of 2018. This act would require Health and Human Services to publicly manufacture generic drugs if one of the following conditions are met:

• Two or fewer companies produce the drug
• There is a drug shortage
• The price of a drug has created a barrier to patient access.

Should it pass, this bill would be consequential. Currently, 40% of generic medicines are made by just one drug maker. Monopolies like this contribute to soaring drug prices that exclude patients who fill nine out of every ten prescriptions with generics.¹ By breaking the generics monopoly and promoting competition, the act’s intent is to improve the affordability of medicines for most patients, even those still under patent protection.

Out-of-pocket costs are important in making treatment decisions for at least 80% of patients.² By addressing the financial burden of treatments, this bill could support what we at the KER Unit call “minimally disruptive medicine”. Faced with expensive medications, patients, especially those with multiple chronic conditions must choose between buying groceries, paying rent, and purchasing their medications. When they skip their medications, healthcare labels these patients as “noncompliant”. These “noncompliant” patients must then cope with preventable symptoms and complications, the care these require in turn and their costs, and the judgment often dished to them by those who blame them for not taking personal responsibility for their care.

This act, along with other proposals including the Preserve Access to Affordable Generics and Biosimilars Act, are unlikely to pass for many reasons, including the substantial campaign contributions that pharma makes to regulators.³ Yet, these initiatives may slowly erode the fabricated consensus that market forces alone can solve the problem of drug affordability, and re-energize the role that regulation can play in creating affordable healthcare.

¹ Why pharma companies are bowing out of generics”. Dan Gorenstein. Marketplace on NPR. https://www.marketplace.org/2017/08/02/health-care/drug-prices-why-pharma-companies-are-bowing-out-generics

² “Talking About Costs of Care During Shared Decision Making – Part One: The Problem”. Alan Balch. Journal of Clinical Pathways. https://www.journalofclinicalpathways.com/article/talking-about-costs-care-during-shared-decision-making-part-one-problem

³ “Database Details Drugmakers’ Contributions to Congress”. Emmarie Huetteman and Sydney Lupkin. CNN News. https://www.cnn.com/2018/10/25/health/drugmakers-congress-contributions-partner/index.html

This is a reprint of a previous publication held on guidelines.gov. We will work to update information within in coming blog posts.

By: Aaron L. Leppin, MD and Victor M. Montori, MD, MSc

Currently, half of all American adults have a chronic disease and 1 in 4 live with the burdens of multiple, concurrently active chronic conditions (1). The population is aging and the incidence and prevalence of chronic disease are increasing. As such, typical patients with any chronic condition are increasingly likely to be patients with multiple chronic conditions (MCC). Patients with MCC are a priority population and Federal stakeholders have called for new and effective ways of meeting their healthcare needs (2,3). Optimizing clinical practice guidelines for the care of patients with MCC could play a key role in this regard.

The Dilemma for Clinical Practice Guidelines

Clinical practice guidelines, for scientific and practical reasons, orient themselves around the management of specific diseases or clinical circumstances. They provide condition-specific guidance on how one would optimally manage a disease if and when that condition existed in a vacuum, independent of any interacting or intervening factors. This understanding is necessary, but, in many cases, does not directly or reliably apply to the care of an individual person—especially a person with MCC (4).

Although all patients exist in unique biopsychosocial contexts, the care of patients with MCC is particularly complicated by the interaction of multiple, concurrently active chronic conditions. When individual, disease-specific treatment strategies are pursued for these patients—indiscriminately and in parallel—the resulting care can be ineffective, impractical, and unsafe (5,6). Advocates of patient- or person-centered care recognize that the best way to manage complex patients is with comprehensive and flexible treatment strategies that can adapt to the nuances of individual contexts.

Guideline developers who desire to incorporate and encourage this understanding face a key dilemma. Person-centered disease management strategies, by their very nature, lack the disease specificity to fit into traditional, disease-oriented practice guidelines. The inability of guidelines to incorporate person-centered recommendations accentuates the significance of this dilemma by ultimately limiting the guidelines’ usefulness.

Consider Stanford’s Chronic Disease Self-Management Program (CDSMP), for example. The CDSMP is a group-based, disease-agnostic self-management program designed to generically enhance patients’ capacity to deal with the burdens of chronic disease. Participants select which self-management strategies they will use from a menu of options and according to their preferences. They also prioritize the conditions or issues they will seek to address based on their own perceptions of context, need, and ability. The body of evidence related to the CDSMP suggests that it improves patient-reported outcomes regardless of patient diagnosis (7,8). As such, CDSMP implementation is a key priority of the Department of Health and Human Services’ effort to optimize the care of patients with MCC (2) and the Centers for Disease Control and Prevention has recommended it become part of routine care for all patients with any chronic condition (8).

Arguably, the CDSMP should be a component of clinical practice guidelines for every chronic condition, and yet it appears in none. One reason for this, paradoxically, is that person-centered approaches to chronic disease management are rarely the best option for optimal management of any single disease if and when that disease existed in a vacuum. The CDSMP is not the most efficacious treatment for depression, for example, nor is it the most efficacious treatment for diabetes or arthritis or cancer. But what is the single best intervention for a patient with depression, diabetes, arthritis, and cancer? The answer to this question is not currently known, but to a patient living in that context—and to the clinician caring for him or her—it remains the most important question to have answered.

The Opportunity for Person-centered Guidelines

Some guideline developers have succeeded in incorporating person-centered recommendations into clinical practice guidelines. Examples include advocating for the use of clinical judgment in formulating treatment plans and for using shared decision-making strategies that incorporate patient values, preferences, and priorities. These recommendations are useful but, in contrast to their more traditional and disease-focused counterparts, they encourage things that are often difficult to identify, operationalize, and enact—such as attitudes or concepts. The ultimate and practical value of clinical practice guidelines rests in their ability to provide direction on what to do (and, implicitly, measure). This is straightforward in some clinical circumstances, but in the setting of chronic disease—and especially among patients with MCC—it is rarely obvious or clearly actionable. The key challenge and opportunity for clinical practice guidelines for chronic disease management, then, is to identify a mechanism for translating person-centered intentions into clearly described and actionable clinical activities.

Minimally Disruptive Medicine as a Proposed Solution

In an effort to guide understanding in this regard, our research team at Mayo Clinic has spent the last 5 years developing a patient-centered and context-sensitive model of care called minimally disruptive medicine (MDM) (9). Our particular contributions add to and draw from those of the International Minimally Disruptive Medicine Workgroup (www.minimallydisruptivemedicine.org ) and are informed by the synthesis of insights from our own internally and externally funded research projects, the engagement of key and diverse stakeholders, and ongoing and reflective transdisciplinary discourse.

In summary, and in the simplest sense, MDM describes patient context as a balance between workload and capacity. Workload comprises all the things patients must do (physically, cognitively, or otherwise) to be well and to fulfill meaningful goals for and roles in life and health. In the complex circumstances of individual patients with MCC, the unique compositions of workload will vary—inevitably including contributors from health, healthcare, and life—but the resulting construct emerges as an experience that is consistent and relatable—namely, a burden. Capacity comprises all the resources—physical, mental, social, financial, personal, and environmental—that patients with MCC can mobilize to carry out the work of life, health, and healthcare, and, in turn, counteract or avoid the experience of burden.

For patients with MCC, capacity is always at risk of being overwhelmed. As the limits of capacity are breeched, patients begin to experience care as a disruption to their lives. They may begin to haphazardly prioritize aspects of the workload that are feasible, but of little value. In these cases, patients are prone to clinical and personal decompensation. It stands to reason, then, that for health care to be effective for patients with MCC, special efforts must be taken to augment the balance of workload and capacity so that it favors the patient (10). The advantage of this conceptualization—which itself derives from a synthesis of mathematical, psychological, and social underpinnings—is that it serves to make sense of patient context (11). For guideline developers, this also begins to overcome the challenge of translating person-centered intentions into clinically actionable recommendations. Such recommendations are necessary to facilitate the development of person-centered quality metrics that are more appropriate for patients with MCC.

Recommendations for Consideration

To extend the applicability of clinical practice guidelines to patients with MCC, we present three strategies that are consonant with a person-centered approach based in MDM. In order of increasing complexity and uncertainty, they are:

1. The MCC caveat: a simple statement that acknowledges the limitations of disease-centered treatment recommendations for patients with MCC. This statement should serve to reduce clinicians’ expectation that following a recommendation—especially when it is not strong—will do more good than harm. It should also alert policy-makers to the potential disservice done to patients with MCC when disease-centered recommendations are linked to quality metrics that guide incentives and practice.
2. The MCC context assessment: an explicit recommendation for the assessment of patient context before applying disease-centered treatment recommendations. These assessments should include an evaluation of patient workload and capacity. As an example of a workload assessment, Mair and May have proposed a question as simple as “Can you really do what I am asking you to do?” (12). Ideally, this question should follow a careful consideration of and deliberation about what should be done.
3. The MCC treatment optimization: a proactive adaptation of the disease-centered treatment recommendation based on understandings elicited from the context assessment. In accordance with a MDM approach, this amounts to enacting efforts to support patient capacity to implement essential care and/or removing non-essential care and tailoring treatment approaches to something more feasible and effective. For example, a patient-centered guideline for diabetes management in the context of MCC might read:

If the MCC context assessment suggests that optimal diabetes-oriented care is likely to be ineffective or impractical for the patient at this time, the clinician—in partnership with the patient—should look for opportunities to remove low value and excessively burdensome care (including unnecessary testing and appointments), regardless of indication. If no such care is identified or if its removal does not sufficiently change the patient’s context, patient-centered adaptations of the diabetes treatment strategy outlined here may be pursued. In order to do this, the clinician should first partner with the patient to assess the relative value of optimal diabetes-oriented care in achieving important patient goals. If this value is judged to be low, the clinician and patient can consider temporarily modifying or suspending diabetes-oriented treatment targets (e.g., HbA1c targets) and/or changing management strategies (e.g., by changing from insulin to an oral antidiabetic medication) to better fit patient preference and capacity. Alternatively—and if optimal diabetes-oriented care is essential for achieving important patient goals—supportive efforts should be taken to enhance patients’ capacity to fit this care into their lives (e.g., by connecting patients to community-based resources that can help with transportation, prescription refills, self-care).

A key and inherent limitation of person-centered clinical practice guidelines is that they will never be able to provide patient-specific recommendations for how to adapt disease-centered guidelines. What they can do is provide conceptual direction on how such adaptations should be made. MDM may provide a framework for orienting this guidance and for making sense of the application of patient-centered clinical wisdom. To that end, we have proposed and organized a flexible toolbox of interventions that clinicians can use to match their efforts to the unique contexts of patients with MCC (11).

Conclusion

Certainly, guidelines must continue to communicate what the best science supports for optimal management of a given disease if and when that condition existed in a vacuum. As the prevalence of MCC rises however they must also provide specific, actionable, and patient-centered guidance on what is practically feasible, technically safe, and ethically appropriate in each setting. Traditionally, professional societies and guideline panels have focused on the former. America needs bold and innovative guideline developers willing to focus on the latter. When guidelines change, policy and practice can follow. To the extent this occurs, patients with MCC could be the first to reap the benefits.

Authors

Aaron L. Leppin, MD
Assistant Professor of Health Services Research
Knowledge and Evaluation Research Unit
Mayo Clinic
Rochester, Minnesota

Victor M. Montori, MD, MSc
Professor of Medicine
Knowledge and Evaluation Research Unit
Mayo Clinic
Rochester, Minnesota

Disclaimer

The views and opinions expressed are those of the author and do not necessarily state or reflect those of the National Guideline Clearinghouse™ (NGC), the Agency for Healthcare Research and Quality (AHRQ), or its contractor ECRI Institute.

Potential Conflicts of Interest

Dr. Leppin states the Mayo Clinic research was supported by funding from NIH and AHRQ. No support was received from industry of any kind. Both authors declare no financial or personal conflicts of interest with respect to this commentary.

References

1. Ward BW, Schiller JS, Goodman RA. Multiple chronic conditions among US adults: a 2012 update. Prev Chronic Dis. 2014;11:E62.
2. Department of Health and Human Services. Multiple chronic conditions—A strategic framework: Optimum health and quality of life for individuals with multiple chronic conditions. Washington (DC): Department of Health and Human Services; 2010.
3. Parekh AK, Kronick R, Tavenner M. Optimizing health for persons with multiple chronic conditions. JAMA. 2014;312(12):1199-200.
4. Wyatt KD, Stuart LM, Brito JP, et al. Out of context: clinical practice guidelines and patients with multiple chronic conditions: a systematic review. Med Care. 2014 Mar;52(Suppl 3):S92-100.
5. Boyd CM, Darer J, Boult C, Fried LP, Boult L, Wu AW. Clinical practice guidelines and quality of care for older patients with multiple comorbid diseases: implications for pay for performance. JAMA. 2005;294(6):716-24.
6. Dumbreck S, Flynn A, Nairn M, et al. Drug-disease and drug-drug interactions: systematic examination of recommendations in 12 UK national clinical guidelines. BMJ. 2015;350:h949.
7. Ory MG, Ahn S, Jiang L, et al. Successes of a national study of the Chronic Disease Self-Management Program: meeting the triple aim of health care reform. Med Care. 2013 Nov;51(11):992-8.
8. Brady TJ, Murphy L, Beauchesne D, et al. Sorting through the evidence for the Arthritis Self-Management Program and the Chronic Disease Self-Management Program, executive summary of ASMP/CDSMP meta-analyses. Atlanta (GA): Centers for Disease Control and Prevention; 2011 May. 30 p.
9. May C, Montori VM, Mair FS. We need minimally disruptive medicine. BMJ. 2009;339:b2803.
10. Leppin AL, Gionfriddo MR, Kessler M, et al. Preventing 30-day hospital readmissions: a systematic review and meta-analysis of randomized trials. JAMA Intern Med. 2014;174(7):1095-107.
11. Leppin AL, Montori VM, Gionfriddo MR. Minimally disruptive medicine: a pragmatically comprehensive model for delivering care to patients with multiple chronic conditions. Healthcare. 2015(3):50-63.
12. Mair FS, May CR. Thinking about the burden of treatment. BMJ. 2014;349:g6680.