Care That Fits Blog

Windowlight Portraiture

Windows as a source of light for portraits have been used for decades before artificial sources of light were discovered. According to Arthur Hammond, amateur and professional photographers need only two things to light a portrait: a window and a reflector. Although window light limits options in portrait photography compared to artificial lights it gives ample room for experimentation for amateur photographers. A white reflector placed to reflect light into the darker side of the subject’s face, will even the contrast. Shutter speeds may be slower than normal, requiring the use of a tripod, but the lighting will be beautifully soft and rich.

The best time to take window light portrait is considered to be early hours of the day and late hours of afternoon when light is more intense on the window. Curtains, reflectors, and intensity reducing shields are used to give soft light. While mirrors and glasses can be used for high key lighting. At times colored glasses, filters and reflecting objects can be used to give the portrait desired color effects. The composition of shadows and soft light gives window light portraits a distinct effect different from portraits made from artificial lights.

From Wikipedia article which is released under the Creative Commons Attribution-Share-Alike License 3.0.

Why does everything feel so hard right now?

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.

Values-Based Care & Minimally Disruptive Medicine


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 and I can share what I learned, and see if the ICAN might be a fit in your clinic!

Helping Older Adults Deprescribe Unsafe Medications

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.

Purposeful SDM: Our new model of shared decision making

There are many situations in which patients and clinicians need to and are making decisions together, arguably these are all instances of Shared Decision Making (SDM). The ways that patients and clinicians make decisions should change according to the problem that is the reason why decisions are being made. For example, how patients and clinicians choose whether or not to take statins to potentially reduce 10-year risk of heart attack may be different from how management decisions are made for a patient living with multiple chronic conditions who is experiencing multiple detrimental life changes. In the first instance patient and clinician might use a weighing approach to weigh the pros and cons of known alternatives (to take or not statins), while in the second they might use a problem-solving approach to uncover possible solutions and judge how they would work in the patient’s life.

In a paper published in the current issue of Patient Education and Counseling, we present the Purposeful SDM model. Purposeful SDM distinguishes different kinds of situations where patients and clinicians need to work out what to do, and different SDM methods for addressing these problems. The model suggests that there is no one way to do SDM, rather we can think of SDM as a range of methods that vary according the problem that the patient is experiencing. I.e. SDM changes according to its purpose.

Kinds of situations that require patients/family and their clinicians to make decisions together and pertinent methods of SDM.

Purposeful SDM extends the predominant focus in SDM research, practice, training, and promotion on the need to involve patients in decision making. The model draws attention to the problem that is the reason why patients and clinicians are involved in making decisions in the first place and the appropriate method of addressing these problems together. The Purposeful SDM model may help explain why many clinicians don’t see current models of SDM as being relevant to the problems that they are dealing with in their practice.

We believe that Purposeful SDM has important implications for what SDM interventions, such as decision aids, should be designed to do and what should be measured when evaluating SDM. Current measures are mostly intended for situations where SDM is used to choose between alternatives. This is only one of the situations and methods that Purposeful SDM describes.

Purposeful SDM: A problem-based approach to caring for patients with shared decision making is available through open access until October 15, 2019.

Authors: Ian G. Hargraves, Victor M. Montori, Juan P. Brito, Marleen Kunneman, Kevin Shaw, Christina LaVecchia, Michael Wilson, Laura Walker, Bjorg Thorsteinsdottir
Download the Purposeful SDM poster presented at ISDM 2019.

Reflecting on and making sense of shared decision making

Measuring shared decision making (SDM) is challenging. Previous research showed discrepancies between observer-based and self-reported scores. Patient-reported SDM scores are usually higher and tend to have ceiling effects (high scores without much variance), possibly due to halo effects (difficulty to disentangle SDM from overall experience of care).

We wanted to test whether introducing a pause (“stop-and-think”) before filling in SDM scores would slow patients down and encourage them to reflect above and beyond their assessment of general satisfaction with the clinician or the visit. Also, we wanted to assess how much intellectual, emotional, or practical sense the care plan made to patients.

In two studies, we asked a diverse group of patients to reflect on their care before completing the 3-item CollaboRATE SDM measure. In the first study, adding the reflection questions lowered the CollaboRATE score (“less” SDM) and reduced the proportion of patients giving the maximum scores. The differences, while tantalizing in magnitude and direction, were not significant. In the second study, the reflection questions did not change the distribution of CollaboRATE scores or top scores.

In general, patients indicated high scores on the sense of their care plan. However, this ‘sense’ was only weakly correlated with the total CollaboRATE scores. One of every two patients indicated their care plan made less than ideal sense, yet they still gave maximum scores on the CollaboRATE.

Our studies showed limited and somewhat inconsistent evidence that reflection-before-quantification interventions may improve the performance of patient-reported SDM measures. Also, we showed that it is conceivable that scoring high on the “technical steps of SDM” as assessed by SDM measures, may not necessarily lead to a decision that makes sense and vice versa.

The full paper was published in Health Expectations and can be found here.

This study was part of the Fostering Fit by Recognizing Opportunity STudy (FROST) program, and has been made possible by a Mapping the Landscape, Journeying Together grant from the Arnold P. Gold Foundation Research Institute.

Submitted by: Marleen Kunneman, Christina LaVecchia, Naykky Singh Ospina, Abd Moain Abu Dabrh, Emma Behnken, Patrick Wilson, Megan Branda, Ian Hargraves, Kathleen Yost, Richard Frankel, Victor M. Montori

Shared Decision Making with patients who have Limited English Proficiency

Submitted by Amelia Barwise

The importance of shared decision making (SDM) is widely recognized and its practice is encouraged. However, some people face major challenges as they are invited to participate in SDM, and may not recognize or understand the concept of SDM within healthcare. There is a limited amount of literature about SDM in patients who have limited English proficiency (LEP) – defined as “not speaking English as a primary language and potentially having a limited ability to read, speak, write, or understand English.” We do know, however, that older age, poor health literacy, and language barriers are obstacles to using SDM. LEP often occurs together with low health literacy and cultural obstacles; this triad is aptly referred to as the “triple threat.”

The basic tenets of SDM – sharing of information and preferences, consensus building and reaching agreement – may be foreign to many. Here, we examine the steps involved in SDM, and clarify the potential issues that may arise in the context of people with LEP.

Process of information sharing

Those with LEP may have a different worldview with cultural norms that diverge substantially from Western norms. Some people with LEP believe, either for faith-based or cultural reasons, in non-disclosure and deliberately hide a poor diagnosis, poor prognosis, and alternative treatment options from their loved ones who are patients. This is not done with ill-intent but to protect their loved ones from experiencing potential hopelessness and depression from learning of impending death or a non-curative condition. LEP patients may also be more likely to use alternative therapies and be reluctant to share this information as they sense that clinicians may not approve. Those with LEP are more likely to experience bias or perceive they have experienced discrimination, and therefore have less trust in their clinicians inhibiting information sharing. Clinicians in turn may share less information with those who have LEP due to a variety of factors including lack of time, interpreter availability, and concerns about comprehension.

Deliberation and Decision making

The importance of family in decision making among those with LEP is also key, with large groups of relatives often involved in decisions that for most US families would involve a patient acting alone or with a surrogate or with very close family members only. The collectivist approach to making decisions is at risk of impeding deliberation and shared decision making as the needs, preferences, and understanding of what is best for the patient as voiced by the patient may get crowded out by the many voices wanting to be heard.

Decision making models

The US promotes patient autonomy (with designated surrogates as needed) as vital in all decision making and a driver of shared decision making, while other cultures support a paternalistic model with the clinicians considered expert and driving the decision making process.

Decision aids developed for specific populations may help bridge the gap between inadequate communication and improved decision making. Decision aids adapted from English to other languages require more than translation to ensure their usability and effectiveness; an enormous challenge. Interpreters will need to be involved in the process of developing and implementing tools as they will be central to their uptake and effectiveness in practice. There remain huge challenges to supporting and measuring SDM even with isolated language barriers unrelated to other health literacy and cultural differences.

The purpose of this commentary is not to stereotype groups into those “capable” of SDM and those that are not. The purpose of this commentary is to draw attention to a wider range of cultural approaches to decision making in healthcare. The healthcare team should assess each patient’s interest in being part of a SDM process. For some with LEP, SDM will appeal and help them make informed and meaningful decisions about their healthcare. For others it will be a baffling and potentially distressing encounter. We must not coerce patients into “complying” with Western decision-making approaches when seeking care. In respecting patients, we need to consider flexible and culturally adept decision-making processes that acknowledge the fundamental role family and other factors play in clinical decision making.

Clinicians should be mindful of the other more pressing barriers to decision making that exist for those with LEP and accept other potentially unfamiliar approaches to providing compassionate and culturally sensitive care. It may help to exercise some cultural humility, accepting decisions that clash with usual expectations and being skeptical of SDM as the preferred way to reach decisions with patients. For some with LEP there are limits to the practical use of SDM and requiring them to conform to SDM is unrealistic and may be counter-productive and uncaring.

Amelia Barwise is an assistant Professor of Medicine within the Division of Pulmonary and Critical Care Medicine at Mayo Clinic. She is currently working on her PhD focused on end of life care among patients with limited English proficiency.

Supporting Implementation of Shared Decision Making for Statin Therapy Initiation in Primary Care

Submitted by Aaron Leppin

Decisions on whether to initiate statin therapy for cardiovascular risk reduction should be based on individual patient risk and occur in the context of a shared decision making (SDM) conversation. The Statin Choice Conversation Aid is a web-based tool that incorporates patient variables to calculate and present an individual-level risk. It has been shown in multiple randomized trials to facilitate SDM when used in the clinical encounter.

Despite being freely available and well accepted by patients and clinicians, the Statin Choice tool had not been institutionally adopted and integrated into the clinical work flow at any site prior to 2014. This lack of implementation was and is representative of many SDM interventions which, in routine settings, are often not prioritized. The reasons for this are complex but, at least at some level, result from the competing priorities healthcare systems must address and the often-fixed resources they have to do this work. In this context, it stands to reason that health systems and other settings will be more likely to undertake the work of implementing SDM when it is understood clearly to be low.  Unfortunately, in most cases, the work of implementing any individual SDM intervention is poorly understood at the outset. The most effective and efficient strategies for facilitating implementation are often even more ambiguous.

In this study, we sought to address these foundational problems by both characterizing the work of implementing the Statin Choice tool and identifying the most useful strategies for doing this work. Specifically, we recruited 3 health systems in the Mayo Clinic Care Network and carefully observed and tracked their efforts to integrate the tool into their EHR and into routine use across all of primary care over an 18-month period.

We used Normalization Process Theory, an implementation theory that organizes the types of work required to embed new practices, to describe the implementation process at each site. We collected multiple types of data from many sources to track the success (or outcomes) of implementation as well. By carefully examining the things teams did (e.g. the strategies they used) to do the work of implementation and the results of this effort (e.g. the outcomes the work achieved), we were able to identify the most useful strategies for making SDM implementation happen. We were also able to gain a clear understanding of the types and amount of work that would be required.

With this knowledge, we were able to develop a multi-component toolkit that could be provided to other settings to support implementation of the tool. As part of this toolkit, we were also able to provide a brief organizational readiness and context assessment. More clearly, because we had observed the implementation process, we were able to provide an assessment that would guide clinical stakeholders in thinking about the specific things they would need to be able to do (e.g. integrate into the record, train clinicians), the ways in which these things can be done (e.g. workflow examples, training methods), and whether the provided toolkit resources (e.g. EHR code language, implementation team manuals, educational templates) was sufficient support to justify going forward.

Importantly, our study identified several strategies that were judged to be of low value in facilitating implementation. This knowledge was critical to the development of the toolkit and to stakeholders as it allowed us to avoid inclusion of things that will only cause more work for clinical teams with little to no benefit.

The conceptual advancements of our research to the field of implementation science include (1) a theoretical connection between the work that stakeholders do to implement SDM and the outcomes this achieves and (2) an appreciation of the need to develop useful toolkits that can support clinical settings in understanding and doing the work of implementation.

It is not our impression, however, that the toolkit we developed will be necessarily appropriate for other SDM interventions. Rather, we believe our research should be used as a template that can be replicated by other teams in other settings and for other interventions.

The full paper was published in BMC Health Services Research and can be found here. This study was made possible by a CTSA Grant (UL1 TR000135) from the National Center for Advancing Translational Sciences (NCATS), a component of the National Institutes of Health (NIH).

Undercared-for Chronic Suffering: Experiences with Medically Unexplained and Contested Illnesses and Symptoms

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.




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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.