Minnesota Shared Decision Making Collaborative

Written by: Annie LeBlanc, PhD, Research Fellow with the Knowledge and Encounter Research Unit at Mayo Clinic

The Minnesota Shared Decision Making Collaborative hosted, in collaboration with Health Partners, a one-day conference on Optimizing Shared Decision Making in Health Care. Their effort to gather healthcare providers, patients and policy makers interested in Shared Decision Making was well received as there were around 70 attendees.

Internationally recognized speakers and local experts shared their experience on Shared Decision Making and its implementation in practices and then engaged the audience in discussion around the place and future of Shared Decision Making in Minnesota’s communities.

Their take home message:

Practice: Make Shared Decision Making a habit by practicing everyday;

Facilitate: Facilitate Shared Decision Making by (i) making explicit the decision to be made, (ii) providing balanced information about options, (iii) asking patients what matters most.

Process:  The implementation of Shared Decision Making, facilitated by patient Decision aids, in both primary and specialty may be at least a partial solution to the problems of poor decision  quality and unwanted practice variation in the United States.

Succeed. A daily, communitiy-wide effort is our best chance to make Shared Decision Making a National success

Educational resources for patients

Mayo Clinic patients have access to a broad array of healthcare education and counseling services through the Barbara Woodward Lips Patient Education Center, which enables them to be partners in their health care.   The Center makes efforts to reach diverse audiences, as seen in its new design for teen patient education material. 

In this video, patients and staff discuss the Barbara Woodward Lips Patient Education Center:

The value of an unhurried conversation

by Victor Montori, MD (Wiser Choices Program)

As we reflect on the present and future of healthcare, it is key to consider the value of an unhurried conversation.

At the Mayo Center for Innovation 2009 Symposium, Maggie Breslin made a compelling case to focus on conversations as a key strategy to improve healthcare.  Watch her inspiring and inspired proposition here.

Becca Camp, a visiting student at our KER UNIT, recently wrote a blog post of an experience at Mayo Clinic she was privileged to witness.  In it she noted the relationship between an unhurried conversation and the opportunity to contextualize care to a patient’s specific situation, a requirement of both evidence-based practice and patient-centered care.  A recent rigorous and careful study documented how failure to pay attention to context can lead to poor quality care.

Don Berwick in his address to the Yale Medical School 2010 Graduating Address, he noted the critical importance of patient-centered care and the role that clinicians can play in treating patients with respect and humanity, urging them to

…recover, embrace, and treasure the memory of your shared, frail humanity – of the dignity in each and every soul.

Meantime, we seek to measure value in healthcare and we find it difficult to articulate how to capture the value of the unhurried conversation.  How do we know that our systems promote these conversations?  Should we protect these, and if so how, when economic considerations (payment, demand, access) threaten them?

The unhurried conversation, a key component of the Mayo Model of Care, should be the focus of intense investigation.  How much time is necessary to achieve this experience?  How should care professionals be trained to participate?  How do new requirements for healthcare provision affect these?

I believe it will be up to patients — thru a strong patient movement — to make sure the unhurried conversation remains a possibility as healthcare changes.  And it will be up to us to provide the resources and knowhow to realize that possibility.

My life as a type I diabetic

“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

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

 

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

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!

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.