MDM BLOG

“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. 

Submitted by Jason Soyring

The Dan Abraham Healthy Living Center (DAHLC) hosts two residents electing to participate in the Internal Medicine Rotation at Mayo Clinic.  These residents partake in a 3 1/2 day health and wellness rotation that includes an immersive, hands-on experience into the programs and services that are available to all employees, volunteers, retirees, students, and patients eligible for membership. Not only do the residents acquire an enhanced understanding of how the facility can be leveraged to assist in improving their patients¹ health, but how they can utilize the programs and services to improve their personal health and well-being.

A respectable portion of the rotation provides an extensive look into wellness coaching and communication skills.  In addition, the residents have an opportunity to participate in 3-4 wellness coaching sessions to work on areas of change in their own lives. Again, the purpose of this experience is to allow the resident an opportunity to comprehend how wellness coaching can be of benefit to them and their patients in regards to behavior change.  The feedback around this portion of the experience has been incredibly positive thus far.

Residents are introduced to the Mayo Clinic Wellness Coaching Program¹s 5-E Model and how the different coaching concepts and communication strategies outlined in the model are used to help move clients closer to their health and wellness goals.  These strategies are also introduced in the context of a provider/patient interaction.  This is where Minimally Disruptive Medicine (MDM) and the ICAN Tool come into play. Residents are asked to create a common, but complex patient scenario to bring to one of their peer coaching sessions.  They are then asked to role play the patient and to fill out the ICAN Tool accordingly.  This activity gives the resident an opportunity to understand more deeply the pitfalls of patient capacity and the true burden of treatment and disease.  Each resident plays the patient role and the provider role as part of the session.

DAHLC resident rotations are offered on an ongoing basis and will be available to Internal Medicine residents throughout 2016.

Recently Victor Montori told his story to Kerri Sparling @six until me.  Read about his journey at http://sixuntilme.com/wp/2015/11/10/guest-post-diabetes-research-evolution-toward-patient-revolution/

We are excited to announce to the Minimally Disruptive Medicine community that the first tool developed to support MDM practice, ICAN, is now available for download.

ICAN is a Discussion Aid for clinicians and other health professionals to use together in visits with their patients to better understand their patients’ capacity and treatment burden. ICAN was developed using a rigorous, user-centered design process that included observations and prototyping in a range of settings with a variety of health professionals (primary care clinicians, specialists, nurses, wellness coaches, and community health workers), making its use broadly applicable. We hope you’ll visit the page (minimallydisruptivemedicine.org/ican/) to learn more about ICAN and to download the tool to try in practice.

By Aaron Leppin

Just last week I had the privilege of attending the NIH’ 5^th annual Training Institute for the Dissemination and Implementation of Research in Health (hyperlink). The objective of this program is to train and develop a cohort of researchers with expertise in promoting and evaluating processes that translate evidence into practice.

Consonant with an MDM-based approach to care, the desire of implementation science is to ensure that the safest and most effective care is delivered to patients reliably. Traditionally, this field has focused its efforts on overcoming the underuse of evidence-based interventions. We now realize, however, that many interventions are implemented in practice that are of low or no value. What has become increasingly clear to me in my own research, however, is that many interventions become less effective and/or fail to achieve their full impact as a result of the way they are implemented. This idea, termed “mis-implementation,” is related to but distinct from the misuse of medical interventions.

In 2014, Prasad and Ioannidis outlined the evidence-based rationale for “de-implementing” contradicted, unproven, and aspiring healthcare practices (Imp Sci. 2014; 9:1) (hyperlink). This paper has been well received by the implementation science community, yet no clear and actionable guidance exists for practice-based efforts to de-implement interventions or, for that matter, to avoid mis-implementation entirely.

I am struck by the collective capacity of the MDM community to guide this emerging science. How does our expertise in evidence-based medicine, over-medicalization, and implementation science coalesce in this space? I have my ideas but am interested in others. What are examples of mis-implementation that you have experienced? How were you able (or unable) to overcome these challenges? How have you de-implemented ineffective interventions?

Originally Published in Inside Mayo Clinic Research on Aug. 14, 2015 

By: Jessica Ancker and Holly Witteman

It’s no secret that it’s a lot of work to be sick. Being diagnosed with a serious illness can open the door to scheduling extra doctor’s appointments, researching medical options, taking medications, investigating insurance benefits, and even changing what you eat and drink.
In our research project, we found that there is also another type of work involved in living with chronic illness. People managing their health also need to manage their medical records. This means doing things like transferring information from doctor to doctor, tracking information about treatments and hospitalizations, and correcting mistakes in records. We called this type of work “invisible” because although it takes a lot of time and effort and is an important step in getting good medical care, for the most part, even patients’ own doctors and nurses may not be aware of the work that patients must put into these tasks.
We interviewed 22 people in New York City, each of whom had at least 2 chronic illnesses (including diabetes, chronic pain, depression, HIV, hepatitis C, and a wide range of other conditions). Because of the complexity of their medical conditions, these people saw an average of 5 different doctors.
These interviews showed that transferring patient information from organization to organization was extremely important. One man told us that his surgery had to be canceled because laboratory test results from his primary care doctor didn’t get delivered to the surgeon on time. Another told us that one of her medications was discontinued because the insurance company said the physician had provided insufficient information about her condition.
But what to do to prevent these problems in current systems was somewhat less clear.
We found that people had different approaches to the challenge of getting their information moving across institutional boundaries. Some patients (especially those who had had bad experiences in the past) took a very active role in obtaining copies of their records, test results, and other information, and sharing it with all their doctors. Other patients said that they expected the healthcare system to take care of this task for them. “They’re supposed to have all the information. They’re supposed to look it up,” said one person.
When patients took the lead in transferring their own medical records, we found that they approached the problem creatively, using a variety of solutions. Some of them memorized key pieces of information. Some of them kept an electronic spreadsheet that they updated every time they saw their doctor. Others tracked key information (like their medication list) through handwritten notes. However, one problem we discovered was that when patients track data about their health, physicians might not really trust that patient-collected data. Doctors we interviewed in our study said they were more likely to trust information provided directly by a doctor or by an electronic tracking device such as a blood pressure monitor.
Another issue we discovered was that patients were making judgments about what information to share, and those judgments were not always the same as what the doctors wanted. For example, patients didn’t bother sharing information that they thought was irrelevant (such as one woman who thought that the treatment she received from her dermatologist was unlikely to be of interest to her primary care doctor). Patients also didn’t bother sharing information if they thought the doctors were already in contact with each other (such as several patients who believed – mistakenly – that doctors at 2 different institutions could see each other’s electronic medical records). Occasionally, we encountered a patient who had privacy concerns about sharing information, but this was not very common among the people we interviewed.
Finally, we found that patients were putting in a tremendous amount of time and effort getting information transferred from one setting to another or correcting mistakes in their records. For example, one man used an electronic account to log into his own medical record and found a mistake. When he tried to correct that information, he was referred from a technical support phone line to a doctor’s front desk staff back to a technical support email address without being able to get the problem fixed. Another one received a home medical device without any instructions for use, and contacted the manufacturer, the insurance company, and 2 different doctors’ offices without success. Several people had lengthy stories about coping with insurance company denials of coverage or other problems.
After these interviews, it is clear that this burden of information management is an additional problem for people with chronic disease to deal with. In our paper, The Invisible Work of Personal Health Information Management Among People With Multiple Chronic Conditions: Qualitative Interview Study Among Patients and Providers, we called this a “systematically regressive tax on illness.”
We think that there’s a role for information technology to help reduce this burden. One solution could be health information exchange technology, which is designed for health care professionals to exchange patient records. Another could be the personal health record, which is designed for patients to keep and manage their own medical information. The first can be thought of as a doctor-focused solution, the second is a patient-focused solution. We think both will be needed in the future so that sharing information is easy and seamless, so that physicians can have confidence in patients’ information, and so that patients who want to do so can take an active role in managing and checking their own data. It will be important to make sure that these kinds of systems are designed for the ways that patients and health care professionals want to manage this kind of information. By designing systems that truly work for the people who will use them, we can reduce the additional burden of invisible work that goes along with living with chronic disease.

Jessica Ancker is an Associate Professor of Healthcare Policy and Research, Healthcare Policy and Research, Weill Cornell Medical College.  Jessica’s research focuses on the use of health IT by patients and providers, effects on comprehension and decisions, and effects on healthcare quality.

Holly Witteman is an Assistant Professor, Tenure Stream, Department of Family and Emergency Medicine; Office of Education and Continuing Professional Development, Faculty of Medicine, Université Laval, Quebec City, Quebec, Canada.  Holly specializes in the study of interactive media for health communication and decision making, focusing on contexts that require communicating numerical data, interpreting risk information, and trading off risks and benefits.

Living with a long term condition is hard work.  No-one would argue that coping with chronic pain, breathlessness or fatigue isn’t difficult, nor that health services and professionals shouldn’t do what they can to try and relieve these symptoms.  The benefits of medication, surgery and rehabilitation are undeniable; they save lives and reduce symptoms for millions.  But in the search for cures, have we underestimated the costs and disruptions that treatments generate for patients? And when patients ‘fail’ to follow health professionals’ recommendations, why do we assume that the problem lies with the patients and not the treatments? These are important questions that the Minimally Disruptive Medicine movement and our recent review paper seek to address.

We systematically reviewed the qualitative literature on treatment burden and identified a total of 11 papers which investigated patients’ (and sometimes also families’) perspectives of treatment burden; what it felt like to live day-after-day with often complex treatment regimes, the negative impacts they experienced  and how they tried to minimise these.  The papers we reviewed provided an international perspective and included participants aged 8-96 with a range of long term health conditions (affecting the cardiovascular, respiratory, digestive, urinary, endocrine, and neurological systems) which varied in terms of the severity, criticality and impact of both the disease and the treatment.

We identified eight classes of treatment generated disruptions : physical symptoms and side-effects; negative emotions; stigma and identify disruption; loss of meaningful activities living with uncertainty; loss of freedom and independence; feeling isolated and inadequately supported; and,  experiencing relationship strain. Our paper provides definitions for each of these and quotes from patients to help explain and illustrate what treatment burden ‘feels’ like.

Looking at this list of impacts, I think it is clear that the experience of treatment burden is much more than the list of medication side-effects it is often equated to. Treatment side-effects such as nausea, rashes, palpitations etc are well recognised in medicine; indeed, many papers on treatment burden focus solely on these physiological side-effects. Whilst we found that physiological side effects were important we also identified that in many cases it was not the side-effects themselves that were most significant, but the knock-on impact that those side-effects had on people’s valued activities, relationships and identity.  This aligns with Amarta Sen’s capabilities approach ,  and views healthcare as much more than ‘healing the body’ but rather enabling people to ‘do, feel and be’ ‘what, how and who’ they choose (read more in this excellent paper by Vikki Entwistle and colleagues). Viewed from this perspective, treatments are only effective when they not only relieve the original symptoms but when they also do not compromise people’s capabilities to function as they wish in all domains of their life (physical, psychological, social and relational).

This review also identified how people attempt to avoid or minimise treatment burden. One  approach to minimising BoT was to psychologically normalise treatments through self-talk and reframing. Alternatively, many patients stopped or modified their treatments. We called this ‘rationalised non-adherence’ to reflect the rational nature of these acts when seen from the perspective of people trying to maximise their capabilities and life quality. Clinicians working in end-of-life care appeared comfortable discussing and supporting non-adherence decisions; however, in other healthcare arenas patients’ non-adherence was often frowned upon by professionals and became a ‘secret-act’, generating guilt, disrupting relationships and reducing outcomes.

We think that it’s time that the ‘patient-centredness’ agenda is extended to more fully consider treatment burdens and rationalised non-adherence in everyday clinical encounters. Clinicians need to engage patients in conversations that allow them to be honest about treatment burden and discuss adherence difficulties without fear of judgement. Appropriate modifications can then be made that minimise disruptions to all aspects of patients’ lives.

Sara Demain, Associate Professor, Faculty of Health Sciences, University of Southampton

Sara is supported by a post-doctoral fellowship awarded by the UK National Institute for Health Research. The views expressed in this publication are not necessarily those of the NHS, the National Institute for Health Research or the Department of Health.