Mayo Clinic – care that fits

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).

shared decision making

My experience in KER unit

Short, deep, and intense are the three words that best describe my experience in KER unit. I learned a lot from each and every one of the incredible members of this family, they’re all admirable. Everybody loves to work and I love that. The work environment is at its finest. They’re highly productive, very kind, and very very friendly. They made me feel at home since the very beginning. This is the perfect place to do research. However, not any kind of research. But research that improves, with elegant solutions, the patient care.

One of the best lessons I take home is that when JP (“yei-pi”) and I were talking about a research project, and he told me: “Just remember that the results from every research must mark the beginning of another one and most contribute to the greater picture; every research project is bounded to the next one, so that all the projects together can contribute to improving the patient care”.

On my first day, Victor invited me for a cup of coffee. Walking back, I expressed my gratitude for having the opportunity of being able to be here and my full intention to work as much as possible. To what he answered: “KER unit is a place for grownups; it depends on you how much you want to work. If you want more work, ask for it; if you want less, just say”. Later, he concluded our chat with the following: “Dive into the pool, if it contains water, you’ll probably swim; if it doesn’t, you’ll only get a bump in the head”.

Throughout my stay here, I got involved in as many projects as I could. But most importantly, I had the support to develop a few of my own. I worked on a systematic review to assess the effectiveness of interventions made to foster cost conversations between patients and clinicians. I had the opportunity to start this review from the beginning and even to lead the project. Cost discussions are considered a key element for high quality care. Surprisingly, we found out that there is a huge lack of interventions to foster them!

Another project on which I have been working on is a critical appraisal of the cost-effectiveness analyses that have been made regarding type 2 diabetes treatment. Recent evidence demonstrated that all randomized clinical trials and meta-analyses of randomized clinical trials have failed to prove that intense glycemic control reduces the incidence of patient important outcomes such as myocardial infarction or stroke. So, we are trying to identify the sources of information from where these analyses calculate the effectiveness. This is a very important project because cost-effectiveness analyses are often made to justify new treatment options for populations of patients (e.g. countries).

Research has become a great passion in my life. It has changed my way of thinking, acting, and approaching and resolving problems. It’s awesome and very satisfactory the fact that you can generate knowledge through research. But it is even more when you know that your work is contributing to a bigger purpose: to get closer to the type of care that every patient deserves.

My stay here ends because I must go back to finish medical school and to support my research team back home with the establishment of the new KER unit in Mexico. During my six weeks with the KER family, I worked very hard every day from the morning through the night, and I discovered that I am capable of much more than I thought. Nevertheless, this capability of mine, is conditioned: I need to have a good team, and in KER unit, I have the best. Thanks to my team, I dived into the pool, I found water, and I swam.

I leave without wanting to. I leave with eager to come back.

Thanks to the KER family for this great opportunity!

Frank Barrera
INVEST-KER Unit, Faculty of Medicine, Universidad Autonoma de Nuevo Leon
Monterrey, Nuevo León, México

shared decision making

Open Communication and Shared Decision-Making in Pharmacy

As pharmacists are now embedded in many healthcare teams with responsibilities for medication therapy management, teaching shared decision-making skills is essential in our pharmacy curriculum. In the 2^nd year of a 4-year longitudinal evidence-based medicine (EBM) doctor of pharmacy school curriculum, student pharmacists are taught how to communicate evidence to patients and health care team members, and how to use a shared decision-making process with patients, using tools from the Mayo Clinic Shared Decision Making National Resource Center. The following is a reflection of their experience, as future pharmacists, with the shared decision-making activity:

In a society where patients have a plethora of information at their fingertips, curiosity and involvement in self-care have become increasingly popular. However, with readily available information, particularly on the internet, both credible and deceptive, it is crucial that patients and health care providers work together in developing effective therapeutic plans. There are certain clinical scenarios that merit the implementation of swift, solitary decision-making by healthcare professionals. However, more often, there are cases where there is no definitive correct answer – situations in which priorities and values should be taken into consideration. We believe that the shared decision-making model is an optimal system, by which patients and health care providers can work together to formulate a clear picture of an effective action plan.

As doctor of pharmacy candidates at Western University of Health Sciences, we have had the valuable opportunity of engaging in progressive, interactive workshops that mimic the shared-decision making model. During one of these workshops, we were divided into teams and given hypothetical cases, modeling clinical scenarios. The goal of this workshop was for us to role-play as patients and pharmacists in a clinical setting to practice the shared decision making model and to learn how to effectively communicate with patients to discuss their risk, health history, and preferences to unite on healthcare decisions that are mutually agreed upon. This exercise was effective in shedding light onto the experience of a patient, as well as a practicing pharmacist in shared-decision making.

For each of the two example cases, we were supplied with shared decision-making tools to assist us in formulating a decision for our patients’ therapy options. For the first case regarding diabetes management, we were exposed to the Diabetes Medication Choice decision aid cards (https://shareddecisions.mayoclinic.org/decision-aid-information/decision-aids-for-chronic-disease/diabetes-medication-management/), each of which focused on one topic and all pertinent information that may affect patients’ decisions, such as cost, lifestyle modifications, fear of needles and insulin therapy, blood sugar levels, side effect concerns, among other topics. In essence, these cards help both the patient and healthcare provider discuss aspects that the patient valued in order to choose the most appropriate treatment option. For instance, the patient in this one case study did not have any cost limitations, was most interested in minimizing alterations to her daily routine and enhancing weight loss. We began looking at her options based on these topics, and moved our way to other topics based on her priority scale. We simultaneously integrated clinical expertise and scientific evidence into the equation in order to make the best possible decision.

Another tool we used was the online interactive tool for determining fracture risk, developed by the Mayo Clinic Shared Decision Making National Resource Center for our osteoporosis patient case. This was a great resource because it allowed us to engage with our patients, as healthcare providers, by asking questions about their history, potential risk factors for developing osteoporosis, and preferences in their lifestyle or therapy. After we gathered all pertinent information, we input our patient’s specific data into the website, which then generated a user-friendly 100-face Cate’s plot, a visual aid that displays the patient’s personalized fracture risk with and without treatment, so that the patient could better understand the level of improvement offered by the potential treatment plan. Additionally, other tabs included tips on lifestyle modifications and other therapy options for patients to consider. This tool provided patients with a visual aid to better understand their risk for developing osteoporosis and the benefit of initiating osteoporosis therapy. Tools like these give healthcare providers, and patients alike, an opportunity to communicate with each other interactively and highlight the importance of EBM, especially when it comes to making important healthcare decisions. This allowed us another chance to interact with the patient and provide them with an outline of key points to focus on during the SDM session.

In essence, the shared decision-making model is the application of EBM. With the adoption of EBM in clincal practice, we believe that the SDM model will become organically integrated into most (if not all) health care practices. Participating in the SDM simulation workshop was very valuable as it fostered a patient-pharmacist interaction that remained focused on the patient’s priorities and values, while still catering to the pharmacist’s goals of achieving therapeutic efficacy. This is important because, based on our experience, it seems that patients respond best to information that is organized in a fashion they can appreciate and understand, without being clouded by hazy, complex information. This experience also allowed us to hone our clinical skills by showing us how to frame our questions and topics while effectively communicating evidence-based information to patients. We believe that due to their increased involvement in reaching a decision about the treatment plan, patients will be more likely to adhere to the designated agenda – as a proactive contributor to their healthcare plan, they will be more aware of the risks and benefits of adherence, as well as the risks of non-adherence. In situations where there is no definitive therapeutic plan, the patient and pharmacist can work together to figure out whether a treatment is necessary, and if so, which treatment option is most suitable. Ultimately, the SDM model will help us address clinical siutations that require a collaborative effort from both health care provider and patient.

Submitted by:

Doctor of Pharmacy Candidates, Western University of Health Sciences:
Ani Arsenyan, BSBA, Dara Nguyen, BS, Sona Sourenian, BS
EBM Curriculum Coordinator/Faculty and Professor, College of Pharmacy:
Cynthia Jackevicius, BScPhm, PharmD, MSc, BCPS-AQ Cardiology, FCSHP, FAHA, FCCP, FCCS

shared decision making

Shared decision making in immigrant patients

Authors: Claudia C. Dobler, Gabriela Spencer-Bonilla, Michael R. Gionfriddo, Juan Pablo Brito

Shared decision making (SDM) has been widely advocated [1] and called the pinnacle of patient-centered care [2]. Translating this ideal into reality has proven challenging [3]. Several papers have identified barriers to the translation of SDM into practice [4-6]. A number of challenges arise in the context of intercultural and inter-linguistic SDM, which may be particularly pertinent to immigrant populations. Some of the challenges of SDM in an intercultural context have been summarized in a paper by Suurmond et al. [7]. These challenges include 1) language barriers, need for interpreters, 2) differences in health beliefs and concepts of illness between the patient and clinician, 3) differences in role expectations, e.g. an apparent preference for a paternalistic approach or desire for family-centered model of decision making, 4) consultation situation (e.g. time constraint and lack of culturally adapted patient information), and 5) low health literacy. Recently, our SDM Working group at Mayo discussed this article with the lens of applying the lessons to the development of an SDM tool for immigrant patients discussing preventive tuberculosis treatment with their clinicians.

A core component of SDM is communication. When clinicians and patients have to communicate through an interpreter, the work of SDM is complicated by: incorporating a third party into a sometimes intimate conversation, disruption of typical communication flow, lengthening of the medical encounter, and the telephone effect when interpreters engage in interpretation and curation of language rather than pure translation. Interpreters, whether professional or lay, may make judgments about which information is important to convey to patients (and back to the clinician) and which information is not. Little is known about how this form of triadic communication affects the process of SDM and the extent to which interpreters’ knowledge, attitudes and beliefs affect SDM and the use of SDM tools in clinical encounters. A recently published study that analyzed three consultations with an interpreter in which an Option Grid for osteoarthritis was used, found that discussions of treatment options were mainly between clinician and interpreter [8]. Patients had only minimal participation in the discussion with an average of four words articulated when they had an opportunity to speak, indicating that patients did not have a significant role in discussing treatment options.

In addition to differences in language, patients may have illness narratives [9] and health literacy which do not align with those of their clinicians. Providing care is also complicated by the fact that immigrants, especially those newly arrived in the destination country and with limited socio-economic resources, can have pressing material needs and concerns like providing for the daily needs of their families. A holistic approach to improving health and well-being must also take into account each patient’s context in the decision making process.

A single solution will not address all of these barriers, and more research is needed to determine the effectiveness of available interventions. For conversations that require interpreters, more research is needed around the dynamics of these triadic conversations as well as strategies for facilitating SDM in this context. For example, future research in this area could evaluate the effect of academic detailing (on SDM and the use of encounter decision aids), or training of interpreters on using SDM during the clinical encounter. Testing whether this could be achieved with interpreters working over the phone has the potential for widespread implementation. Research is also required to find models of SDM that do not only facilitate collaborative deliberation between two individuals (the patient and the clinician), but facilitate the inclusion of family members and carers into the decision making process. To adapt to cultural differences, group education classes or shared visits in addition to individual encounters may help create a cohesive narrative between patients and clinicians. This strategy is currently being implemented by one of our collaborators in China. As many cultures have a family-centered model of decision making, patients’ families could be integrated into these group classes as well.

At times, SDM conversations will need to incorporate existential or practical needs that extend beyond a specific medical decision. Thus, components of the ICAN tool, which can help prompt conversation about the patient’s context and situation including goals, priorities, capacity, and burden [10], may be a useful addition to a SDM intervention in this disease context.

While ongoing refugee crises throughout the world have highlighted the limitations of current approaches to SDM, these challenges exist to varying degrees in all encounters; we all have our own microcultures and idiosyncrasies. Discovering how to communicate with one another in an effective, respectful, compassionate, and empathic manner is essential for the realization of the promises of patient-centered care.

We welcome the opportunity for continued conversations and collaborations. Please share your comments, stories and experiences in this area. Contact us at KERUNIT@mayo.edu.

References

Frosch DL, Moulton BW, Wexler RM, Holmes-Rovner M, Volk RJ, Levin CA. Shared decision making in the United States: policy and implementation activity on multiple fronts. Z Evid Fortbild Qual Gesundhwes 2011: 105(4): 305-312.
Barry MJ, Edgman-Levitan S. Shared decision making–pinnacle of patient-centered care. N Engl J Med 2012: 366(9): 780-781.
Elwyn G, Scholl I, Tietbohl C, Mann M, Edwards AG, Clay C, Legare F, van der Weijden T, Lewis CL, Wexler RM, Frosch DL. “Many miles to go …”: a systematic review of the implementation of patient decision support interventions into routine clinical practice. BMC medical informatics and decision making 2013: 13 Suppl 2: S14.
Legare F, Thompson-Leduc P. Twelve myths about shared decision making. Patient education and counseling 2014: 96(3): 281-286.
Joseph-Williams N, Elwyn G, Edwards A. Knowledge is not power for patients: a systematic review and thematic synthesis of patient-reported barriers and facilitators to shared decision making. Patient education and counseling 2014: 94(3): 291-309.
Legare F, Witteman HO. Shared decision making: examining key elements and barriers to adoption into routine clinical practice. Health Aff (Millwood) 2013: 32(2): 276-284.
Suurmond J, Seeleman C. Shared decision-making in an intercultural context. Barriers in the interaction between physicians and immigrant patients. Patient education and counseling 2006: 60(2): 253-259.
Wood F, Phillips K, Edwards A, Elwyn G. Working with interpreters: The challenges of introducing Option Grid patient decision aids. Patient education and counseling 2017: 100(3): 456-464.
Kleinman Arthur. The Illness Narratives: Suffering, Healing, And The Human Condition. Basic Books, 1988.
Boehmer KR, Hargraves IG, Allen SV, Matthews MR, Maher C, Montori VM. Meaningful conversations in living with and treating chronic conditions: development of the ICAN discussion aid. BMC Health Serv Res 2016: 16(1): 514.

shared decision making

The many paths to weight loss: Helping patients to find the treatment for obesity that fits their needs, preferences, and values

Submitted by Jennifer Clark, M.D.

Obesity is a complex condition that places a substantial burden on patients. Not only does excess weight gain increase one’s risk for many serious health issues, including coronary artery disease, obstructive sleep apnea, type 2 diabetes, stroke, and various malignancies, but obesity and its associated health problems also result in significant economic impact for individuals and the United States health care system as a whole. Additionally, the emotional impact of obesity should not be forgotten; studies suggest that obesity and depression often go hand-in-hand. Obese individuals are at a significantly higher risk for major depression, and the burden of depression is often reduced with sustained excess weight loss.

Even as obesity continues to affect a greater number of this country’s adults, more and more treatment options are becoming available to assist patients with losing weight. However, these treatments involve a dizzying variety of risks, benefits, cost, and relative impact, making for a difficult decision for patients and a challenging discussion for physicians. The importance of this patient-physician interaction and the presence of shared decision making is apparent, as the treatment of obesity, like any other chronic disease, cannot be separated from the patient’s life and circumstances. Instead, it must be personalized and integrated into the context of one’s life.

The patient-physician conversation is an important setting for exploring how current evidence and knowledge may help patients clarify which treatment option makes intellectual, practical, and emotional sense for them. Shared decision making (SDM) tools used during the clinical encounter support these vital conversations about diagnostic and treatment decisions. Such tools have been devised for complex conditions including diabetes, Graves’ disease, and rheumatoid arthritis; however, no SDM tools have yet been developed to support conversations about the treatment of obesity. Therefore, I have decided to join the Knowledge and Evaluation Research Unit to work with the team in developing a SDM tool for obesity treatment. Once created, it will facilitate patients’ engagement in the decision-making process to ensure that the chosen treatments are congruent with each patient’s values, preferences, and lifestyle.

I am very honored and eager to begin working with patients in this capacity as a compliment to my clinical training as a resident physician here at Mayo Rochester. It is my hope that in working on this project, patients will be more confident, active participants in choosing the right treatment for them based on current evidence. I know that I will learn so much from the process and from patients, and I couldn’t be more excited to be working with the KER Unit to further the cause for patient-centered outcomes and research!

Jennifer Clark is an Internal Medicine Resident at the Mayo Clinic.

shared decision making

Communication is a challenge

Submitted by Jennifer Barton, M.D.

Communication is a challenge in my practice. As a rheumatologist in a busy, public hospital clinic, I had the privilege of caring for patients who spoke Spanish (a third), Cantonese (a third), Vietnamese, Russian, Lao, Tagalog, or English. Much can be conveyed in a smile or a warm handshake, but this is insufficient when patient and doctor need to make decisions about a complex chronic condition like rheumatoid arthritis (RA). In particular, it was hard to identify how best to manage their conditions with one of over a dozen available treatments. In my toolbox, there was a gaping hole with no tools available to facilitate RA treatment conversations for this needy population.

Sitting at my desk on a Sunday afternoon drafting a grant proposal to create tools for shared decision making for diverse populations with RA, I came across a paper describing a clinical trial of a decision aid for diabetes. Diabetes and RA share many similarities:

both are chronic diseases,
both have many options for treatment with differing risks and benefits and costs, and
both require substantial patient self-management.

This decision aid was colorful, broken out into “issue” cards – like baseball cards (except not by player, or in this case by drug, but by feature), which I thought would be a great template for an RA decision aid, one that could be presented in different languages for patients with limited health literacy.

On a whim, I wrote to the corresponding author to see if I could learn more about the process and perhaps even use their tool as a template. Within hours, I received an enthusiastic reply from Victor Montori at the Mayo Clinic. This led to a phone call, the proposal, funding, and the work generated from fruitful collaboration and inspiration.

The journey from grant writing to project completion was filled with many adventures. I had never worked with designers or with patients in research. I looked forward to the meetings of our patient advisory board. They were full of laughter and shared stories. Thanks to them I learned about real life with RA. I got a chance to listen to the patients share experiences living with RA, getting tips, and finding value and support in one another. Working with patients was hands down the most satisfying and humbling part of the process for me.

Our most recent paper describes the results of a pilot study of 166 patients with RA from vulnerable populations (racial/ethnic minority, age >65, limited health literacy, immigrant status, non-English language) that tested a low literacy RA medication summary guide and RA Choice, the decision aid. We showed that the tools improved knowledge and reduced decisional conflict in this diverse population.

Now after all the hard work, and the results of the pilot study showing the tools worked in our patient population, we want to share the tools and improve conversations for patients with RA and their clinicians everywhere. RA is a chronic, disabling condition which leads to early mortality. Patients made vulnerable by how we deliver healthcare to them experience worse outcomes, and communication in these groups still needs work. Our hope is that with these tools and continued attention to the needs of all groups in the RA community, we can help reduce disparities and improve care for all patients with RA.

Jennifer Barton, MD
Associate Professor of Medicine, OHSU
Staff Rheumatologist, Portland VA Medical Center
Dr. Barton is an academic rheumatologist with a research focus on health communication and rheumatic diseases.

For more information on Rheumatoid Arthritis (RA) Choice, click here.

shared decision making

Diary post of a visiting researcher

Dear Diary,

Sat May 7^th. All set, ready to go! Excited to visit the KER Unit for a few weeks and to join them at the SAEM SDM Consensus Conference in New Orleans. This will be my first visit to the Mayo Clinic, and one I’ve been looking forward to since I became a research collaborator last winter.

Wed May 11^th. We just returned from the Consensus Conference. It was inspiring and motivating to see so many participants (most of them clinicians) trying to find ways to make SDM work in practice and to improve care for their patients. Victor presented his keynote lecture ‘What is SDM? (and what it is not)’ and we worked on writing a paper on this keynote for Academic Emergency Medicine.

Thu May 12^th. First day at the KER Unit. What a day! I attended a course on EBM, discussed grants and ongoing research projects with Juan Pablo, Mike and Aaron, and had a braindump on SDM (old and new thinking) with Victor and Ian. Note to self: replace ‘yes, but…’ by ‘yes, and…’.

Sun May 15^th. Friday, I finished the AEM paper with Ana and Erik. Gaby presented her study on the effects of social networks in management of diabetes on Saturday. In the evening, we got together for drinks and laughs (with bubbles, cheese and chocolates) at Annie’s place. Today, I’m going out to meet Nilay for brunch.

Mon May 16^th. Started with the weekly huddle this morning: what a great way to get an overview of what each member of the team is working on right now. I worked on our Choice Awareness project* and attended the Patient Advisory Group to discuss Juan Pablo’s project on SDM in Thyroid cancer treatment. Amazing how this group of patients manages to come together every month (for over 10 years!), to improve the work of the researchers and to make sure that researchers don’t lose the connection with ‘the real world’.

Tue May 17^th. Trying to see whether the Choice Awareness project can take us to the moon! Maybe. Also met with Kasey to learn more about the ICAN tool.

Wed May 18^th. No trip to the moon (yet), we will have to find other methods to make this journey. I worked with Victor to build my Apollo II. Juan Pablo and Ian joined, which led to a conversational dance of thoughts, (crazy) ideas, hypotheses, and approaches. Best day ever! In spite of, as well as because of the challenges we faced this morning. In the afternoon we came together with a group of clinicians and researchers interested in SDM in diagnostics to see how to take this field forward.

Fri May 20^th. Yesterday, I discussed the progress and challenges around the Choice Awareness project in the SDM journal club. We went for dinner and drinks afterwards to continue our discussion on SDM old and new thinking. I continued with the project today, focusing on capturing the differences in SDM between a mechanical approach and a human connection. It takes two to tango, but we have no way to measure that dance. Speaking of dancing (and of mechanical approach versus human connection), in the evening we had a birthday party at the local salsa place.

May 22^nd. BBQ with the KER Unit team at Aaron’s place yesterday and smores at the river with Gaby, Mike and the Montori family today.

May 25^th. Worked on the Choice Awareness project for the past few days. Met with the department of Neurology yesterday to discuss possible collaboration. Kasey received good news (scholarship), as did Laura (residency). Maggie arrived, and Ana said goodbye. Sara had her last day before her maternity leave. I worked on Aaron’s manuscript and discussed a second paper for AEM on SDM/informed consent with Rachel.

May 26^th. Last day at the KER Unit. Overwhelmed by how much I learned about the team, the work, the collaborations. And, to be honest: about myself and about my work as a researcher. I’m impressed how a team that advocates kind and careful care manages to practice what they preach and welcome guests in such a warm and friendly way. After saying goodbye to Kirsten, this kind and careful visit ended with a road trip with Ben to the airport. What an experience.

With love, Marleen

Marleen Kunneman, PhD. Research fellow at the department of Medical Psychology of the Academic Medical Center, University of Amsterdam (the Netherlands), and research collaborator of the KER Unit.

*Note: Results of our Choice Awareness project will be presented at the European Association for Communication in Healthcare (EACH) Conference in Heidelberg (September 7^th-10^th, 2016). Oral presentation on September 10th: ‘Choice Awareness as Pre-requisite for Shared Decision Making in Videos of Clinical Encounters’.

shared decision making

Making a difference one clinician at a time

Submitted by Renee Herman

I wanted to start my day by sending you a “thank you!” for your work. I have no awards to give you, live applause from the audience, or notations that reference your terrific work in journals. Today, from me, I can only give you the experiential, warm hearted “thank you!”

Almost two years ago now, I accepted a position here in the heart of Kansas City (literally a bi-state city) at Saint Luke’s Hospital ‘on the Plaza”. We are a part of a larger health care system, but this hospital is the heart of the system, in the heart of the city. My ‘title’ has changed several times, which tells you the changing dynamic of what I do. Most recently, I wear the title of “High Risk Transitional Care Coordinator” which in its simplest description is a role whereby I identify or get referrals for those high risk, complex care, often chronically ill patients who are underinsured and under resourced. From May to December 2014, I received over 150 referrals, and this past year, had over 200. These referrals came from all over the acute care setting, but also extended into the post acute care setting including several Patient Centered Medical Homes (PCMH) and Saint Luke’s Home Health Care and Hospice team. In the acute care setting, I have had referrals from the Emergency Department where our high risk patients are some times first identified, to all inpatient units, including transplant units for heart, kidney and liver. Most often, the referrals come from frustrated staffs who just ‘don’t know what to do with this one’. So, they call me. There are plans to expand this role into a ‘department’, but in this every changing healthcare environment, new programs like this one that was funded as a ‘pilot’ by a grant, often have as the number one question, “Where do we go from here?.” So, for now, I am the “department” though I have found great support by working with area ‘safety net clinics’, other community services, and terrific Community Healthcare Workers who often assist me.

In the midst of gearing up with information for this role, trying to understand my patient population so that I could give them the care and service my patients really needed, I found about your work at Mayo Clinic. I’m a Minnesotan by birth and have visited Rochester since I was young (side note: it’s where I first learned about the power of illegal drugs from a video I saw at a Mayo learning center. It greatly impacted my life as a grade school child.). I watched Mayo Clinic grow from a ‘hospital/clinic’, to now a ‘health care system’ occupying city blocks! The strong feelings I have about Mayo’s reputation for quality and patient centered care set the stage favorably for you, even before I listened to you on an IHI radiocast. Again, Mayo Clinic lived up to its reputation in my life and when I heard you talk about your work, it literally made me cry with excitement. Finally, someone within the medical profession ‘gets it!’ I was seeing what your were describing in my patient population and right then, could name many of my patients who were really trying, but not succeeding, and suddenly it all made sense as to ‘why.’

Now, in working with my patients, I try to really hear them as they set out for me in their own words, what they can and cannot do to manage their own health care. Sometimes, they show me by what they are, or are not doing, what ‘really matters to them’. It makes sense to me now and I can better explore with them their feelings of ‘never quite feeling like they are ‘measuring up to what they’ve been asked to do by their Doctor or health care team. Some have even said to me, “It’s impossible!” and now, I can agree. When I ask patients “What Matters to You”, they often look at me and say, “No one has asked me that before”, and they go on to tell me. Interestingly, what seemed “impossible” for them, when broken down into ways that are manageable and meaningful to them, seem more “possible”. I have story upon story of patients whom I have helped in the “transition” between the hospital and home, the “transition” off of home care and into the PCMH, and from ‘managed health care’ that was put upon them, to ‘self management’ of care that fits with their healthcare priorities. From the End Stage Renal Disease patient who rides an electric wheelchair daily for 45 minutes to dialysis by bus because she wants to live independently in the only subsidized apartment she could find (we were able to get her a bed, which was what ‘mattered to her’ in her health care plan), to the Heart Failure patient who was illiterate and labeled ‘non-compliant’ (we helped him to log his weight daily because he could read numbers and his ‘self management ’ confidence rose significantly because he now had something he could do to show he was trying to follow his treatment plan, and that was what ‘mattered’ to him), my ‘tool box’ of ‘helps’ and understanding, has been significantly aided by your work. We have long way to go to actually ‘do’ what your work has shown would actually transform the care of our complex care, chronically ill patients, but even in the basic ways I’ve applied your studies, I’m finding increased satisfaction in my work, less ‘burnout’ from ‘trying to make patients do it our way’, and positive outcomes in the lives of the patients I’m asked to help.

So, from the heart of a very grateful nurse (one who has been in the profession for greater than 35 years and is still learning!), I say “thank you.” It’s cold here…and I know even colder there, but hopefully today, your heart will be warmed knowing you are making a profound ‘experiential’ difference in the lives of caregivers and patients. Thank you. Thank you. Keep on!

Renee’ Herman, RN, BSN, MHSA
High Risk Transitional Care Coordinator
Saint Luke’s Hospital

MDM in practice

REPOST: Why do people with multiple long-term conditions report worse patient experience in primary care?

Reposted with permission from Charlotte Paddison (Original posted on Cambridge Centre for Health Services Research on March 25, 2015)

Paddison, C.A.M., Saunders, C.L., Abel, G.A., Payne, R.A., Campbell, J.O., Roland, M. Why do patients with multimorbidity in England report worse experiences in primary care? Evidence from the General Practice Patient Survey. BMJ Open 2015;5:e006172 doi:10.1136/bmjopen-2014-006172. Access this article here.

Here at the CCHSR we are very interested in multimorbidity. In our recent paper, we used data from nearly 1 million patients in England to understand how people with more than one long-term condition experience care provided by their GP surgery. We found that people with multiple long-term conditions reported worse primary care experiences, when compared to patients in our study who had either one, or no, long-term condition.

Why do people with multiple long-term conditions report worse primary care experiences?

Our results showed that health-related quality of life, particularly in the domain of ‘pain’, might be important. Differences in perception – influenced by pain or depression – could affect the way patients’ report their experiences of primary care. On the other hand, it could be because people with multiple long-term conditions have different and more complex needs than those with single or no long-term conditions. These needs don’t fit well with guidelines designed for patients with a single condition, or health policy framed around the management of a single condition.

Health policy makers and clinicians need to recognise that the patient experience and health care needs of people with multimorbidity are likely to be different to those with a single long-term condition. We agree with Victor Montori on the need to minimise the burden of treatment, as well as the burden of disease; and with Chris Salisbury on the need to (re) design health care for people who use it. As highlighted by Reid et al in the BMJ, chronic pain is very common, and our results suggest recognising and managing pain may be important to improve quality of life and patient experience for people with multiple long-term conditions.

Interested to learn more?

We’ve also blogged previously on what multimorbidity means (and doesn’t); the importance of continuity of care for people with multiple long-term conditions; the relevance (or otherwise) of care plans; why single disease guidelines and protocol-driven medicine don’t work for people with multimorbidity, and the intellectual work needed to provide an alternative.

shared decision making

For Empathic Decision Making

By Victor M Montori, Ian Hargraves, Annie LeBlanc

Policymakers fashionably prescribe shared decision making for patients who face fateful decisions. These patients have two or more medically reasonable courses of action that differ in important aspects. The extent to which these aspects differ in ways that matter to each individual patient justifies patient involvement in the decision-making process. Similarly, the extent to which clinicians can accurately predict the values and preferences of informed patients reduces the value of shared decision making. Only in circumstances where the distribution of patient preferences is very narrow can clinicians correctly deduct patient preferences (e.g., analgesics vs. no intervention for moderate to severe pain). This is often the case when the pros and cons of alternative courses of action are well known, their likelihood estimates are based on highly reliable research evidence, and difference between the benefits and the potential harms and inconveniences is large and clear. In such situations the distribution of patient preferences will be narrow enough that most clinicians can assume correctly what most patients will want. At the extreme, these decisions will seem purely technical, where the right course of action is apparent to those with a good understanding of the situation. This would include professionals with pertinent training. In situations that cannot be resolved by the application of technical knowledge, patients, when informed, will exhibit a range of preferences. It seems appropriate then that patients and clinicians partner to share information, deliberate, and arrive at a decision together. We call this process shared decision making.

Proponents of shared decision making assume that most clinicians and patients, when given the tools, time, and supportive setting necessary, will be able to implement shared decision making. Reality seems to behave differently: surveys suggest that patients are not universally inclined toward shared decision making, clinicians are often portrayed as barriers to this process, and environments have electronic medical records, phone calls, time pressures, competing demands, and noise that conspire to interfere with shared decision making. What’s going on if patients and clinicians aren’t adhering to the shared decision making prescribed on their behalf?

Our group, the KER UNIT, characterizes shared decision making as a conversation – an activity in which patients and clinicians turn with one another (the etymology of conversation—versare turn; con with). In conversation, the options with their attributes or issues are in dynamic interaction as the patient and clinician consider them and experimentally try them on. This highly interactive dynamic requires the active engagement and involvement of the patient and clinician. This turning-with of patients and clinician is the dance of shared decision making.

The clinician is used to contemplating the situations of patients and making tough decisions routinely; but for this patient, at this time, the task is anything but routine. Thus, it is natural to delegate to the more experienced and emotionally detached of the two the task of organizing the decision-making conversation. The clinician, leading the dance, will identify that a decision needs to be made, the relevant options and their relative desirable and undesirable features, and will invite the patient to consider these options and features. But, to what extent are patients willing and able to engage in deliberation?

We propose that the adequate way of answering this question is through empathy. In suggesting empathy we do not mean that clinicians should empathically divine the right decision for the patient; quite the opposite. We are suggesting that the co-creation of decision also involves the co-creation of the patient-clinician relationship and the conversational environment in which each decision is made. Empathy directs attention to the clinician’s active role in finding the right relationship and stance to join this patient at this time in decision making. Clinicians are trained and are expected to exhibit empathy when interviewing and examining patients, responding to patient concerns, and delivering bad news. The role of empathy in supporting decision making has not been fully discussed, to our knowledge. In this case, empathy requires attention to the situation of the patient and to the cues, verbal and nonverbal, the patient offers as the clinician invites the patient into the deliberative process. Some patients may be able to partner fully and co-create the decision; others may engage with the information, but delegate the rest of the tasks of deliberation and decision taking to the clinician. This is the expression of a preference that is being constructed on the spot (it follows that this preference cannot be adequately assessed with a survey tool, before the encounter and therefore out of context). The appropriate stance in the conversation is available to the clinician in subtle signs that the clinician can pick up through empathic attention to the patient. Focus on who the patient and clinician are, and can be, for each other in this conversation allows us to respect that the same patient may be willing to co-create one decision while preferring a lesser role for the next. The challenge for the clinician is to correctly respond, in real time, to these emerging preferences.

Shared decision-making tools produced for use during the clinical encounter need to account for this clinical task and be designed to support empathic decision making. When encounter tools offer too much information or script a step-by-step decision process, they may inadvertently limit the ability of the clinician to empathically guide the process. When tools are used in preparation for the visit, clinicians may assume that completion of the tool and associated worksheets signals that patients are fully engaged and ready to make decisions. That a tool should enable and support empathic decision making is not currently a requirement for their design of decision aids, or a metric for their impact.

In summary, shared decision making is one of an infinite set of ways in which patients and clinicians can engage in conversation about fateful decisions without a technically correct answer. To create the environment in which patients and clinicians co-create decisions, clinicians must actively invite and support patients in the process, empathically “reading” the patient to match their evolving preference for participation. Tools to support this process need to be designed to facilitate and not interfere with empathic decision making, and this may form the basis for new measures of decisional quality.

Thus, we are not just for shared decision making. We are for empathic decision making.