Diary post of a visiting researcher

Dear Diary,

Sat May 7th. 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 11th. 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 12th. 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 15th. 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 16th. 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 17th. 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 18th. 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 20th. 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 22nd. 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 25th. 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 26th. 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 7th-10th, 2016). Oral presentation on September 10th: ‘Choice Awareness as Pre-requisite for Shared Decision Making in Videos of Clinical Encounters’.

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

  1. 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.
  2. Barry MJ, Edgman-Levitan S. Shared decision making–pinnacle of patient-centered care. N Engl J Med 2012: 366(9): 780-781.
  3. 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.
  4. Legare F, Thompson-Leduc P. Twelve myths about shared decision making. Patient education and counseling 2014: 96(3): 281-286.
  5. 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.
  6. 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.
  7. 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.
  8. 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.
  9. Kleinman Arthur. The Illness Narratives: Suffering, Healing, And The Human Condition. Basic Books, 1988.
  10. 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.

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!

JCphoto1

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

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