Thinking Beyond the Clinical Encounter

Work in shared decision making tends to focus on the clinical encounter.  Some research has focused on how to prepare patients and clinicians for a decision making encounter.  Other work has focused on how to facilitate conversations during an encounter or measuring the extent of shared decision making that occurs between patient and provider.  This focus on the clinical encounter likely has multiple origins.  First, much of the research in shared decision making has focused on decisions that are relatively discrete and time-bound, such as surgeries or screening tests.  Second, the clinical encounter is easy to access and assess.  It occurs at a specific time and place.  It involves a set group of individuals.  It has a beginning and an end.

Particularly in the setting of chronic disease, a singular focus on the clinical encounter limits our understanding of decision-making processes.  In fact, in chronic conditions decision making is often thought of as being more of a process than an event.  However, little research has investigated the details of this process.  We sought to more fully explore this process through a longitudinal qualitative study of parents of children with chronic conditions.1

In this study we followed parents (n=29 from 21 families) for 6-10 weeks following an index clinical encounter at which they discussed a treatment change for their child’s chronic condition. Parents were interviewed multiple times and asked to describe their decision process, including aspects of the process that occurred before the index encounter.  For all participants, the decision evolved over time, neither starting nor ending at the clinical encounter, and involved conversations with family members and/or friends who had not been present at the clinical encounter. Some parents described a slow, steady progression towards a decision while others either felt the decision occurred in a step-wise process or that some event led to an abrupt decision.  Regardless of how the decision evolved, parents felt their role in the decision-making process did not change over time.  Furthermore, after the decision was officially made parents continued to think about it and consider whether they had made the right decision.

The concerns and expectations parents had about treatment changed over the course time.  Often after deciding to start a new treatment the expectations shifted from focusing on symptom improvement to focusing on side-effect avoidance.  Similarly, parents’ emotions often fluctuated between worry and hope.  Some experienced relief from worry when their child did well on the new treatment while others shifted from worrying about their child’s symptoms to worrying about potential side effects.

By prospectively following parents, we demonstrated that, indeed, decision making in chronic disease is a process not an event.  It is a process that follows distinct patterns of evolution, includes numerous people and involves shifting expectations and emotions.  How then do we best support and foster shared decision making in this environment?  We need tools that capitalize on the fact that decision-making occurs over time.  Tools that help patients and families converse with clinicians and then help those patients and families converse with other people in their life.  We need to acknowledge that what happens in the clinical encounter is likely only a small part of the decision-making process, an important part but not the only part.  Finally, in the setting of chronic conditions we need to develop programs, tools and interventions that capitalize on chronicity.  Few people impacted by chronic conditions will make only one treatment decision during the course of their illness; rather chronic conditions involve a series of decisions.  By taking advantage of this repetition we may be able to help families become more skilled, engaged decision makers through learning and practicing skills at each decision making opportunity.

Submitted by Ellen A. Lipstein MD, MPH

Ellen A. Lipstein, MD, MPH

Ellen A. Lipstein MD, MPH, is a general pediatrician and health services researcher at Cincinnati Children’s. Dr. Lipstein’s research is focused on family-centered medical decision making. She is particularly interested in understanding and improving the ways parents and patients with chronic conditions collaborate with healthcare providers to make treatment decisions. Her current program of funded research uses both qualitative and quantitative methods to explore decisions about high-risk treatments, in which both the potential benefits and risks are significant. Additionally, Dr. Lipstein is a collaborator on several studies which aim to develop diverse methods for engaging patients and parents in decision making.

 References

  1. Lipstein EA, Britto MT. Evolution of Pediatric Chronic Disease Treatment Decisions: A Qualitative, Longitudinal View of Parents’ Decision-Making Process. Med Decis Making. 2015.

Where art thou o shared decision making?

By Heidi McLeod

Recent policy legislation is replete with references to shared decision making (SDM) as a way of improving the quality of care in clinical encounters (PPACA 2010). Even though these are unfunded policy exhortations, researchers are encouraged to pursue shared decision making, a process where clinicians share evidence based options with patients while respecting their needs and preferences, as an ethically viable form of healthcare delivery (Elwyn et al. 2012). In discussing how shared decision making can contribute to reducing the costs of healthcare, there has been a call to focus on patient preferences (Mulley, Trimble and Elwyn 2012). To date however, the research around shared decision making has focused more on risk communication and the process of information sharing than on the more holistic aspects of shared decision making; notably, the concept of respect.

Respect is defined as “recognition of the unconditional value of patients as persons” (Beach et al. 2007) and is as important to patients as information sharing and being involved in decision making. Indeed, both being treated with respect and decision making has independent associations with adherence, satisfaction and preventive care (Beach et al. 2005). Clinicians who are perceived as respectful to patients are shown to provide more information and express more positive affect in these visits (Beach et al. 2006). Therefore, one could postulate that without having a foundation of respect, a concept that is central to shared decision making, the rest of the process may falter. This may explain that despite decades of research, hundreds of trials, thousands of papers and policy initiatives, shared decision making has failed to take root and be implemented in everyday practice. By continuing to ignore the concept of respect in shared decision making, we are disrespecting respect.

The disrespect for respect is further evident in how we measure shared decision making. The gold standard for measuring whether shared decision making has actually occurred within an encounter is the OPTION scale (Elwyn et al. 2003). The OPTION scale assesses to what extent the clinician has engaged in shared decision making with patients and is based on a 12-point scale which determines the efficacy of the decision-making process. OPTION as well as other scales to measure shared decision making (e.g. DEEP-SDM) are not designed to measure respect (although some items may reflect respectful practices), thus it is clear that respect is not recognized as a fundamental or at least measurable construct of shared decision making.  As such, we lack the necessary tools to answer important theoretical and practical questions on the importance of respect in the shared decision making process. Developing a measure of respect could further our understanding of shared decision making as a theoretical construct. This will have practical consequences as a better understanding of respect may help researchers develop interventions to promote and clinicians to practice respect with their patients.

Developing a measure of respect has its own challenges, especially as the concept has not been clearly described by patients and clinicians. Most studies that look at respect use single item survey questions that assume the definition of respect is sufficiently intuitive to respondents. How respect is operationalized as a measure may also be problematic. While we are grappling with these issues in developing a measure of respect, we can look towards research in the healthcare communication literature as a guide on how respect may impact outcomes. Patient-centered communication can influence how satisfied patients are with their clinicians and the encounter itself and can affect adherence (Finset 2014). More psychosocial (non-biomedical) language is also associated with higher patient satisfaction (Roter et al. 1997). This is an area which can potentially help us to understand the effectiveness of SDM, particularly if we can develop a measure of respect based on verbal and non-verbal cues in the encounter. If we think about measuring the complexity of SDM in a broader framework, degrees of shared decision making bounded by respectful communication may become evident. As recently described, measures might not tell us only about the performance of a process, they might actually “drive the performance” and as such, “the right measure can be transformative” (Collins 2014).

We have been discussing shared decision making at a research and policy level for a long time. Yet there has been a disconnect between research and practice. By being able to measure respect for patients and their needs and preferences, the emergent conversation around treatment options might be far more shared than the present focus on risk communication suggests. If we begin to pay more attention to other aspects of shared decision making, and consider ways of measuring such concepts as respect, we may facilitate shared decision making’s translation into practice and improve the quality of the clinical encounter for patients and clinicians alike.

Acknowledgements:

Michael Gionfriddo, Pharm.D and PhD candidate in the KER Unit at Mayo Clinic, contributed to this blog by editing various drafts.

References:

Elwyn, G., Frosch, D., Thomson, R., Joseph-Williams, N., Lloyd, A., Kinnersley, P., Cording, E., Tomson, D., Dodd, C., Rollnick, S., Edwards, A. and Barry, A. (2012) “Shared Decision Making: A Model for Clinical Practice”, Journal of General Internal Medicine 27(10):1361-1367

Mulley, A.G., Trimble, C. and Elwyn, G. (2012) “Stop the silent misdiagnosis: patients’ preferences matter” BMJ 2012:345

Beach, M.C., Duggan, P.S., Cassel, C.K., and Geller, G.  (2007) “What Does ‘Respect’ Mean? Exploring the Moral Pbligation of Health Professionals to Respect Patients”, Journal of General Internal Medicine 22 (2007):692-695

Beach, M.C., Sugarman, J., Johnson, R.L, Arbelaez, J.J., Duggan, P.S. and Cooper, L.A. (2005) “Do Patients Treated With Dignity Report Higher Satisfaction, Adherence and Receipt of Preventive Care?”, Annals of Family Medicine 3(4): 331-338

Beach, M.C., Roter, D.L., Wang, N-Y., Duggan, P.S. and Cooper, L.S. (2006) “Are Physicians’ Attitudes of Respect Accurately Perceived by Patients and Associated with more Positive Communication Behaviors?” Patient Education and Counseling 62 (2006): 347-354

Elwyn, G., Edwards, A., Wensing, M., Hood, K., Atwell, C. and Grol, R. (2003) “Shared Decision Making: developing the OPTION scale for measuring patient involvement” Quality Safety Health Care 12 (2003): 93-99

Clayman, M.L., Makhoul, G. Harper M.M., Koby, D.G., and Williams, A.R. (2012) “Development of a shared decision making coding system for analysis of patient-healthcare provider encounters”, Patient Education and Counseling 88 (2012): 367-372

Finset, A. (2014) “50 Years of Research on the Effect of Physician Communication Behavior on Health Outcomes”, Patient Education and Counseling 96 (2014) 1-2.

Roter, D.L, Stewart, M. Putnam, S.M., Lipkin, M., Stiles, W. and Inui, T.S. (1997) “Communication Patterns of Primary Care Physicians”, JAMA 277 (1997): 350-356

Collins, A. (2014) “Measuring What Really Matters. Towards a coherent measurement system to support person-centered care” Thought Paper. The Health Foundation.

Shared-decision making in cancer

By Khalid Benkhadra, M.D.

Recently, many studies have investigated the role patients want to play in the decision making process around how to manage their health.  This is of great importance, because while clinicians are experts in what works for a certain condition, patients are experts at what works for them. Shared decision making (SDM) is a mode of decision making where the expertise of both clinicians are respected and integrated into decision making through a process of collaborative deliberation..  Prior studies examining the role patients prefer when deciding on cancer treatment found that patients prefer to play a role in decisions, but that role varied from patient to patient1-3. To determine whether or not patient’s preference for SDM modified quality of care or physician communication Kehl et al4 conducted a survey. This survey was conducted among participants in the cancer care outcomes research and surveillance consortium (CanCORS).  Patients in this consortium were questioned about what their preferred role was when making cancer related treatment decisions and what actual role did they have in the decision making process around treatment for their cancer. They also reported on their perception of their overall quality of care.

Two thirds (67.8%) of patients reported that the overall quality of care they received was excellent and over half (55.8%) rated their physician’s communication highly. When they examined how these ratings correlated with the roles patients would prefer to play in the decision making process, they found that compared to patients who preferred share decisions patients who preferred that their physician control the decision making  were less likely to give top ratings to their physician. These patients also gave lower ratings of physician communication. The reasons behind these results are not clear and need further investigation.

Percentage of patients reporting excellent quality of care and high communication were both poorly calculated. For quality of care, results were reported by decisions; individual patient rating was not reported. For rating communication, analysis was restricted to patients who answered 3 out of 5 questions and answers were averaged.

In general, outcomes were very subjective and it was difficult to assess how strong the relationship between the patients answers and the actual encounter; there is a possibility a patient might rank an encounter low if he is not happy about a reason not related to the actual encounter. Besides, no information was reported about how educated tha patients were about SDM (and if yes, how much they were). Having a third party watching the encounter and assessing the communication would be a good addition as we can compare it with the patients response and see if both match (rather than taking only the patient’s response)

These findings in general suggest that providing information to patients with cancer and engaging them in decision making is valuable, even for patients who express a preference for a physician controlled decision making process.

References:

  1. Degner LF, Sloan JA. Decision making during serious illness: what role do patients really want to play? J Clin Epidemiol. Sep 1992;45(9):941-950.
  2. Keating NL, Guadagnoli E, Landrum MB, Borbas C, Weeks JC. Treatment decision making in early-stage breast cancer: should surgeons match patients’ desired level of involvement? J Clin Oncol. Mar 15 2002;20(6):1473-1479.
  3. Hawley ST, Lantz PM, Janz NK, et al. Factors associated with patient involvement in surgical treatment decision making for breast cancer. Patient Educ Couns. Mar 2007;65(3):387-395.
  4. Kehl KL, Landrum M, Arora NK, et al. Association of actual and preferred decision roles with patient-reported quality of care: Shared decision making in cancer care. JAMA Oncology. 2015;1(1):50-58.

MAGIC: Time to create guidelines and decision aids we can trust, use, and share


By Per Olav Vandvik, Anja Fog Heen, Thomas Agoritsas

Some problems with current guidelines

To succeed in evidence-based diagnosis and treatment at the point of care, health care personnel need access to the best current research evidence, for example through trustworthy clinical practice guidelines. Most guidelines suffer from methodological weaknesses (e.g., identification and assessment of research evidence, development of recommendations), suboptimal presentation formats and infrequent updating of content. New standards for trustworthy guidelines  and advanced systems for evidence assessment and creating recommendations  provide better opportunities to succeed in development of guidelines but also illuminate the demand for methodological competence, clinical expertise and time. Equally important as providing trustworthy content in guidelines is to achieve effective dissemination at the point of care, to allow shared decision-making with patients and to perform timely updates of content.

Solutions through MAGIC

Our insights on current limitations with guidelines has resulted in an urge to provide solutions to current problems with creating, disseminating and updating guidelines. We have operationalized the solutions through what we call the MAking GRADE the Irresistible Choice (MAGIC) research and innovation program and non-profit initiative (1). A key innovation in the MAGIC program is a web-based authoring- and publication-platform (MAGICapp) that allows parallel development and publication of guidelines on the web, in tablets and smartphones, as well as integration of guidelines into electronic health records.

The guideline content is presented to end-users in what we call “top layer formats” that defines the minimum amount of information clinicians need to apply recommendations in practice. This multilayered presentation format has been developed through extensive research in the MAGIC and the DECIDE project (2).

Importantly, the MAGICapp includes structured content of all guideline content in a database based on the PICO questions that underlie all recommendations. Structured guideline content facilitates not only the development and publication of the guidelines but also facilitates dynamic updates of the guidelines on a recommendation per recommendation basis once new evidence emerges.

Decision aids that really promote shared decision-making

Most recommendations in trustworthy guidelines are weak. Weak recommendations reflect a fine balance between benefits and harms of treatment alternatives and implies that clinicians should apply the recommendations in a balanced manner in encounters with individual patients. In such situations shared decision-making – through use of decision aids available through the MAGICapp – may come into play (3). The clinician and patient can together deliberate on treatment options  through the use of a decision aid on a tablet computer, designed to create conversations. The decision aid visualizes anticipated benefits, harms and practical issues of the possible treatment alternatives. Our decision aids are based on pioneering work by – and fruitful collaboration with – Dr. Victor Montori and colleagues the Mayo clinic.

What next for MAGIC?

The MAGICapp is available for use for organizations charged with development of guidelines. We are now expanding our scope to include the development of multilayered evidence summaries and decision aids also in the context of trustworthy systematic reviews. We welcome you to test MAGICapp and provide feedback to further improve functionality of the authoring process and publication outputs, to the benefit of clinicians and patients at the point of care.

References:

  1. Vandvik PO, Alonso-Coello P, Treweek S, Akl EA, Kristiansen A, Heen AF, Agoritsas T, Montori VM, Guyatt GH. Creating clinical practice guidelines we can trust, use and share: A new era is imminent. Chest. 2013;144:381-9.
  2. Kristiansen A, Brandt L, Agoritsas T, Akl EA, Granan LP, Guyatt G, Vandvik PO. Applying new strategies for the national adaptation, updating and dissemination of trustworthy guidelines: Results from the Norwegian adaptation of the American College of Chest Physicians Evidence-based Guidelines on Antithrombotic Therapy and the Prevention of Thrombosis, 9th Edition. CHEST, 2014. doi:10.1378/chest.13-299
  3. Agoritsas T, Heen AF, Brandt L, Alonso-Coello P, Kristiansen A, Akl E, Neumann I, Tikkinen K, van der Weijden T, Elwyn G, Montori VM, Guyatt G, Vandvik PO. Decision aids that really promote shared decision making:the pace quickens. BMJ 2015 350:g7624 doi

The New Statin Choice Decision Aid

By Victor M. Montori

With a new interface that includes versions in English, Spanish, and Chinese, the Statin Choice decision aid (http://statindecisionaid.mayoclinic.org) is out. With over 70,000 uses worldwide year-to-date and new policy endorsements for its use (JAMA Article), the Statin Choice decision aid is helping patients and their clinicians have meaningful conversations about whether to use statins to reduce cardiovascular risk. It helps them adhere to the new guidelines, in a patient-centered manner. And with new work to integrate the tool into all major EHR providers, it may be the best demonstration of meaningful use.

Enhancements from the first version also include two options for printing in the office: color and black-and-white, in addition to the existing option to emailing the tool after its use to the patient, a family member, or another clinician. In terms of new content, the biggest difference is the exclusion of the aspirin component (see below).  We have also beefed up the Documentation tab, an copy-and-paste interim solution before full integration into EHR to enable documentation of shared decision making, a key step toward advancing these conversations as a measure of quality of care.

This version is the result of hundreds of notes suggesting changes and enhancements that result form the experience of using it in practice. We hope to have responded properly. And thank you.

Why was aspirin removed from the latest version of the Statin Choice decision aid?

In response to the new AHA/ACC guidelines for cardiovascular prevention, there has been renewed interest in using the Statin Choice decision aid to translate the recommendations in a patient-centered way.  With this attention, there has been interest from preventive cardiologists in using this tool. They brought to our attention that indeed the evidence about efficacy of aspirin for the primary prevention of cardiovascular disease is inconsistent: clearer effect in men in relation to heart attacks but not stroke, in women about preventing strokes but no so much heart attacks and a series of negative trials in patients with diabetes and peripheral vascular disease have made it difficult to provide a simple message to all at-risk patients: a baby aspirin can reduce your risk of cardiovascular events. Also, emerging evidence suggests that the risk of bleeding with aspirin goes up as the risk of cardiovascular events, such that those who may benefit the most are also most likely to be harmed (although most aspirin bleeds are relatively inconsequential compared to a heart attack or a stroke).

This inconsistency is reflected, for example, in the US Preventive Services Task Force guidelines: http://www.ahrq.gov/professionals/clinicians-providers/resources/aspprovider.html.

Concerns are best reflected in this FDA advisory against primary prevention with aspirin from May 2014: http://www.fda.gov/Drugs/ResourcesForYou/Consumers/ucm390574.htm

It is telling when experts are talking more about using aspirin to prevent colon cancer than to prevent cardiovascular events (to our knowledge no one is yet recommending it for this purpose).

We will continue to monitor this evidence as we, the producers of Statin Choice, thought the evidence was good enough to add to and keep in the tool, and we will have a low threshold to put it back in as new evidence emerges, both of its efficacy and harm.

New treatment guidelines consider patient characteristics

A recent article in the Wall Street Journal, Health & Wellness magazine, New Strategies for Treating Diabetes, discusses new guidelines for treatment of Type 2 diabetes which were published in June. The new guidelines suggest patient preferences and characteristics such as age and general health be considered by doctors when treating patients with Type 2 diabetes. The Shared Decision Making National Resource Center has promoted this consideration of patient preferences and individualized treatment plans. Patient decision aids, which are developed through the Center, give voice to the patient, as Dr. Montori points out as important in the article.

Creating shared decision making visuals

There is quite a bit of evidence about best ways to convey risk information to help with policy or clinical decision making. Pictographs and bar graphs along with numbers and descriptions are considered best.  Some emerging research suggests that some elements will help some patients more than others (for instance people with low numeracy).

Recently, Fagerlin, Zikmund-Fisher and Ubel published their decalogue of risk communication in the Journal of the National Cancer Institute.  Their ten steps to better risk communication were:

  1.  Use plain language to make written and verbal materials more understandable.
  2. Present data using absolute risks.
  3. Present information in pictographs if you are going to include graphs.
  4. Present data using frequencies.
  5. Use an incremental risk format to highlight how treatment changes risks from preexisting baseline levels.
  6. Be aware that the order in which risks and benefits are presented can affect risk perceptions.
  7. Consider using summary tables that include all of the risks and benefits for each treatment option.
  8. Recognize that comparative risk information (eg, what the average person’s risk is) is persuasive and not just informative.
  9. Consider presenting only the information that is most critical to the patients’ decision making, even at the expense of completeness.
  10. Repeatedly draw patients’ attention to the time interval over which a risk occurs.

Online software to create pictographs can therefore be quite handy.  Some do so without resorting to giving each “person like you” an anthropomorphic shape .

Our favorite however, is one that shows the outcomes showing visual cues that are easily relatable, based on the iconic smiley face. We are impressed by Dr. Chris Cates’ Visual Rx tool, which is a free online tool that creates “smiley face plots” to depict the impact of a treatment on 100 people.

~Victor Montori, MD

Shared Decision Making Called for by the Situation of Suffering

By Ian Hargraves, Maggie Breslin, Nassim Jafarinaimi

Healthcare, like any care, is the product of what people can do and who they can be for each other in the midst of suffering. The relationship of people attending to suffering finds its most direct expression in contemporary healthcare in the relationship of patient and clinician.  The ways in which these two come together lies at the heart of how we conceive of and organize the healthcare enterprise. If we conceive of the meeting of patient and clinician as rooted in the knowledge and expertise of the medical expert then we may establish paternalistic and patriarchal structures and relationships by which to deploy that knowledge. Beyond this, we may seek to improve and innovate healthcare by heightening the knowledge, technology, and efficiency of the medical expert. Alternatively if, in the coming together of patient and clinician, we focus attention on the demands of the patient who is commissioning and paying for care we may set the suffering person in the role of consumer. Let the buyer beware then becomes the organizing principle, a principle that calls for an empowered patient equipped with authority, information, choice, and control in the face of illness. This is a situation in which we think that if the suffering person would and could only be more—more knowledgeable, more assertive, more discriminating as a purchaser—then illness would be less. There is a third possibility in the coming together of patient and clinician. In this way, the joining of people is called for by the situation of suffering. The reason for healthcare is not the deployment of technical expertise, or the exercise of choice. The reason for healthcare is to attend to the challenges of suffering. This is the reason that in clinic rooms throughout the country and world patients and clinicians sit together, talk, and together take action in attending to suffering or the threat of suffering. In the KER unit, we explore the hypothesis that the medium in which this relationship is made productive and caring is conversation

Shared decision making in adjuvant cancer treatment

Submitted by Marleen Kunneman

Involving patients in a shared decision making (SDM) process is increasingly the preferred approach to making healthcare decisions when more than one reasonable option is available, as is often the case in (neo-)adjuvant cancer treatment. In our recent studies, we aimed to gain insight in the extent to which the three key steps of SDM are followed during clinical encounters on (neo-)adjuvant cancer treatment. Our results showed that the steps of SDM are only followed to a limited extent. Below, we will describe our findings in more detail.

The first step in SDM is to create choice awareness, that is, to acknowledge that there is more than one sensible option available and that a decision needs to be made. We found that oncologists consistently omit the option of forgoing (neo-)adjuvant treatment during clinical encounters, and instead, focus on the one treatment strategy they recommend.1 In only 3 of the 100 encounters analysed, the oncologist indicated that a treatment decision still needed to be made. By that, oncologists miss a crucial opportunity to engage patients and facilitate SDM.

The second step in SDM is to discuss the possible treatment options in more detail. We showed that there is considerable variation between as well as within oncologists in information provision, both in the number and the type of benefits and harms that they addressed.2 The variation could not be explained by patient characteristics. This lack of clarity on which benefits and harms should be discussed during the clinical encounter hampers the process of SDM. For preoperative radiotherapy in rectal cancer, we were able to reach consensus among radiation oncologists and patients on a core list of topics that should always be addressed in the pre-treatment consultation.3 Of note, all items in this core list are long-term benefits and harms of treatment. We assessed congruence between the core list and routine clinical care, and found that patients receive information on fewer than half of the topics from the core list.3 In almost one in ten patients, none of the harms from the core list were addressed. This framing bias toward the beneficial effect of treatment was also found in another study on communication of probabilities.4 Oncologists virtually always mention probabilities of the beneficial effect of treatment, but probabilities of harms often go unmentioned. After the consultation, patients tended to overestimate the beneficial effect of treatment, and to underestimate the probability of harms. This suggests that many patients are overly optimistic and believe that there is no harm in undergoing (neo-)adjuvant treatment.

In the third step of SDM, the patient’s views and preferences should be discussed and considered. We found that less than half of the patients voice their values during the consultation, and only one in five patients voices a treatment preference.5 If patients’ values or treatment preferences had been addressed or if the oncologist had indicated that these were of importance when deciding about treatment, the patient felt that he or she was significantly more involved in the treatment decision-making process.

Our results show that in routine clinical care opportunities are missed to engage patients in a process of SDM. Small changes in doctor-patient communication during clinical encounters can facilitate patients’ involvement in deciding about treatment.

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Marleen Kunneman conducted her PhD research at the Leiden University Medical Center, under supervision of Prof. Anne Stiggelbout, Prof. Corrie Marijnen and Arwen Pieterse and is now a postdoctoral researcher at the Academic Medical Center, University of Amsterdam, the Netherlands. Her research is focused on doctor-patient communication during clinical encounters and shared decision making. Marleen has a Research Collaborator appointment at the Mayo Clinic, where she works with Prof. Victor Montori on assessing the impact of creating choice awareness as a prerequisite for more active patient involvement in clinical encounters.

References

  1. Kunneman M, Engelhardt EG, ten Hove FL, et al. Deciding about (neo-)adjuvant rectal and breast cancer treatment: Missed opportunities for shared decision making. Acta Oncol 2015;(epub ahead of print).
  2. Kunneman M, Marijnen CAM, Rozema T, et al. Decision consultations on preoperative radiotherapy for rectal cancer: Large variation in benefits and harms that are addressed. Br J Cancer. 2015;112:39-43.
  3. Kunneman M, Pieterse AH, Stiggelbout AM, Marijnen CAM. Which benefits and harms of preoperative radiotherapy should be addressed? A Delphi consensus study among rectal cancer patients and radiation oncologists. Radiother Oncol 2015;114:212-217.
  4. Kunneman M, Stiggelbout AM, Marijnen CAM, Pieterse AH. Probabilities of benefit and harms of preoperative radiotherapy for rectal cancer: What do radiation oncologists tell and what do patients understand? Patient Educ Couns. 2015;98:1092-1098.
  5. Kunneman M, Marijnen CA, Baas-Thijssen MC, et al. Considering patient values and treatment preferences enhances patient involvement in rectal cancer treatment decision making. Radiother Oncol 2015;(epub ahead of print).

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’.