Symposia Information

Tuesday, October 20, 2020

How many experts can you fit in a decision aid?: The challenges of diverse contributors in a decision-making tool
12:30pm - 2:00pm ET | 4:30pm - 6:00pm UTC

Osteosarcoma is a form of bone cancer that often occurs around the knee joint during rapid bone growth in childhood and adolescence. In addition to chemotherapy, standard treatment includes surgery to remove the tumor. There are three surgical options – amputation, rotationplasty, limb salvage surgery - each of which has different risks and benefits as well as very different physical appearances. The risk for recurrence is similar for each option.

Patients and parents need to engage in making surgical decisions with their providers but often feel unsure about their role and overwhelmed with information. Some families understand there were options and regret not being involved in a decision made by their provider. In oncology, there are optimal times for shared decision-making with patients, families, and physicians but shared decision-making doesn’t always occur. In cases, such as these, a decision aid is needed. Surgical decision-making can be a complex process with life-long limitations; this type of decision aid requires input from diverse experts in evidence-based medicine, patient-reported outcomes, and decision science.

This symposium draws from the interdisciplinary members of the Osteosarcoma Decision Aid Medical Advisory Team (O-DAMAT). The presentation maximizes the expertise of physicians and researchers in medicine and the social sciences as well as expert patients who will give short talks about what makes a successful collaboration of people with very different skill sets. Challenges will be explored as well as methods to address these challenges in a moderated interactive discussion with audience members. Attendees will gain a deeper understanding for how to engage and manage stakeholders in the development of tools to address knowledge gaps for shared decision-making.

Peter Anderson, MD, PhD, Cleveland Clinic, Cleveland, OH; Angela Fagerlin, PhD, University of Utah, Salt Lake City, UT; Victoria Shaffer, PhD, University of Missouri, Columbia, MO; Janet Panoch, MA, PhD candidate, IUPUI, Department of Communication Studies, Indianapolis, IN; Katie Greenzang, MD, EdM, Harvard Medical School; Laura Ellingson, PhD, Santa Clara University; Kurt Weiss, MD, University of Pittsburgh


Lessons to Serve a Growing Purpose of Economic Evaluation in the U.S. in the 2020s|
1:00pm - 2:30pm ET | 5:00pm - 6:30pm UTC

Goal: To Bring Together Multiple Stakeholders views' on value assessment and finding a collective purpose for economic evaluation across the U.S. in this new decade.

Synopsis: The U.S. may be the only Western country not to apply economic evaluation to healthcare decision-making on a national level, yet it excels at spending least efficiently on healthcare for its population. In the interest of continuing to develop new solutions to curb spending on healthcare and reduce waste in the U.S., perhaps now is a better time than ever to reconsider the benefits of economic evaluation and the barriers that must be overcome to have it emerge as a solution, not a detriment, of healthcare institutions and the patients that they serve. We offer several distinct considerations in order to make economic evaluation methods (e.g. cost-effectiveness analysis) an effective component in the future of value-based decision making in U.S. healthcare. These considerations, including the barriers presented by opportunity costs of social welfare programming, phasing out low-value care alternatives, and improving transparency of benefit coverage need to be overcome in order to achieve a collective purpose for economic evaluation at state and national levels throughout commercial, private and government-run health systems and yield adoption of high-value care alternatives.

Panelist: Ankur Pandya, PhD, Center for Health Decision Science, Department of Health Policy and Management, Harvard T.H. Chan School of Public Health, Boston, MA

Moderator: William Padula, MS, PhD, Armstrong Institute for Patient Safety and Quality, Johns Hopkins Medicine, Baltimore, MD

Discussants: Rena Conti, PhD, University of Chicago, Chicago, IL; Natalie Reid, PhD, MPH, MBA, Monument Analytics, AL


Networks to Improve Medical Decision Making
2:00pm - 3:30pm ET | 6:00pm - 7:30pm UTC

Research is an intrinsically collaborative enterprise with many funding agencies highlighting the importance of collaboration across diverse research teams to enrich science and practice. Creating formal collaborative networks involving individuals with various perspectives, e.g., methodologists, clinicians, applied researchers, patients and their family members, teachers and other stakeholders, can enrich medical decision making and improve patients’ outcomes. However, creating these networks and relationships can be challenging, especially for early career researchers or researchers looking for collaborative opportunities outside of their immediate research interests. Thus, this symposium aims to emphasize the importance of creating formal collaborative working relationships in this community and encourage the creation of collaborative networks across geographical regions, career stages and disciplines within the medical decision-making community.

Firstly, panelists, who are members of four diverse networks within the SMDM community, will share their experiences of collaboration. The panelists will highlight the networks’ aims and structures, stress their impact on medical decision making, and also outline associated challenges. More specifically, the panelists will present:

  • The aim and structure of their network

  • The origins and strengths of the network

  • How the network has improved medical decision making

  • The challenges associated with setting up and/or maintaining the network

Following this discussion, we will highlight techniques that act as barriers and facilitators to the development of connections within a large group setting. Attendees will then be invited to explore the room and implement these new strategies in an “academic speed dating” exercise.

Panelists: Anna Heath, PhD, University of Toronto, Toronto, ON, Canada; Petros Pechlivanoglou, MSc, PhD, Toronto, ON, Canada; Ruth Ndjaboue, PhD, Laval University, Quebec, QC, Canada; Eric Feuer, PhD, National Cancer Institute, Bethesda, MD
Moderator: Natalia Kunst, MSc, University of Oslo, Faculty of Medicine, Department of Health Management and Health Economics, Oslo, Norway


Theories of Medical Decision Making
2:30pm - 4:00pm ET | 6:30pm - 8:00pm UTC

The proposed symposium surveys the latest rigorous theories of medical decision making. We build on an earlier symposium and workshop sponsored by the Society. The symposium was very well attended and produced a highly cited special issue of Medical Decision Making in 2008. More than a decade later, substantial progress has been made in explaining and enhancing medical decision making. This work is an essential complement to the technical acumen of members of the Society. That is, accurate measurement and effective interventions in medical decision making require scientific theories of the causal mechanisms that underlie attitudes, decisions, and behaviors. The time is ripe to provide an overview of leading theories for members of the Society with an emphasis on empirical validation.

Thus, one goal of the proposed symposium is to provide a curated entrée to decision theories that facilitates their uptake by medical decision-making researchers. The other goal of the symposium is to spur innovation on important issues in which understanding why behaviors occur has been a major impediment to making progress in public health and medicine. The potential to unlock human potential, leveraging massive research accomplishments to prevent and combat disease, is enormous. As before, we have surveyed distinguished members of the Society to elicit a variety of perspectives on which theories are the best in the field, emphasizing those with supportive scientific evidence. We are also working with granting agencies and foundations to solicit input about successful grantees. Involving such agencies and foundations will be pivotal for developing funding. We anticipate three to four speakers and a commentator. Listening and integrating across theoretical perspectives will be encouraged to spark fruitful new directions in research.


Tuesday, October 27, 2020

Including the Perspectives of Patients in Value Assessments
8:30am - 10:00am ET | 12:30pm - 4:30pm UTC

Cost-effectiveness analyses (CEA) is the most common method for health economic value assessment in the U.S. and world-wide, with most guidelines advocating for the use of a cost-per-quality adjusted life year (QALY) as the primary outcome measure. However, this value framework may be too narrow to incorporate all outcomes that are important to patients, caregivers, and other stakeholders. Recent initiatives have focused on ways to expand traditional value frameworks to incorporate a broader set of value elements that may more comprehensively assess the value of these therapies.

This panel will focus on ongoing initiatives aimed at incorporating the perspective of patients and other stakeholders, including caregivers, into economic value assessments:

  • Sara Emond will discuss the methodology used by the Institute for Clinical and Economic Review (ICER) for incorporating the perspectives of patients, families and other stakeholders into their value assessments, and how this process has evolved since ICER began its value assessment work in 2007.

  • Phyllis Foxworth will discuss the work that she and her colleagues have done at the Depression and Bipolar Support Alliance (DBSA) to identify the treatment outcomes that are most important to individuals living with mood disorders, her work with ICER, and her perspective on developing value assessments that more fully reflect the outcomes that are most important to patients and their families.

  • Tara Lavelle will discuss her work developing a patient-centered value framework based on stakeholder engaged research with individuals living with major depression. She will also discuss her work eliciting the impact of illness on caregivers, and her methodological work to understand the importance of including these “family spillover” effects in cost-effectiveness analyses.

  • Mel Whittington will discuss her work on engaging patients as part of a multiple criteria decision analysis. She will discuss the findings from a recent patient focus group and survey to identify patient-informed criteria to be included in a value assessment.

Joey Mattingly will serve as a moderator and will engage the panel and audience in a discussion on the evolving methods for integrating the patient voice in health economics and outcomes research, and the implications of this work.

The overarching goal of this panel is to promote engagement and collaboration between researchers, policy makers, clinicians, and patients to develop economic value assessments that take into account the important perspectives of patients, their families and other stakeholders.

Panelists: Tara Lavelle, PhD, Center for the Evaluation of Value and Risk in Health, Tufts Medical Center, Boston, MA; Melanie Whittington, PhD, University of Colorado Anschutz Medical Campus, Aurora, CO; Phyllis Foxworth, Depression and Bipolar Support Alliance (DBSA), Chicago, IL; Sarah Emond, MPP, Institute for Clinical and Economic Review (ICER), Boston, MA

Moderator: Joey Mattingly, PharmD, MBA, PhD, University of Maryland School of Pharmacy, Baltimore, MD


Building and maintaining researcher-participant relationships in a virtual world: The case of electronic consent
9:00am - 10:30am ET | 1:00pm - 2:30pm UTC

In clinical research, traditional researcher - participant relationships are being re-envisioned due to the growing adoption of electronic approaches designed to engage, educate, and promote informed research decision making. One such example is electronic consent, which is increasingly being utilized in large-scale research where in-person consent is not feasible. Electronic consent approaches also provide participation opportunities to those traditionally underserved in clinical research. Developing a robust approach to education and trusting relationships between the research team and participants are just as vital in the digital space as in traditional, in-person decision making scenarios. However, what does it mean to have a relationship with a virtual representation of an investigator and/or a study team? Core components of relationships can remain the same but how these relationships are envisioned and operationalized and maintained need to be adapted. As such, placing a traditional written consent on an electronic screen will not maximize use of the technology, advance relationship building, nor best promote informed choice. Instead, electronic consent models can incorporate a range of approaches to present the required elements for informed consent, such as multimedia components including audio and video that ‘humanize’ the process. They can also incorporate decision support components such as values clarification and other deliberation activities to foster engagement. Trust in the information provided can be garnered through presenting information in a transparent and accessible manner related to uncertainty, risks, and benefits; through a high-quality user experience; by providing a ‘face’ to the research; and through allowing opportunities for prospective participants to interact with the study team as desired via telephone, email, and online chat functions. User-centered design that promotes alternative learning formats and low-literacy approaches can also increase trust and improve the relationship between the potential participant and the study.

In this symposium, RTI International and Sage Bionetworks will present electronic approaches currently being implemented for large-scale consent. The symposium will employ an interactive format that integrates our real-world examples through the lens of ethical, social, and legal implications. Group discussion will include methods used to build virtual relationships between the potential participants and the research team/study, how those methods have performed and measured, and deliberation about a research agenda to advance the ability of electronic consent to facilitate trust in research, increase access, and provide a robust alternative to in-person consent for clinical research.

Panelists: Holly Peay, PhD CGC, RTI International, Research Triangle Park, NC; Nancy King, Wake Forest School of Medicine, Winston-Salem, NC


Partnering to Co-Produce Care Plans
10:00am - 11:30am ET | 2:00pm - 3:30pm UTC

Cystic Fibrosis (CF) is a rare, life-shortening genetic disorder affecting approximately 30,000 people in the United States. Patients visit specialty clinics quarterly for optimal team-based care. Yet, patients and families can experience barriers to self-care management in between visits, including difficulty maintaining work/life/health balance due to long, daily medical routines, a lack of clarity about treatment protocols and procedures, fragile life circumstances, and high medical expenses. As a result, developing strong partnerships with their providers that include open and honest conversations is crucial for optimal disease management.

Our panel will share key facets of a quality improvement (QI) project that utilizes a co-production tool, developed by an adult living with CF, intended to facilitate responsive partnerships to improve patient outcomes. The tool's purpose is to shift the clinical encounter from a provider-driven exchange to a patient-centered one. Rather than dictating treatment plans to patients, providers can address the specific concerns of patients, which are noted on the document prior to the encounter; likewise, patients can ask questions of the provider’s therapeutic agenda and rationale, also noted on the document during the encounter, to better understand their providers’ suggested clinical direction. The tool facilitates treatment plan adjustments that are made simultaneously and collaboratively at the visit.

This QI project builds upon one clinic’s use of this tool since September 2018. The project team is now piloting the tool at two other clinic sites. The project’s goal is to provide a change package for use in all 268 CF programs in the US. The team developed a training session for providers that enables them to use the tool effectively. Preliminary qualitative data indicates that providers’ and patients’ goals do not consistently align and, therefore, adjustments are necessary to produce a care plan that both parties find feasible and effective. At the same time, patients experience less anxiety about adequately remembering their treatment plan post-visit because they took part in constructing it. The tool has shown to facilitate bi-directional, communication and productive shared decision-making.

The panel will have four speakers:

  • Dr. Sufian will discuss the project as practicing co-production on two levels: the project itself as a co-produced effort and the co-production tool itself;

  • Ms. Brown will discuss the tool as useful for chronic disease care;

  • Dr. Prickett will share details about the formation of the project’s change package and how shared decision-making improves the clinic experience; and

  • Dr. Walker will focus on the process of piloting the co-production tool and how it reshaped relationships within her care team and built partnerships with her patients. This QI project was made possible with support from the Cystic Fibrosis Foundation.

Panelists Georgia Brown, Cystic Fibrosis Reproductive and Sexual Health Collaborative, Cincinnati, OH; Sandy Sufians, MPH, PhD, Department of Medical Education and Department of Disability and Human Development, University of Illinois-Chicago, Chicago, IL; Patricia Walker, The Mount Sinai Hospital, ABC, AL; Michelle Prickett, MD, Adult CF Clinic, Northwestern Memorial Hospital


Intergenerational Decision Making: The Role of Family Relationships in Medical Decision Making
10:30am - 12:00pm ET | 2:30pm - 4:00pm UTC

Shared decision making and communication between healthcare providers and patients is a common research topic. However, intergenerational relationships between family members play an essential but complex role in medical decision making and receive much less attention as a research area . Individuals from different generations are both involved in and impacted by decisions, making this an important area to study. This symposium will focus on these relationships and consider how to best integrate them into future work in medical decision making.

In this engaging symposium, presenters will share different perspectives on and types of intergenerational decision making. Each presenter will speak for 5-8 minutes. Between presenters the moderator will engage the panel of speakers in a talk-show like discussion about each topic and how they relate to the other work presented.

To explore the pediatric patient-parent relationship, Ellen Lipstein will share her research on the different perspectives parents and adolescents within the same family have about the role each family member should play in medical decision making. She will specifically address autoimmune conditions (e.g. irritable bowel disease) and transgender medicine. Moreover, a family of a child with a chronic condition from the Chicago area will share their views on the role family relationships have played in decisions related to their child’s chronic condition. We will work with Carolyn Foster, an Assistant Professor of Pediatrics at the Feinberg School of Medicine at Northwestern University and Lurie Children’s Hospital to identify a family from the Lurie Children’s Family Advisory Board with whom she works closely.

On the adult care side, Djin Tay will discuss an Advanced Care Planning intervention for patients and their adult caregivers. She will share results from a pilot study of an original advanced care planning intervention for shared decision making between older adult home health patients and their caregivers. The intervention reduced decision uncertainty, improved caregiver perceptions of effective decision-making, and improved decision alignment between patients and caregivers.

Eve Wittenberg will provide an overview of spillover effects—the health related quality of life and economic impact of medical conditions on family members other than the patient. Her talk will define spillover effects, address the causes of spillover, and discuss how spillover has been valued in economic evaluation. She will also discuss how to appropriately consider spillover effects in the context of cost-utility analyses and decision models, opening the door for more family-based (not just caregiver/patient-based) analyses.

Our expert moderator Saadia Sediqzadeh will facilitate discussion among the panelists between each brief talk.

The last 20 minutes will be reserved for an interactive discussion with the audience.

Panelists: Ellen A. Lipstein, MD, MPH, Cincinnati Children's Hospital Medical Center, Cincinnati, OH; Eve Wittenberg, PhD, MPP, Heller School for Social Policy and Mgmt., Waltham, MA, ; Djin Tay, PhD, RN, The University of Utah, Salt Lake City, UT

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