SMDM Spring 2018 Newsletter

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FROM THE EDITOR

Brian Zikmund-Fisher, PhD

Editor-in-Chief

Ellen G. Engelhardt, PhD

Deputy Editor

by Brian Zikmund-Fisher , PhD; University of Michigan

In the last newsletter, we launched the inaugural Scientific Issues in MDM Poll, which focused on member perceptions of cost-effectiveness thresholds.

Our questions asked both about what levels respondents believe are commonly used and about what levels respondents thought should be used. Later in this issue, Elske van den Akker and Wilbert van den Hout provide a short commentary on the results of the poll. While the results are not a scientifically rigorous assessment of the attitudes of practitioners in the field, I do think they are suggestive of some interesting questions relevant to all SMDM members. I encourage you to review their thoughts.

On my part, what struck me the most was the heterogeneity of responses re: participants’ preferences vs. prevailing standards. While there was no consistent bias (roughly one-third wanted lower thresholds, one third wanted higher ones, and one-third were happy with current thresholds), that implies that a majority of respondents felt a disconnect between ideal practice and current practice.

This question is important for all of us to think about, regardless of our research or practice domain: Does our current practice align with what it should be? Reflective practice is essential to improving our actions as researchers and professionals, and it is a foundation of both a learning health system and a safe and effective one. I hope SMDM can support the development of reflective practice both among our members and more broadly. I would like to draw your attention to an opportunity to do just that. Ankur Pandya and colleagues are looking for participants for their survey on cost-effectiveness best practices . Visit the Member News section of the newsletter for more information.

Continuing in that vein, this quarter’s Scientific Issues in MDM Poll focuses on barriers to the implementation of shared decision making. While I don’t think that there’s much argument in this society about the potential value of shared decision making, we also know that real world practice doesn’t often live up to the ideal.

We’d like to get a conversation going regarding implementation barriers for shared decision making techniques, tools, and approaches, and how best to overcome them. Please take just a couple of minutes to reply to the poll and share your thoughts. I’ll be back in the next newsletter with further thoughts and reflections.

Take the Spring 2018 Poll

In addition, I draw your attention to the following features in this issue:

SMDM Vice President James Stahl provides a variety of updates about the Society and its initiatives;
Liesbeth M van Vliet, Inge Spronk, Marianne Heins, and Sandra van Dulmen discuss the preconditions for shared decision making in palliative care;
Muge Capan provides an update on the activities of the SMDM Operations Research Interest Group;
Eva Enns and Eline Krijkamp discuss their work supporting open source tools for health decision science modeling;
Mark Liebow updates on new developments in Washington: will two shutdowns be enough, changes to relevant research budgets and more.

I hope you find these updates enlightening! In addition, please drop either Ellen or me a line if you have thoughts for poll topics or other ideas for making the newsletter more valuable.

FROM THE VICE PRESIDENT

James Stahl,

MD, MPH

by James Stahl, MD, MPH; Dartmouth-Hitchcock Medical Center

Well everyone it is Spring! Despite a few remaining snowdrifts up here in the Green Mountain State, we know it is Spring because it is sugaring season (the maple sap is running!) and they have started to decide to close hiking trails for the next month. Closing trails is like pruning decision tree strategies. Why? Because they are either ridiculous or too dangerous like the trails up here during the shortest and messiest of our 7 seasons – Mud Season. Yes, this is the time of year that hikers and ATVs disappear in the woods with a wet blurp. (FYI, the seasons are Spring, Mud, Black Fly, Summer, Indian Summer, Leaf Peeping and Skiing.)

A lot has been happening with SMDM and it is my privilege to update you.

Meetings

The European Conference has been planned by co-chairs Anne Stiggelbout and Ewout Steyerberg with an exciting program in the beautiful town of Leiden, The Netherlands from June 10 – 12, 2018! The conference special focus will be on Personalized and Value-Based Health Care . The short courses, symposia, abstracts and workshops have been set.

North American meeting planning is also proceeding apace. It will be held in beautiful Montreal, Canada from October 14 – 17, 2018 with a theme of Decision Making Across the Lifespan and is co-chaired by Holly Witteman, William Dale, Isabel Jordan and Beverly Canin .

Of note, SMDM has committed itself to increased patient engagement and is working to adhere to the Patients Included Charter . The European Conference is already certified and we fully expect the Montreal meeting to also meet these goals.

Changes to the Education Committee

Over the past year, former SMDM Vice President Lisa Prosser has led a team to help identify ways we can improve our processes. One of the outcomes of this work was the plan to restructure our Education Committee. The goal is to have the Education Committee be restructured to have more consistency and continued mission, as well as, becoming more of a working committee. In the past, the Education Committee has been chaired by our Vice President. The problem is that the Vice President changes every year and thus the leadership of the committee has changed every year leading to inconsistent follow through and responsibility. Not as frequent as the Trump cabinet but…

We are in the process of seeking candidates for a 3-year term to chair the education committee. Please submit your name to info@smdm.org if you are interested.

Development of Mobile and Online International & Educational Programs

One of the initiatives jointly discussed by the Board of Trustees, the Education Committee, President Uwe Siebert and myself, was to expand and develop a mobile and online educational presence. One of the projects in this initiative was to create a series of short online modular educational pieces.

We officially invite you to submit a 10-minute YouTube education video or your interest in developing one, to the Education Committee. Please e-mail info@smdm.org with your interest. The Education Committee will provide advice and oversight in this process. As we learn what works and what doesn’t work, we hope to expand programming in a modular way and to a wide audience. This initiative serves the long-term goal of increasing both the knowledge in medical decision making and the visibility of our Society. I would keep in mind the words of Blaise Pascal (1657), « Je n’ai fait celle-ci plus longue que parce que je n’ai pas eu le loisir de la faire plus courte. »

Roughly translated – “I would have made this shorter, if I had the time.“

International Development Initiative

Progress is being made under the leadership of President Uwe Siebert , International Trustee Beate Jahn , and 2018 European Conference co-chairs Anne Stiggelbout and Ewout Steyerberg to expand our footprint in Europe as they have landed sponsors and connections throughout Europe.

Fundraising

In the past year, with the hiring of our new management team, our Executive Director, Jill Metcalf has been able to devote more time to fundraising and identifying opportunities for the Society. This has led to one confirmed grant, an invitation to submit a grant request, and discussions with several potential funders.

Journal Update

Our flagship MDM and MDM Policy & Practice are doing very well with a steady stream of excellent submissions.

For those of you who celebrate the holidays, I wish you all a belated Happy Passover, Happy Easter and April Fool’s day, which all coincided as I write this. Please prank safely.

COMMENTARY

The opinions stated in the following commentaries are solely those of the authors and do not reflect the opinions of the Society for Medical Decision Making.

Elske van den Akker, PhD

Wilbert van den Hout, PhD

Varying Thresholds

by Elske van den Akker , PhD; and Wilbert van den Hout , PhD; Department of Biomedical Data Sciences - Leiden University Medical Center, The Netherlands

In cost-effectiveness analysis the difference in costs between an intervention and usual care is compared to their difference in effects. This results in a so-called cost-effectiveness ratio, preferably expressed as cost per quality-adjusted life year (QALY). This ratio can then be compared to a cost-effectiveness threshold to decide whether the intervention is good value for money.

Cost-effectiveness thresholds vary between countries. The short poll in the Winter edition of the SMDM e-newsletter (n=49) shows lower current thresholds in Asia/Australia and higher thresholds in North America, with Europe somewhat in between. Also, within countries reported thresholds vary. This may be due to the lack of explicit thresholds. For example, for North America mainly $50,000 and $100,000 are referenced to and sometimes higher (Neumann et al. 2014). Another cause of variation is the use of additional criteria, as for example a special concern for the worse-off in Norway (Ottersen et al. 2016).

Comparable to the current thresholds, also the preferred thresholds varied between survey respondents, mostly between $20,000 and $150,000. From the limited data in this exploratory survey, the preferred threshold seems to be related to the reported current threshold (p<0.001) and region (p=0.02), but not to familiarity with cost-effectiveness (p=0.77). Moreover, the current practice seems well calibrated: 36% prefers a higher threshold, 39% a lower threshold, and 25% no change.

Establishing thresholds will become increasingly necessary because of more expensive treatments (e.g., expensive drugs) becoming available of which widespread use may exhaust healthcare budgets. In this process, cost-effectiveness information should be used alongside other considerations (such as budget impact, necessity, feasibility, etc.) in a transparent decision making process rather than in isolation (Bertram et al. 2016).

References

Bertram MY, Lauer JA, De Joncheere K, Edejer T, Hutubessy R, Kieny MP, Hill SR. Cost-effectiveness thresholds: pros and cons. Bull World Health Organ. 2016 Dec 1;94(12):925-930. PubMed Central PMCID: PMC5153921.

Neumann PJ, Cohen JT, Weinstein MC. Updating cost-effectiveness--the curious resilience of the $50,000-per-QALY threshold. N Engl J Med. 2014 Aug 28;371(9):796-7. doi: 10.1056/NEJMp1405158. PubMed PMID: 25162885.

Ottersen T, Førde R, Kakad M, Kjellevold A, Melberg HO, Moen A, et al. A new proposal for priority setting in Norway: open and fair. Health Policy. 2016. March;120(3):246–51. 10.1016/j.healthpol.2016.01.012

Liesbeth M

van Vliet, PhD

Inge Spronk, PhD

Marianne Heins, PhD

Sandra van Dulmen, PhD

Supporting Patients to 'Live Until they Die'

Preconditions for Successful SDM in Palliative Cancer Care

by Liesbeth M van Vliet , PhD ( l.vanvliet@nivel.nl ); Inge Spronk , PhD; Marianne Heins , PhD; Sandra van Dulmen , PhD

"You matter because you are you, and you matter to the end of your life. We will do all we can, not only to help you die peacefully, but also to live until you die" - Dame Cicely Saunders, founder of the modern Hospice movement.

The confrontation with a life-limiting diagnosis impacts patients and their loved ones profoundly, evoking emotions such as anxiety and uncertainty. Medical practitioners have a role to guide and support patients in their remaining life journey. But within the current medical era, in which treatment options and decisions are becoming increasingly complex, this is no easy task.

Implementation of shared decision making (SDM) is seen as crucial to ensure patients receive care that enables them to live their life meaningfully until the end. SDM is especially relevant when patients face decisions between (further) aggressive treatments that might prolong life whilst also affecting quality of life or less invasive treatments that focus primarily on relieving symptoms and alleviating suffering.

SDM is associated with positive outcomes in palliative care. Patients who are more involved in decision making rate the quality of clinician communication and received care higher, and there are suggestions that they experience a better quality of life.

Despite the relevance and potential benefits of SDM for the palliative care setting, implementation is sparse and inconsistent. Consultation of Dutch experts (i.e., clinicians, patients, and researchers) identified preconditions for SDM that must be met. These preconditions occur on the level of the organization, professional, professional-patient interaction and the patient (see Figure). Some key preconditions relevant on several levels will now briefly be highlighted.

First, time. Organizations need to create time for SDM to occur. Professionals and patients should be given the opportunity to hold multiple, or longer, consultations, and providing patients with enough time for SDM is also a professional’s responsibility. Such recommendations fit within current worldwide reimbursement initiatives (e.g., via Medicare in the US) to discuss patients’ care preferences.

Second, choice awareness. All relevant treatment options, including the option of not starting or foregoing active cancer treatment, need to be explicitly discussed. In clinical care, the option of ‘no treatment’ seems not to be consistently presented to patients, which might contribute to the current situation in which patients often receive aggressive therapy until the end of life, impairing their quality of life.

Third, good communication skills and tailored information. Ideally, professionals should know something about patients’ background and consider cultural differences. This is in line with patients’ expressed desire to be seen as a person instead of a ‘bundle of symptoms’. Caregivers also need to be acknowledged since they might act as contact person and since discrepancies with patient preferences might exist.

While these preconditions can lay a fruitful foundation for SDM to take place, we should not overlook that not all patients (some suggest up to 30%) are willing or able to be involved in the decision-making process. In such cases, when all treatment options have been discussed, clinicians could elicit patients’ priorities and use these to propose a specific choice.

Recognizing these preconditions may enable a more central role for SDM in clinical palliative care. Ultimately, though, SDM is not an aim in itself, but a stepping-stone towards improved patient outcomes. Assisting patients in making decisions, to support them in living their life until they die, is what counts at the end of the day, and the end of life.

Muge Capan, PhD

Harnessing Data for 21st Century Science and Engineering Using Operations Research

by Muge Capan , PhD; Drexel University

As national reports call for new partnerships to address major changes of the 21 ^st century in health and medicine, there is a growing focus on disruptive transformation in healthcare. Disruptive transformation relies on harnessing data through multi-disciplinary approaches that draw from computer and information sciences, engineering, economic sciences, biomedical and health services research. The Operations Research Interest Group (OR IG) within the Society of Medical Decision Making (SMDM) is a multidisciplinary interest group of professionals that are passionate about taking an analytical approach to this transformation in healthcare. Our membership has grown significantly since the initiation of the interest group in 2015. Our first publication as a group [1] highlights our interest in leveraging rigorous methodologies for complex decision making problems and presents promising future research areas.

Our members are actively working on development and integration of breakthrough ideas in a variety of areas, e.g., diagnosis and treatment optimization for complex health conditions such as sepsis, translating data to knowledge by addressing the seven V’s of big data (volume, velocity, variety, variability, veracity, visualization and value), and advancement of health information technology, such as clinical decision support systems.

We ask the SMDM community - with or without OR background, but with an interest in our mission - to join us as we tackle next-generation decision making problems that require addressing barriers arising from uncertainty inherent to healthcare, heterogeneity of data, and an aging population. Cross-disciplinary collaboration is key to high-risk/high-reward solutions, and being an SMDM OR IG member brings you one step closer to generating value in healthcare through collaboration!

__________________________________________________

[1] Capan M, Khojandi A, Denton BT, Williams KD, Ayer T, Chhatwal J, Kurt M, Mason Lobo J, Roberts MS, Zaric G, Zhang S, Schwartz JS (2017) From Data to Improved Decisions: Operations Research in Healthcare. Medical Decision Making. In Press.

Eline Krijkamp, MSc

Eva Enns, PhD

An Update on the DARTH Workgroup: The Road So Far

by Eline Krijkamp , MSc; Erasmus University at Rotterdam, and Eva Enns , PhD; University of Minnesota, on behalf of the Decision Analysis in R for Technologies in Health (DARTH) workgroup

In a previous newsletter , Fernando Alarid-Escudero emphasized the increasing popularity of Open-Source Software (OSS), such as the R programming language, in health decision sciences (HDS). The use of R or other open-source programming languages facilitates research transparency, reproducibility, collaboration, and accessibility. However, an important drawback to the use of OSS such as R has been its steep learning curve.

To increase visibility and improve accessibility of R in the HDS community, we created the Decision Analysis in R for Technologies in Health (DARTH) Workgroup during SMDM’s 37th Annual North American Meeting. DARTH is an international collaboration of researchers ^[1] who are committed to enhancing the use of the R programming language in the HDS through tutorial papers, short courses, and the development of new user-friendly, open-source tools for HDS modeling.

To date, DARTH has achieved several accomplishments. We published our first article in Medical Decision Making last year summarizing the existing functionality in R for decision analysis. A tutorial paper describing an implementation framework for microsimulation models in R is forthcoming. Tutorial papers on additional topics, such as implementing decision trees and Markov cohort models in R, are in preparation.

A major accomplishment in improving the usability of R for our community was the creation of OpenTree by DARTH member Dr. Hawre Jalal . OpenTree is an online tool and graphical user-interface for interactively building decision trees and Markov models. OpenTree then translates the user-defined model into R code for integration with more advanced functionality.

Pedagogically, we have created extensive course materials on the use of R in HDS, which we offer regularly as short courses at SMDM meetings and as stand-alone workshops for university and industry audiences. We are gratified by our participants’ enthusiasm for these courses and support for more openness and transparency in medical decision making. All of this motivates us to work even harder, with plans to tackle more advanced topics, such as sensitivity analysis, model calibration, and value of information.

Please visit our website for updates on future course offerings and publications or join our mailing list by emailing darth.workgroup@gmail.com .

^[1] DARTH Workgroup members: Fernando Alarid-Escudero , PhD, University of Minnesota; Eva Enns , PhD, University of Minnesota; Hawre Jalal , PhD, University of Pittsburgh; Petros Pechlivanoglou , PhD, The Hospital for Sick Children and University of Toronto; Eline Krijkamp , MSc, Erasmus University at Rotterdam; and Myriam Hunink , PhD, MD, Erasmus University at Rotterdam and Harvard T.H. Chan School of Public Health.

Mark Liebow,

MD, MPH

Will Two Shutdowns be Enough?

by Mark Liebow , MD, MPH; Mayo Clinic

The Federal government partly shut down for a long weekend in January and for a few hours in February, because the continuing resolutions that had permitted the government to spend money expired. The second shutdown led to another continuing resolution that will last through March 23. The better news is that a bipartisan agreement led to setting budget targets for the rest of Fiscal Year 2018 and for Fiscal Year 2019 that were higher than the original targets. While more of the extra spending will go to discretionary defense spending than to discretionary domestic spending, there’s enough new money for the latter category that some research agencies, notably the National Institutes of Health (NIH), should get extra funding. The NIH could get up to $2 billion more over the two years. Budget targets are not appropriations and the Appropriation Committees in the House and Senate are working to decide exactly what every part of the government should get. However, if an appropriations bill isn’t signed by the President by March 23rd, we’ll need another continuing resolution. The bill that ended the February shutdown also extended the Children’s Health Insurance Program (CHIP) for another four years, i.e., through 2028. It raised the debt ceiling, so we don’t have to worry about the government defaulting on its debt for a year or two (or worry about legislators tying obnoxious legislation onto a bill that raises the debt ceiling).

President Trump’s proposed Fiscal 2019 budget proposes less in funding for Federal research agencies. The NIH would absorb three research agencies, including the Agency for Health Care Research and Quality (AHRQ), without additional funding for them. It also proposes a $48 billion cut over ten years to graduate medical education (GME) by consolidating Medicare, Medicaid and Children’s Hospital GME (CHGME) spending in 2016 into a single, capped grant program funded through the annual appropriations process. This would be the biggest change in GME funding in a generation, but it is not likely to pass. Similarly, a proposed $71 billion cut over 10 years in Medicare is unlikely to go far.

Alex Azar was confirmed as Secretary of the Department of Health and Human Services in January. A week later, Brenda Fitzgerald, the Director of the Centers for Disease Control and Prevention resigned because of financial conflicts of interest, including buying tobacco stocks after she became Director. David Shulkin, MD, the Secretary at the Department of Veterans Affairs is in a pitched battle with some of his subordinates there, in part about how much the health care system should be privatized. Right now, the President is supporting Shulkin, but that may not last.

MEETING NEWS

SMDM 17th Biennial European Conference Registration Is Now Open

Early Bird Registration Deadline: Friday 18 May 2018

Registration is now open for the 17th Biennial European Conference, being held 10 -12 June 2018 in Leiden, The Netherlands. Leiden is a beautiful historic city, and only 20 minutes by direct train from Schiphol International Airport. The 2018 conference special focus is on Personalized and Value-Based Health Care .

The Keynote speaker is David Spiegelhalter, PhD , who will focus on Communicating the Potential Benefits and Harms of Treatments in an Impartial Way. The conference will feature over 200 oral and poster abstracts, 10 workshops and 14 short courses spanning several topics in medical decision making as well as a proposed symposium on Prediction Models: From the Model to the Consultation.

The 17th Biennial European Conference is a Patients Included™ conference. Learn more about how the conference meets the five Patients Included charter clauses.

Short courses and the Welcome Reception/Poster Session 1 will be held on Sunday 10 June at Leiden University Medical Center. The general conference will be held from 11 - 12 June at the Stadsgehoorzaal. Join us for a fun night of dinner and dancing at the Social Event, which will be held at the Scheltema on Monday evening 11 June . We hope to see you in Leiden!

Conference Co-Chairs: Anne M. Stiggelbout, PhD and Ewout W. Steyerberg, PhD

Learn More About the 17th Biennial European Conference

SMDM 40th Annual Meeting

Call for Abstracts and Short Courses is Now Open

Deadline: Tuesday, May 15, 2018

SMDM is now accepting abstract and short course proposals to be presented at its 40th Annual Meeting in Montreal, Canada. The deadline to submit proposals is Tuesday, May 15, 2018. All submissions will be reviewed and notifications sent out in late July 2018.

For more than four decades, SMDM members have sought to improve the health care experiences and health of people at every stage of life. There are differences in the health issues confronting people at different life stages, and there are also commonalities bridging different stages. As SMDM reaches middle age and looks ahead to the next 40 years and beyond, the 2018 Annual Meeting will bring together patients, families, health professionals, policymakers, researchers, and other stakeholders to discuss the latest evidence about making better decisions for better health.

The 40th Annual Meeting will be a Patients Included™ meeting, where patients will be in attendance and appear as presenters. Additionally, SMDM is a multidisciplinary society and welcomes attendees such as policymakers. Please do your best to write about and present your work in a way that is understandable to an audience of peers and other experts.

Meeting co-chairs: Holly Witteman, PhD; William Dale , MD, PhD; Isabel Jordan , Parent/Patient Partner and Beverly Canin , Patient Partner

Learn More and Submit a Proposal

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