SMDM Summer 2017 Newsletter

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FROM THE EDITOR

Dana Alden, PhD

Editor-in-Chief

Ellen Engelhardt, MA

Deputy Editor

by Dana Alden , PhD; The University of Hawai`i

Alright everyone … time to put down your surfboards and ukuleles for a few minutes and enjoy your Summer 2017 Edition of the SMDM Newsletter ! Our members continue to offer interesting and practical insights that are helpful to all of us who care about medical decision making. Whether you’re on a beach, at home, or in your office, spend some time with this issue … you won’t be disappointed!

SMDM President, Angie Fagerlin , begins by stressing the importance of involving patients more in our Society. She argues convincingly that their engagement improves our science by increasing its relevance and suggests that we start by considering greater patient participation in our journal review process and meetings.

In the Newsletter’s first commentary, Beate Sander provides insights into the important roles Society members play in addressing the spread of infectious disease, particularly those like Zika that come onto the scene unexpectedly and spread rapidly. Beate shares three important lessons that she learned as lead researcher on a multinational initiative to tackle Zika in Latin America and the Caribbean. I think you’ll find that her takeaways have implications for many of us who are working on projects in diverse parts of the world. Next, Stephanie Medlock points out that very little emphasis is placed on tailoring of information for the patient-physician dyad in ways that enhance shared decision making. She offers recommendations for improving decision support systems that will benefit both dyad members at the point of exchange. Thereafter, Society for Behavioral Medicine (SBM) member Jada Hamilton , discusses ongoing Crosstalk initiatives between SBM and SMDM. Many of us will remember the Crosstalk sessions that were held by both organizations in 2015. Carrying on that tradition, Jada describes a symposium at the upcoming SMDM meeting in Pittsburgh featuring palliative care, cancer screening communication, and decision science experts. The Crosstalk Program is truly innovative and reflects our Society’s continued commitment to reaching out to and partnering with other organizations in our field.

In our regular Interest Group Commentary , Torbjørn Wisløff and Mike Paulden invite members to join the relatively new “Methods Development in Health Economics” group. Their desire to bring together researchers with diverse and novel approaches to the field is exciting and promising. Finally, Mark Liebow provides updates on proposed cuts to many of the U.S. government agencies that provide support for critical medical decision making research. I think you’ll find his analysis useful as you plan for the future. We look forward to Mark’s continued tracking of the ongoing U.S. health care insurance saga.

Rounding out the newsletter are highlights of the upcoming 2017 SMDM Annual Meeting in Pittsburgh from Co-Chairs, Ken Smith and Janel Hanmer, a very helpful description of numerous career-related opportunities at the Annual Meeting from Career Development Committee Chair, Ava John-Baptiste, and Member News.

As always, Ellen and I welcome your contributions to the Newsletter. Contact either one of us if you have an idea for a Commentary. We’re here to assist you.

Aloha for now,

Dana and Ellen

FROM THE PRESIDENT

by Angie Fagerlin , PhD; Chair of Population Health Sciences, Research Scientist, University of Utah, Salt Lake City VA Center for Informatics Decision Enhancement and Surveillance (IDEAS)

As we develop our plan to implement our strategic aims, one of our objectives is to increase patient engagement across the spectrum of our research and to extend this mission to other societies. We often think of patient engagement in terms of the shared decision making, decision aid and preference elicitation components of our society. Indeed, these areas of our society have made significant inroads to involving patients in the development of our research questions and grants, in the design of our interventions, and in some cases in the writing of our manuscripts. In fact, many of us were doing this before it became cool to do so (or required by funding agencies).

I strongly believe our science has improved significantly with the incorporation of patients into our processes. However, patients can—and should be—incorporated in other areas, including the development of guidelines and in modeling and comparative effectiveness research. I know a number of members are doing so now and it will be exciting to see how collaboration with patients can improve these fields as well.

I believe it is time to begin incorporating patients into our society. Alan Schwartz, our excellent editor of MDM and MDM Policy & Practice , and I have begun to discuss what role patients could have in our review process. Holly Witteman and William Dale have a patient representative, Isabel Jordan, on their planning committee for the 2018 Annual Meeting in Montreal. They are also working to support patients in attending and presenting at our meetings so we can more fully represent all key stakeholder perspectives in our research. Finally, we have a patient representative, Alicia Staley , on our strategic committee that is aimed at improving patient engagement in other societies and missions.

As one of the original societies that has considered and endorsed patients’ and caregivers’ role in medicine, it is critical that we lead in this area. I look forward to seeing our Society improve by incorporating the patients'/caregivers’ perspectives in our journal and in our meetings. By combining the voices of researchers, clinicians, and patients we will continue our significant contributions to the field of medical decision making.

As always, I would love to hear your thoughts either about this or anything else. Please feel free to email me at angie.fagerlin@hsc.utah.edu .

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.

Health Research in the Context of Public Health Emergencies

by Beate Sander, PhD

Infectious diseases are spreading around the world faster than ever and new pathogens are emerging at unprecedented rates, while previously controlled pathogens are re-emerging and pose new threats to public health. The WHO can declare a Public Health Emergency of International Concern (PHEIC) for serious public health events that endanger international public health under the revised 2005 International Health Regulations (IHR). Since the revised IHR were put into place, the WHO has declared four PHEICs: H1N1 influenza (2009), Polio (2014), Ebola (2014), and most recently, Zika virus (2016).

Research plays an important role prior to, during, and after a public health emergency. The unique features of a PHEIC call for immediate, coordinated approaches to research that can inform the immediate response as well as long-term policy decisions and programmatic approaches. The Global Research Collaboration for Infectious Disease Preparedness (GLOPID-R), a network of research funding organizations, was established in 2013. Its aim is to facilitate an effective research response to new or re-emerging infectious disease outbreaks with pandemic potential; the Zika outbreak triggered GLOPID-R’s first response. First detected in Brazil in May 2015, Zika virus has spread rapidly throughout the range occupied by Aedes aegypti mosquitoes in Latin America and the Caribbean (LAC). As a GLOPID-R member, CIHR (Canadian Institutes of Health Research) launched a call for Zika research in Spring 2016.

I am the lead of one of three projects funded through this initiative. Our research project brings together a multi-disciplinary international team from Argentina, Canada, Colombia, and Ecuador to assess mosquito control measures and provide decision-makers with a tool to rapidly determine optimal intervention strategies through field studies and computer simulation. Global health research in a PHEIC raises several interesting questions on forming and structuring research collaborations and partnerships across countries, projects and disciplines, and how to maximize impact under time and budget constraints. Based on my specific experience, here are three observations I think are worth thinking about, not only in the context of PHEICs but also in health research more broadly:

First, this was a joint call with the International Development Research Centre (IDRC) and as such, applicants were required to partner with LAC researchers and 50% of the awarded funding would go directly to LAC partners. I greatly value the CIHR/IDRC commitment to research partnership through these measures. This approach mitigates power differentials and facilitates building true partnerships, despite being more challenging upfront (e.g., identifying partners, building trust, aligning interests and building a team during grant application without being able to meet in person).

Second, the call was part of GLOPID-R’s Zika response, fostering research collaborations across international teams. GLOPID-R’s goal to align research and build collaborations was facilitated with a face-to-face meeting in November 2016 in Sao Paulo, Brazil. I believe it is crucial to engage with other research teams early in the research process and coordinate efforts. For example, we launched a working group to harmonize data collection and analysis protocols for vector studies (mosquito collection, surveys, laboratory testing, etc.) to enable future data sharing across research teams.

Third, the initiative has a strong data-sharing component. Harmonization of study protocols and data sharing is essential during PHEICs. It is also likely the most difficult to implement. Following a consensus statement by more than 30 leading international stakeholders, development is underway of core principles for data sharing in PHEICs for rapid and open data sharing, balancing access, ethics, timeliness, quality and equity. The secondary use of existing data (including routinely collected data and data collected for other research projects) is relatively straightforward with processes in place for privacy impact assessments, ethics approvals, data sharing agreements, etc. However, if the goal is to combine data to increase sample size or geographic coverage (as in the case of Zika research), a number of issues warrant consideration: agreement on minimum datasets across studies; a priori harmonization of study protocols to facilitate data analysis; development of data management plans; identification of potential additional funding for data cleaning, conversion and metadata; and design of a publication plan.

There are many challenges related to health research in PHEICs but also tremendous opportunities to be part of the conversation on the research enterprise’s impact on policy decision making, and ultimately population health. While more acute in a PHEIC, many questions apply equally to non-PHEIC situations. I’m looking forward to many engaging discussions.

Decision Support for Shared Decision Making

by Stephanie Medlock, PhD; Postdoctoral Researcher, Department of Medical Informatics at the University of Amsterdam, Netherlands

When we think of decision support, we often think of the reminder messages that pop up, warning us about a possible drug interaction or reminding us that Mrs. Smith is due for her diabetes screening. But decision support can be any computerized tool that helps in making clinical decisions. This includes tools that filter and summarize information, call attention to potential problems, or provide information directly to patients.

We have long recognized the value of providing patient-specific advice; for example, not just showing a guideline, but specifying exactly what the doctor needs to do for a specific patient to ensure that the guideline is followed. Our recently published Two-Stream Model (Figure 1; Medlock S . et al. , 2016, J Am Med Inform Assoc.) emphasizes the role of the user : the person who needs to use the advice. We suggest that an intelligent system should not only reason about the patient to provide patient-specific advice, but should also be user-specific : that is, the advice should be tailored so it can best be used by the person who is receiving it. The way we modify the advice is based on cognitive-behavioral knowledge , or knowledge of how decisions are made with and without computer support. For clinicians as users, this might mean modifying the way advice is presented based on their specialty, or based on research in clinical decision making for particular decisions. For the patients, this might mean adjusting the presentation based on health literacy or decision-making style.

Figure 1: A simplified version of the Two-Stream Model. Decision support systems uses clinical knowledge to provide patient-specific advice. We suggest that they could also use cognitive and behavioral knowledge to provide advice tailored to the user, whether that's a clinician, a patient, or both the clinician and patient participating in shared decision-making.

But what if the user is not just a patient or a clinician, but both? How can we use this model to inform the design of systems that support shared decision making?

The simple view would be to say that we view the patient and clinician as separate users, and adjust the system based on each of their preferences. However, it is likely that the clinician and patient together will approach a decision differently than they each would separately – that in fact, the patient-doctor team in shared decision-making is a new kind of "user." If we study the way that clinicians and patients make decisions, we can learn what kind of support they need to make this process better and easier, and then design systems that provide that support. For example, if the patient sees that on the doctor's computer screen there is a "patient choice" section, he or she may be more confident in taking an active role in the process.

Better knowledge of how shared decision making differs from separate decision making, and the information needs during this process, will help us make more effective systems to support that process, and ultimately facilitate a better decision-making process for clinicians and patients together.

Update on Crosstalk Efforts between SMDM and the Society of Behavioral Medicine

by Jada G. Hamilton, PhD, MPH

The Society for Medical Decision Making (SMDM) and the Society of Behavioral Medicine (SBM) are both dedicated to understanding and improving people’s health-related decision making. Given these shared interests, members of these societies have worked together since 2010 to foster crosstalk between the societies. In 2014-2015 the “Crosstalk Committee” organized a pair of corresponding sessions at the 2015 SBM and SMDM meetings to address the unresolved issue of what makes a good medical decision. The perspectives shared in these sessions were summarized in a manuscript titled, “What is a good medical decision? A research agenda guided by perspectives from multiple stakeholders” and published in an SBM-sponsored special issue of the Journal of Behavioral Medicine in 2017.

To continue fostering dialogue between these societies, the Crosstalk Committee (including SBM members Jada Hamilton, Sarah Lillie, Christine Rini and Erika Waters, and SMDM members Sarah Lillie, Laura Scherer, and Erika Waters) is developing sessions for the upcoming SMDM and SBM annual meetings. These sessions will examine the issues of overdiagnosis (diagnosis of a medical problem that would have not caused harm) and overtreatment (use of treatments that do not improve wellbeing or lengthen life). Overdiagnosis and overtreatment are increasingly recognized as problems in various healthcare and disease settings. Yet, less is known about how to best communicate the newly recognized risks and uncertainties of previously-recommended medical interventions, or how to help patients and healthcare providers make decisions in this context.

The first of these sessions will be held at the 2017 SMDM meeting on October 24th. This symposium will feature world experts in palliative care, cancer screening communication, and decision science to provide diverse perspectives from across the healthcare continuum. Dr. Robert Arnold, Chief of Palliative Care and Medical Ethics at the University of Pittsburgh, will speak about overtreatment at the end of life. Dr. Jesse Jansen, Senior Research Fellow at The University of Sydney, will discuss the complexities in communicating about overdiagnosis in cancer screening. Finally, Dr. Baruch Fischhoff, the Howard Heinz University Professor in the Department of Social and Decision Sciences at Carnegie Mellon University, will provide a basic decision science perspective, discussing the potential for, as well as barriers to, using decision science to address overtreatment and overdiagnosis. The session will be moderated by Dr. Barry Kramer, Director of the Division of Cancer Prevention at the National Cancer Institute.

The Crosstalk Committee looks forward to this opportunity to hear the SMDM community’s perspectives regarding these vexing challenges facing patients and healthcare providers, and to continue the discussion of these issues with a similar session at the 2018 SBM annual meeting.

Citation: Hamilton, J. G., Lillie, S. E., Alden, D. L., Scherer, L., Oser, M., Rini, C., Tanaka, M., Baleix, J., Brewster, M., Craddock Lee, S., Goldstein, M. K., Jacobson, R. M., Myers, R. E.., Zikmund-Fisher, B. J., & Waters, E. A. (2017). What is a good medical decision? A research agenda guided by perspectives from multiple stakeholders. Journal of Behavioral Medicine, 40(1), 52-68).

Torbjørn Wisløff, MSc, PhD

Mike Paulden,
PhD, MSc, MA

Methods Development in Health Economic Evaluation Interest Group Welcomes Your Participation!

by Torbjørn Wisløff, MSc, PhD and Mike Paulden, PhD, MSc, MA

At the 2015 SMDM meeting in St. Louis, SMDM members formed a new Interest Group (IG) entitled, “Methods Development in Health Economic Evaluation.” An important goal of the new IG is to bring together researchers who are interested in developing new methods that will assist researchers, practitioners, and policymakers in the medical decision making field. SMDM has a long and prominent history within this field and we hope to contribute by bringing together talented researchers who are just getting started as well as those who are more experienced.

In 2016, the Interest Group held meetings during SMDM conferences in both London and Vancouver. We look forward to coming together in Pittsburgh this fall. During our meetings, we have focused on one or two specific topics that are relevant to IG members. For example, we discussed the relevance of medical decision making criteria outside of traditional health economic evaluation and the potential for a unified modelling framework.

In addition, participants have briefly introduced themselves and described their interests. We hope that these small informal meetings will help new attendees make faster connections with researchers who have similar interests. We also hope that these meetings can spark discussions and future research collaborations.

Experiences from the first two meetings indicate that we can continue to improve the form and content of these gatherings. Your suggestions are always welcome, so feel free to email us at twisloff@gmail.com or just attend our meeting. Remember that SMDM Interest Groups are open to all members. See you in Pittsburgh!

Medical Research, Clinical Care Facing Deep Cuts in U.S.

by Mark Liebow, MD, MPH, Mayo Clinic

The Trump Administration’s budget proposal asks for a $5.8 billion cut in the budget of the National Institutes of Health (NIH), an unprecedented 18% cut, for Fiscal Year 2018, which begins October 1. It also asks for a 17% cut in the Center for Disease Control and Prevention’s budget and an 11% cut in the National Science Foundation’s budget. Other research agencies are also facing potential budget cuts. The proposal recommends transferring the Agency of Healthcare Research and Quality (AHRQ) into the NIH. Many research agencies, especially, the NIH, have strong constituencies in Congress so it is unlikely there will be such severe cuts, but this makes flat funding or small cuts much more likely, especially because of sequester limits. Even flat funding compromises the work of the agencies because every year there are more applicants for grants and inflation erodes the value of the funding.

AHRQ isn’t going to experience any changes this year since it would take multiple modifications of the authorizing legislation, which is extremely implausible, before that can happen. Indeed, many in DC will be surprised if appropriations bills are passed into law by regular order. Instead, continuing resolutions or an omnibus bill with numbers based on Fiscal Year 2017 appropriations seem more likely.

In May, the House of Representatives passed 217-213 the American Health Care Act (AHCA) with deep cuts to Medicaid and to subsidies for private insurance along with repeal of employer and individual mandates. Senators announced they would be writing an entirely new health care bill. But when it was announced on June 22, the Senate’s Better Care Reconciliation Act (BCRA) looked a lot like the House bill. Both are expected to cause over 20 million people to lose health insurance and shift billions of dollars in Medicaid costs to the States over the next few years. These changes would almost certainly devastate the finances of most academic medical centers, forcing them to pull back on research and education programs as their clinical income falls. The Senate did not consider the bill before its July 4 recess, apparently because there were not 50 Republican Senators who would vote for it. All 46 Democratic and both independent Senators oppose it. There’s a lot of discussion over the July 4 recess about how changes could be made to get enough support to pass the bill, but it’s not clear how the bill can be changed to get those 50 votes. Even if it passes, it will have to be reconciled with the House bill, which will be a politically challenging task. We’ll have more in the next newsletter.

MEETING & SOCIETY NEWS

When you think of Pittsburgh, Don’t Think of Paris, Regardless of Recent News Items

by Co-Chairs: Ken Smith, MD, MS, FACP and Janel Hanmer, MD, PhD

Instead, think about the upcoming 2017 SMDM Annual North American Meeting in Pittsburgh, being held October 22-25. Beyond the usual mix of strong science, earnest mentorship and enlightening interactions, this year’s meeting will feature, most notably, a keynote address by Kathleen Sebelius, the former US Secretary of Health and Human Services, in support of the meeting theme, Better Decisions through Better Data Processes. Lively symposia will further explore the opportunities and challenges presented by present wealth of available health care data, the need to manage and interpret this information wisely, and the responsibility to communicate it honestly and usefully to patients, caregivers, and other stakeholders. As always, Sunday short courses will showcase excellent teachers conveying both fundamental concepts and cutting edge techniques in a relaxed, learning-friendly environment.

This year’s social event will be held at Il Tetto, a rooftop bar/restaurant within easy walking distance of the Wyndham Grand Downtown, the meeting hotel. Offering "Italian with a twist" dishes, craft cocktails and beautiful views of Pittsburgh's skyline, this year's social event promises an evening we won't soon forget. Outside of regular meeting activities, Pittsburgh's highly-rated restaurants, museums, and other attractions will be available through Dinners with Experts and pre- and post-meeting Events with Locals. Plans are afoot for a pre-meeting Saturday evening traveling happy hour in the trendy East Liberty section of Pittsburgh, as well as a choice of Wednesday post-meeting tours of the Andy Warhol Museum or of local breweries.

In all, the 2017 SMDM Annual North American Meeting in Pittsburgh should be illuminating, energizing, and fun. Pittsburgh is a revitalized and welcoming city, with much to see and do. Come join us!

Learn more about the SMDM 39th Annual Meeting

Career Development Opportunities at the 2017 Annual Meeting

by Ava John-Baptiste, PhD, SMDM Career Development Committee Chair

The SMDM Career Development Committee is excited to offer a range of career development activities. Be on the lookout for sign-up information in the coming months.

One-to-One Mentoring Program:
The Career Development Committee facilitates the matching of mentees to mentors based on research interests. This is a great opportunity for trainees, junior faculty, and new members to meet individually with long-standing members of the Society. Please contact Austin Nam ( austin.nam@mail.utoronto.ca ), Jesse Elliott (jcrai065@uottawa.ca) or Teresa Tsui (teresa.tsui@utoronto.ca) with queries.

Dinners with Experts:
We invite you to attend informal group dinners hosted by senior members of the Society on Sunday, October 22 and Tuesday, October 24. The dinners are self-pay. Please contact Austin Nam ( austin.nam@mail.utoronto.ca ), Jesse Elliott (jcrai065@uottawa.ca) or Teresa Tsui (teresa.tsui@utoronto.ca) with queries.

Trainee Luncheon:
This lunch, held on the first day of the meeting, is a wonderful opportunity for trainees to meet and talk informally with each other and with senior members. Conversations continue over the course of the meeting. Sign up for the lunch with meeting registration. Please contact Tara Lavelle (TLavelle@tuftsmedicalcenter.org) with queries.

CV and Job Book:
Are you on the job market? Are you hiring? We welcome your submission. The CV/Job book will be made available via e-mail, SMDM Connect, and through the meeting app. Please send submissions to David Chartash (dchartas@indiana.edu) or Cara McDermott (cmcdermo@fredhutch.org) by September 29.

Career Development Panel:
Panelists from health-related industries and research organizations will discuss how SMDM members can position themselves for a career in a variety of settings. Please contact Shiyi Wang ( shiyi.wang@yale.edu ) or Logan Trenaman ( logantrenaman@gmail.com ) with queries.

Nominations Open for Naming Individual Category Awards for the
Lee B. Lusted Student Awards

SMDM is seeking nominations for naming the set of awards currently known collectively as the Lee B. Lusted Student Awards. In the past few years, there have been changes to this set of awards to recognize specific research topics. Moving forward, SMDM seeks nominations for naming the awards for the individual categories and aims to identify a named set of awards that reflects the diversity of our SMDM community as well as the diversity of our research as a Society.

Candidates for named awards will be evaluated according to the following criteria:

Made a seminal contribution to the field
Ongoing contributions/involvement with the Society
Role in teaching and mentoring

Nominations should be less than one page and include the nominee's CV. Please submit your nominees by Monday, August 7, 2017 by completing a brief nomination form via the button below.

The new set of awards will be known as the Lusted Awards, with individually named awards in each of the 5 categories:

Applied Health Economics
Decision Psychology & Shared Decision Making
Health Services, Outcomes, and Policy Research
Patient and Stakeholder Preferences and Engagement
Quantitative Methods and Theoretical Developments

Submit Your Nomination

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