About Us
DCRI's Preference Evaluation Research Group (PrefER) faculty and staff are recognized thought leaders in applying cutting-edge quantitative stated-preference methods, like discrete-choice experiments, best-worse scaling, and prioritization exercises. We have extensive experience in patient engagement and collaborate closely with Duke clinicians and partners from industry, regulatory authorities, and nonprofit organizations to design preference research studies that promote patient-centric care, bringing the patient voice into healthcare decision-making.
Our research informs regulatory decision-making, device and medical product development, clinical trial design, payment and coverage policies, and shared decision-making between patients and their clinicians.
We are highly experienced experts in:
- designing and conducting regulatory benefit-risk evaluations across a broad range of therapeutic areas
- understanding and quantifying risk tolerance, time-equivalent value, willingness-to-pay, and how preferences relate to treatment adherence
- developing and validating decision-support tools (i.e. decision aids) that enable patients, caregivers and physicians to make informed healthcare decisions that align with patient preferences
Jennifer Tsapatsaris, Director of Operations
Jui-Chen Yang, Director of Analytics and Creative Solutions
Matthew Wallace, Econometric Analyst
Jessie Sutphin, Director of Research
Upcoming Events
International Academy of Health Preference Research
15th Annual Meeting
Banff, Alberta, Canada
September 29-October 1, 2024
Risk Tolerance or Perceived Choice Constraints: The Impact of Social Factors on Preferences | Tina Cheng |
Understanding Patient Preferences to Reduce Racial Disparities in Diabetic Retinopathy Screening | January Cornelius |
Implementation of a BWS Tool in a Clinical Setting: Benefits of Skills “Cross-Pollination” | Carl Mhina |
To Screen or not to Screen for Diabetic Retinopathy: Is it really a Dilemma for Patients? | Juan Marcos Gonzalez |
Guidance or Misdirection? Unpacking the Role of Feedback in Health Preference Assessments | Mesfin Genie |
Sample-level and Individual-level Risk-Tolerance Estimates from a DCE and a TT Exercise | Shelby Reed |
Inductive vs Deductive Approaches to Latent Class Analysis: More Than Just Sorting into Buckets | Matthew Wallace |
Depressed with Utility-Theoretic Preferences: Tests of Path-Independence in Health-Status Sequences | Reed Johnson |
How Much Do We Already Know? Fusion Analysis of Primary Patient-Preference Data for Benefit Transfer | Reed Johnson |
Society for Medical Decision Making (SMDM)
46th Annual Meeting
Boston
October 27-30, 2024
Short course lecturer: Introduction to Measuring Preferences in Health | Semra Ozdemir |
Panel discussant: The Power of Preferences: Shaping health decisions across diverse contexts | Semra Ozdemir |
Poster presenter: What matters most in abortion care: Formative qualitative research to develop a discrete-choice experiment | Alicja Mastylak |
Poster presenter: Development of a novel preference-based decision-support tool for adult patients with eosinophilic esophagitis | Alicja Mastylak |
Methodological Contributions
The PrefER team continues to develop, evaluate and apply new methods in preference research.
In 2019, the US Food and Drug Administration issued a warning that symptomatic relief from claudication using paclitaxel-coated devices might be associated with an increase in mortality over 5 years. We designed a discrete-choice experiment (DCE) to quantify tradeoffs that patients would accept between a decreased risk of clinically driven target-vessel revascularization (CDTVR) and increased mortality risk. Our work is a model for future collaborative efforts including patients, clinicians, researchers, regulatory partners, and industry to further define patient preferences and goals of care.
Wallace MJ, Weissler EH, Yang J-C, Brotzman L, Corriere MA, Secemsky EA, Sutphin J, Johnson FR, Gonzalez JM, Tarver ME, Saha A, Chen AL, Gebben DJ, Malone M, Farb A, Babalola O, Rorer EM, Zikmund-Fisher BJ, Reed SD. Using separate single-outcome risk presentations instead of integrated multioutcome formats improves comprehension in discrete choice experiments. Med Decis Making. 2024 [cited 2024 Jul 23]; Available from: https://pubmed.ncbi.nlm.nih.gov/38903012/ |
Evaluating poolability by considering subgroup means, as is usually done, can provide an incomplete assessment of differences in preferences across several groups or samples. Comparing means only can overlook the fact that subgroups can share the same set of preference types, even if distributed differently. We developed a novel approach to control for distributional differences in preferences across subgroups. In a study of family caregivers across five countries we found that our approach afforded us greater flexibility to accommodate respondents from multiple countries within the same model of preferences. This, in turn, helped us shrink standard errors of the preference estimates without increasing the study sample size. Gonzalez JM, Johnson FR, Finkelstein E. To pool or not to pool: Accounting for task non-attendance in subgroup analysis. J Choice Model. 2024;51(100487):100487. Available from: http://dx.doi.org/10.1016/j.jocm.2024.100487 |
Conventional estimates of maximum-acceptable risks (MARs) evaluate only one adverse-event risk at a time, but patients are often exposed to multiple treatment-related adverse-event risks. To account for this, we developed Simultaneous Maximum Acceptable Risk Thresholds (SMART) to represent combinations of maximum risk levels that would be jointly acceptable for specific treatment benefits. Fairchild AO, Reed SD, Gonzalez JM. Method for calculating the Simultaneous Maximum Acceptable Risk Threshold (SMART) from discrete-choice experiment benefit-risk studies. Med Decis Making. 2023;43(2):227–38. Available from: http://dx.doi.org/10.1177/0272989x221132266
We extended methods for SMARTs to produce SMART contours which account for uncertainty associated with acceptable tradeoffs between benefits and two adverse-event risks. In this paper, we apply this approach to three previously published patient-preference studies. Montano-Campos JF, Gonzalez JM, Rickert T, Fairchild AO, Levitan B, Reed SD. Use of patient preferences data regarding multiple risks to inform regulatory decisions. MDM Policy Pract. 2023;8(1):238146832211487. Available from: http://dx.doi.org/10.1177/23814683221148715 |
Medication non-adherence remains a significant challenge in healthcare, impacting treatment outcomes and the overall effectiveness of medical interventions. This article introduces a novel approach to understanding and predicting medication non-adherence by integrating patient preferences with patients’ beliefs, efficacy expectations, and perceived costs. Existing theoretical models often fall short in quantifying the impact of barrier removal on medication adherence and struggle to address cases where patients consciously choose not to follow prescribed medication regimens. In response to these limitations, this study presents an empirical framework that seeks to provide a quantifiable model for both individual and population-level prediction of non-adherence under different scenarios. Muiruri C, van den Broek-Altenburg E, Bosworth H, Cené C, Gonzalez J. A quantitative framework for medication non-adherence: Integrating patient treatment expectations and preferences. Patient Prefer Adherence [Internet]. 2023;17:3135–45. Available from: http://dx.doi.org/10.2147/ppa.s434640 |
Approaches that combine patient preferences and clinical evidence can facilitate effective patient-provider communication and more patient-centric healthcare decisions. However, diagnosing individual-level preferences is challenging. We proposed an approach to efficiently diagnose the preferences of patients for outcomes of treatment alternatives by leveraging prior information on patient preferences. Our approach allows the generation of adaptive choice questions to identify a patient's proximity to known preference phenotypes with as little as two questions. The diagnosis of preferences can help physicians discuss relevant aspects of the treatment options and proactively address patient concerns during the clinical encounter. Gonzalez Sepulveda JM, Johnson FR, Reed SD, Muiruri C, Hutyra CA, Mather RC III. Patient-preference diagnostics: Adapting stated-preference methods to inform effective shared decision making. Med Decis Making [Internet]. 2023;43(2):214–26. Available from: http://dx.doi.org/10.1177/0272989x221115058 |
Marshall DA, Veldwijk J, Janssen EM, Reed SD. Stated-preference survey design and testing in health applications. Patient 2024 [cited 2024 Jul 23]; Available from: https://pubmed.ncbi.nlm.nih.gov/38294720/ |
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Hung A, Yang J-C, Wallace M, Zwischenberger BA, Vemulapalli S, Mentz RJ, et al. Patient risk–benefit preferences for Transcatheter versus surgical mitral valve repair. J Am Heart Assoc 2024;13(6). Available from: http://dx.doi.org/10.1161/jaha.123.032807 |
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Finkelstein EA, Ozdemir S, Huynh VA, Chay J, Mühlbacher A, Tan HK. Navigating public policy responses to a pandemic: The balancing act between physical health, mental health, and household income. Value Health 2024; Available from: http://dx.doi.org/10.1016/j.jval.2024.04.019 |
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Ozdemir S, Quaife M, Mohamed AF, Norman R. An overview of data collection in health preference research. Patient 2024; Available from: http://dx.doi.org/10.1007/s40271-024-00695-6 |
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Bansal P, Kim E-J, Ozdemir S. Discrete choice experiments with eye-tracking: How far we have come and ways forward. J Choice Model 2024;51(100478):100478. Available from: http://dx.doi.org/10.1016/j.jocm.2024.100478 |
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Ozdemir S, Chaudhry I, Malhotra C, Teo I, Finkelstein EA, Singh R, et al. Goals of care among patients with advanced cancer and their family caregivers in the last years of life. JAMA Netw Open. 2024 [cited 2024 Jul 23];7(4):e245866. Available from: https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2817443 |
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Ramakrishnan C, Widjaja N, Malhotra C, Finkelstein E, Khan BA, Ozdemir S, et al. Unravelling complex choices: multi-stakeholder perceptions on dialysis withdrawal and end-of-life care in kidney disease. BMC Nephrol. 2024;25(1). Available from: http://dx.doi.org/10.1186/s12882-023-03434-5 |
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van Til JA, Pearce A, Ozdemir S, Hollin IL, Peay HL, Wu AW, et al. Role preferences in medical decision making: Relevance and implications for health preference research. Patient. 2024;17(1):3–12. Available from: http://dx.doi.org/10.1007/s40271-023-00649-4 |
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Ozdemir S, Ng S, Huynh VA, Mühlbacher A, Tan HK, Finkelstein EA. Trade-offs between vaccine effectiveness and vaccine safety: Personal versus policy decisions. Pharmacoeconom Open. 2023 [cited 2024 Jul 23];7(6):915–26. Available from: https://pubmed.ncbi.nlm.nih.gov/37819585/ |
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Gonzalez Sepulveda JM, Yang J-C, Reed SD, Lee T-H, Ng X, Stothers S, et al. Preferences for potential benefits and risks for gene therapy in the treatment of sickle cell disease. Blood Adv. 2023;7(23):7371–81. Available from: http://dx.doi.org/10.1182/bloodadvances.2023009680
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Gonzalez JM, Grover K, Leblanc TW, Reeve BB. Did a bot eat your homework? An assessment of the potential impact of bad actors in online administration of preference surveys. PLoS One. 2023;18(10):e0287766. Available from: http://dx.doi.org/10.1371/journal.pone.0287766
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Johnson FR, Gonzalez JM, Sheehan JJ, Reed SD. How much better is faster? Value adjustments for health-improvement sequences. Pharmacoeconomics. 2023;41(8):845–56. Available from: http://dx.doi.org/10.1007/s40273-023-01266-7 |
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Montano-Campos JF, Gonzalez JM, Rickert T, Fairchild AO, Levitan B, Reed SD. Use of patient preferences data regarding multiple risks to inform regulatory decisions. MDM Policy Pract. 2023;8(1):238146832211487. Available from: http://dx.doi.org/10.1177/23814683221148715
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Shammas RL, Hung A, Mullikin A, Sergesketter AR, Lee CN, Reed SD, et al. Patient preferences for postmastectomy breast reconstruction. JAMA Surg. 2023;158(12):1285. Available from: http://dx.doi.org/10.1001/jamasurg.2023.4432 |
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Rincon-Gonzalez L, Selig WKD, Hauber B, Reed SD, Tarver ME, Chaudhuri SE, et al. Leveraging patient preference information in medical device clinical trial design. Ther Innov Regul Sci. 2023 [cited 2024 Jul 23];57(1):152–9. Available from: https://pubmed.ncbi.nlm.nih.gov/36030334/ |
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Johnson FR. Comment on: Taking the shortcut: Simplifying heuristics in discrete choice experiments. Patient. 2023;16(4):289–92. Available from: http://dx.doi.org/10.1007/s40271-023-00629-8 |
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Johnson FR, Fairchild A, Whittington D, Srivastava AK, Gonzalez JM, Huang L. How does the public evaluate vaccines for low-incidence, severe-outcome diseases? A general-population choice experiment. Patient. 2023;16(2):139–51. Available from: http://dx.doi.org/10.1007/s40271-022-00602-x |
Training Opportunities
Attendees will learn how to apply a well-defined conceptual framework to the design, implementation, and critical assessment of stated-preference surveys. Case studies will illustrate strengths and limitations of various preference-elicitation methods. These case studies also will demonstrate application of such quantitative preference methods to inform patient-centered health care, health-technology assessment, and regulatory decision making. Participants will complete and evaluate a stated-choice survey during the workshop. An additional half-day session is offered to allow attendees to ask specific questions about their research ideas and projects.
Learn More: https://populationhealth.duke.edu/education/summer-institute-2024