Conceptual, Methodological, and Ethical Problems in Communicating Uncertainty in Clinical Evidence
ABSTRACT The communication of uncertainty in clinical evidence is an important endeavor that poses difficult conceptual, methodological, and ethical problems. Conceptual problems include logical paradoxes in the meaning of probability and "ambiguity"-second-order uncertainty arising from the lack of reliability, credibility, or adequacy of probability information. Methodological problems include questions about optimal methods for representing fundamental uncertainties and for communicating these uncertainties in clinical practice. Ethical problems include questions about whether communicating uncertainty enhances or diminishes patient autonomy and produces net benefits or harms. This article reviews the limited but growing literature on these problems and efforts to address them and identifies key areas of focus for future research. It is argued that the critical need moving forward is for greater conceptual clarity and consistent representational methods that make the meaning of various uncertainties understandable, and for clinical interventions to support patients in coping with uncertainty in decision making.
- SourceAvailable from: Barbara A Bernhardt
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- "In other clinical arenas, important choices patients make are frequently based on a shared decision-making model in which patients and clinicians discuss available facts and share personal preferences and values. A trusting relationship in which the clinician knows the patient as a person, and understands her values, experiences and informational needs is central to shared decision-making (Epstein and Gramling 2013; Han 2013). When there are uncertainties relating to potential outcomes, shared decision-making can promote patient autonomy through a patient-clinician partnership aimed at helping patients achieve clarity about their preferences in the face of complexity, inadequate evidence, and irreducible uncertainty. "
ABSTRACT: Because of the higher yield over traditional chromosomal analysis, chromosomal microarray analysis (CMA) is being used increasingly in prenatal diagnosis. Unfortunately, the clinical implication of many copy number variants found on prenatal CMA is uncertain, complicating genetic counseling. Recognizing that uncertain results will be encountered frequently as more of the genome is assayed prenatally, we set out to understand the experiences and needs of genetic counselors when counseling patients about uncertain prenatal microarray results, their comfort with various aspects of prenatal genetic counseling, and their interest in additional education and training about prenatal microarray testing. We first interviewed 10 genetic counselors about their experiences of providing pre- and post-test genetic counseling about prenatal CMA. Based on the findings from the counselor interviews, we developed items for a survey to assess the prevalence of genetic counselors' attitudes towards, experience and comfort with, and educational needs regarding prenatal CMA. Based on surveys completed by 193 prenatal genetic counselors, we found that when there is an uncertain CMA result, only 59 % would be comfortable providing genetic counseling and only 43 % would be comfortable helping a patient make a decision about pregnancy termination. Being less comfortable was associated with seeing fewer patients having prenatal CMA testing. Respondents expressed a high degree of interest in additional education about prenatal CMA and counseling about uncertain results. Further genetic counselor education and training aimed at improving counselors' personal comfort with uncertain results and communicating about them with patients is needed.Journal of Genetic Counseling 02/2014; 23(6). DOI:10.1007/s10897-014-9702-y · 2.24 Impact Factor
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- "All of these reactions raise questions about logic and timing in communicating uncertainty. Of course, only the aggregation of numerous studies across different contexts, time intervals, and forms of uncertainty will yield generalizable knowledge to guide effective communication practice [7,8,33,34]. "
ABSTRACT: In 2009, the U.S. Preventive Services Task Force released new mammography screening guidelines that sparked a torrent of criticism. The subsequent conflict was significant and pitted the Task Force against other health organizations, advocacy groups, the media, and the public at large. We argue that this controversy was driven by the systematic removal of uncertainty from science communication. To increase comprehension and adherence, health information communicators remove caveats, limitations, and hedging so science appears simple and more certain. This streamlining process is, in many instances, initiated by researchers as they engage in dissemination of their findings, and it is facilitated by public relations professionals, journalists, public health practitioners, and others whose tasks involve using the results from research for specific purposes. Uncertainty is removed from public communication because many communicators believe that it is difficult for people to process and/or that it is something the audience wants to avoid. Uncertainty management theory posits that people can find meaning and value in uncertainty. We define key terms relevant to uncertainty management, describe research on the processing of uncertainty, identify directions for future research, and offer recommendations for scientists, practitioners, and media professionals confronted with uncertain findings. Science is routinely simplified as it is prepared for public consumption. In line with the model of information overload, this practice may increase short-term adherence to recommendations at the expense of long-term message consistency and trust in science.BMC Medical Informatics and Decision Making 12/2013; 13 Suppl 3(Suppl 3):S4. DOI:10.1186/1472-6947-13-S3-S4 · 1.83 Impact Factor
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- "MAGIC scripts were designed to model the key SDM content elements of choice talk, option talk, and decision talk (Fig. 1) . In similar fashion, we created Risk Talk scripts to address key content and process elements of risk communication; examples are in Fig. 2. The scripts addressed essential functions of effective risk communication identified in the literature, including improving conceptual understanding of risk and uncertainty  , increasing the evaluability of risk information , and reducing cognitive biases in the interpretation of risk information . Improving conceptual understanding involves strategies to help patients understand the fundamental nature of risk estimates—their origin and derivation as well as their inherent uncertainty—and includes educating patients about the time frame and reference class of risk estimates. "
ABSTRACT: To develop, pilot, and evaluate a curriculum for teaching clinical risk communication skills to medical students. A new experience-based curriculum, "Risk Talk," was developed and piloted over a 1-year period among students at Tufts University School of Medicine. An experimental study of 2nd-year students exposed vs. unexposed to the curriculum was conducted to evaluate the curriculum's efficacy. Primary outcome measures were students' objective (observed) and subjective (self-reported) risk communication competence; the latter was assessed using an Observed Structured Clinical Examination (OSCE) employing new measures. Twenty-eight 2nd-year students completed the curriculum, and exhibited significantly greater (p<.001) objective and subjective risk communication competence than a convenience sample of 24 unexposed students. New observational measures of objective competence in risk communication showed promising evidence of reliability and validity. The curriculum was resource-intensive. The new experience-based clinical risk communication curriculum was efficacious, although resource-intensive. More work is needed to develop the feasibility of curriculum delivery, and to improve the measurement of competence in clinical risk communication. Risk communication is an important advanced communication skill, and the Risk Talk curriculum provides a model educational intervention and new assessment tools to guide future efforts to teach and evaluate this skill.Patient Education and Counseling 09/2013; 94(1). DOI:10.1016/j.pec.2013.09.009 · 2.20 Impact Factor