selected publications

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Timmermans, Stefan; Caroline K. Tietbohl. 2018. “Fifty years of sociological leadership at Social Science and Medicine.” Soc Sci & Med 196:209-215.

In this review article, we examine some of the conceptual contributions of sociology of health and illness over the past fifty years. Specifically, we focus on research dealing with medicalization, the management of stigma, research on adherence and compliance, and patient-doctor interaction. We show how these themes that originated within sociology, diffused in other disciplines. Sociology in Social Science and Medicine started as an applied research tradition but morphed into a robust, stand-alone social science tradition.

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Timmermans, Stefan; Caroline K. Tietbohl; and Eleni Skaperdas. 2016. “Narrating Uncertainty: Variants of Uncertain Significance (VUS) in Clinical Exome Sequencing.” Biosocieties doi:10.1057/s41292-016-0020-5.

Exome sequencing is an innovative next-generation sequencing technology that examines the majority of disease-causing genes with a single test. Physicians and patients resort to exome sequencing to probe for a genetic cause of disease. The technology produces about 20,000 variants and many are of uncertain clinical relevance. Drawing from ethnographic field notes and audio recordings of over 1,500 patient cases discussed at genetic data board meetings over a three-year period, this article reports on how a collective of laboratory scientists and clinicians contend practically and conceptually with variants of uncertain significance (VUS). Rather than standardizing the inclusion criteria for a VUS, the collective contextualizes each VUS with its own evidentiary narrative. The VUS then becomes subject to revision based on evolving evidence, further testing, and updated interpretations. We argue that the epistemic uncertainty of VUS becomes productive; it indicates future causality and suggests that genetic causes can explain patients’ symptoms even if no known pathogenic variants could be located.

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Frosch, Dominick L; Suepattra G. May; Katharine A.S. Rendle; Caroline K. Tietbohl; and Glyn Elwyn. 2012. “Authoritarian Physicians And Patients’ Fear Of Being Labeled ‘Difficult’ Among Key Obstacles To Shared Decision Making.” Health Affairs 31(5):1030-8. 9.

Relatively little is known about why some patients are reluctant to engage in a collaborative discussion with physicians about their choices in health care. To explore this issue further, we conducted six focus-group sessions with forty-eight people in the San Francisco Bay Area. In the focus groups, we found that participants voiced a strong desire to engage in shared decision making about treatment options with their physicians. However, several obstacles inhibit those discussions. These include the fact that even relatively affluent and well-educated patients feel compelled to conform to socially sanctioned roles and defer to physicians during clinical consultations; that physicians can be authoritarian; and that the fear of being categorized as "difficult" prevents patients from participating more fully in their own health care. We argue that physicians may not be aware of a need to create a safe environment for open communication to facilitate shared decision making. Rigorous measures of patient engagement, and of the degree to which health care decisions truly reflect patient preferences, are needed to advance shared decision making in clinical practice.

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Frosch, Dominick L.; Suepattra G. May; Caroline K. Tietbohl; and Jose Pagan. 2011. “Living in the Land of No? Consumer Perceptions of Healthy Lifestyle Portrayals in Direct-to-Consumer Advertisements of Cholesterol Lowering Drugs.” Soc Sci & Med 73(7):995-1002.

Direct-to-consumer advertising (DTCA) of prescription drugs is the most common form of health communication Americans are exposed to. The effects of DTCA on prescription requests and utilization are well established, but little is known about the effects of advertisements on health behaviors. Many advertisements, especially those promoting drugs to prevent or treat cardiovascular disease, refer to lifestyle change as a way to improve health. However, no studies have examined how consumers interpret these frequently ambiguous messages. We used in-depth interviews with 45 participants, recruited in Los Angeles, USA between April 2007 and July 2008, to explore perceptions of 5 advertisements for drugs that prevent or treat cardiovascular disease (Lipitor(®), Vytorin(®), Zetia(®), Caduet(®), Plavix(®)). We found that participants interpreted advertising messages within their own life context and identified four trajectories for enacting behavior change versus taking prescription drugs: Negotiators, Avoiders, Embracers and Jumpstarters. Underlying these four typologies were beliefs about whether lifestyle change was something an individual could do or was willing to do. Our results also show how an advertisement narrative could potentially shift perceptions of causality by suggesting that high cholesterol is primarily hereditary, thereby obviating the need for lifestyle change. Some participants stated that they would prefer lifestyle change to a particular prescription drug, but felt that others would be more likely to embrace taking a prescription drug. This "Third Person Effect" may be masking participants' intentions by identifying a more socially desirable route to therapeutic change. These findings raise questions about how the typologies are distributed in the population and how advertising may shift consumers' beliefs over time, thereby contributing to new forms of medicalization. Effective regulation of DTCA may require expanding scrutiny beyond the accuracy of claims about benefits and risks, to also considering the broader narratives in which these claims are made.

Other publications

Peer-reviewed journal articles

Tietbohl, Caroline K.; Katharine A.S. Rendle; Meghan Halley; Suepattra G. May; Grace A. Lin; and Dominick L. Frosch. 2015. “Implementing patient decision support interventions in primary care: the role of relational coordination.” Med Decis Making 35(8):987-98. 4.

May, Suepattra G.; Peter Cheng; Caroline K. Tietbohl; Meghan Halley; Laurel Trujillo; Dominick L. Frosch; and Grace A. Lin. 2014. “Shared Medical Appointments to Screen for Geriatric Syndromes: Preliminary Data from a Quality Improvement Initiative”. Am Geriatr Soc 62:2415–2419. 5.

Elwyn, Glyn; Isabelle Scholl; Caroline K. Tietbohl; et al. 2013. “Many miles to go …A systematic review of the implementation of patient decision support interventions into routine clinical practice.” BMC Med Inform Decis 13(Suppl 2):S14. 6.

Rendle, Katharine; Suepattra G. May; Visith Uy; Caroline K. Tietbohl; Carol M. Mangione; and Dominick L. Frosch. 2013. “Persistent Barriers & Strategic Practices: Why the Everyday Matters in Diabetes Management.” Diabetes Educator 39(4):560-7. 7.

Lin, Grace .A.; Meghan Halley; Katharine A.S. Rendle; Caroline K. Tietbohl; Suepattra G. May; Laurel Trujillo; and Dominick L. Frosch. 2013. “An effort to spread decision aids in five California primary care practices yielded low distribution, highlighting hurdles.” Health Affairs 32(2):311-20. 8.

Uy, Visith; Suepattra G. May; Caroline K. Tietbohl; and Dominick L. Frosch. 2011. “Barriers and facilitators to routine distribution of patient decision support interventions: a preliminary study in community-based primary care settings.” Health Expectations doi: 10.1111/j.1369- 7625.2011.00760.x 10.

Book chapter

Frosch, Dominick; Caroline K. Tietbohl and Isabelle Scholl. 2016. “Overcoming Implementation Challenges to Advance Shared Decision-Making in Routine Practice” in Shared Decision Making in Health Care: Achieving Evidence-based Patient Choice. 3rd Edition, edited by Adrian Edwards and Glyn Elwyn. Oxford University Press.

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