Medical Care Research and Review

Zikmund-Fisher, Brian J.

doi: 10.1177/1077558712458541pmid: 22955699

While patients often receive risk information, exactly what constitutes being “informed” about health risks is often unclear. Patients have specific needs, such as avoiding being surprised by a possible outcome and making complex risk trade-off decisions. Yet all risk information is not equally informative for those needs. In this article, I present a taxonomy of seven risk concepts that vary in their inherent precision and evaluability. Congruent with the “less is more” concept, I argue that risk communications should use formats that are tailored to message recipients’ specific informational needs. Simpler formats can be used when patients only need to order risks, while more complex numerical probability statements will be necessary when patients need to assess differences in risk magnitude and put those differences into meaningful context. Selecting need-congruent formats when designing communications about risks to patients is a novel approach that may better support patients’ health care decision making.

Smith, Quentin W.; Street, Richard L.; Volk, Robert J.; Fordis, Michael

doi: 10.1177/1077558712468491pmid: 23223330

The near ubiquitous access to information is transforming the roles and relationships among clinical professionals, patients, and their care givers in nearly all aspects of healthcare. Informed patients engage their physicians in conversations about their conditions, options and the tradeoffs among diagnostic and therapeutic benefits and harms. The processes of care today increasingly and explicitly integrate exploration of patient values and preferences as patients and clinicians jointly engage in reaching decisions about care. The informed patient of today who can understand and use scientific information can participate as an equal partner with her clinician. Others with beliefs or educational, cultural, or literacy backgrounds that pose challenges to comprehending and applying evidence may face disenfranchisement. These barriers are significant enough, even in the face of certainty of evidence, that clinicians and investigators have given much thought to how best to engage all patients in decision making. However, barriers remain, as most decision making must occur in settings where uncertainty, if not considerable uncertainty, accompanies any statement of what we know. In September 2011, health care and health communication experts came together in Rockville, Maryland under the auspices of the Agency for Healthcare Research and Quality (AHRQ) John M. Eisenberg Center for Clinical Decisions and Communications Science Annual Meeting to explore the challenges of differing levels of evidence in promoting shared decisions and to propose strategies for going forward in addressing these challenges. Eight scholarly papers emerged, and with this introductory article, comprise this special issue of Medical Care Research and Review.

Braddock, Clarence H.

doi: 10.1177/1077558712460280pmid: 23124617

Shared decision making (SDM) is the process of providing the patient with critical information that can support his or her informed participation in decision making. Shared decision making has become accepted as an important component of quality health care. Influenced by its foundations in law and ethics and by empirical work on its value as a tool to reduce variability in care, a perception has developed that SDM is relevant primarily to clinical situations with high-quality clinical evidence. This raises the question of the role of SDM in situations when clinical evidence is lacking or of low quality. This article posits that SDM is equally relevant and important to low-evidence situations in four ways—SDM fosters shared acceptance of uncertainty, closes the gap in knowledge between patient and physician, promotes patient empowerment, and enhances trust through transparent communication.

Epstein, Ronald M.; Gramling, Robert E.

doi: 10.1177/1077558712459216pmid: 23035055

Patient involvement in decisions is central to patient-centered care. Yet many important decisions must be made in complex, ambiguous clinical situations in which all possible options cannot be known, evidence is inadequate to inform patients’ preferences fully, and/or patients are unclear about their desired level of involvement. In these situations, preferences are shaped by affect, framing, and “collaborative cognition” among clinicians, patients, and their families; thus, decisions are often relational, dynamic, iterative, provisional, and/or conditional. Clinicians can help patients achieve greater autonomy by engaging both intuitive and deliberative decision-making processes (“whole mind”) and involving others in exploring, clarifying, and co-constructing patients’ preferences (“shared mind”). Clinical and interpersonal relationships can promote effective decision making through developing a shared attentional focus, tailoring information, and identifying conditions under which provisional preferences might change. Information technology and health systems offer untapped potential to deepen the relationships and conversations within which decisions are made.

Llewellyn-Thomas, Hilary A.; Crump, R. Trafford

doi: 10.1177/1077558712461182pmid: 23124615

Providing a patient with decision support involves helping that person to choose among two or more elective health care options. “Values Clarification” and “Preference Elicitation” are integral to the full decision-support process. During values clarification, the patient and clinician gain insight into the importance that the patient ascribes to the options’ positive and negative characteristics. During preference elicitation, the patient identifies which options are, overall, personally most favored (and, by corollary, which are least favored). This article identifies the roles that values clarification/preference elicitation (VC/PE) play in the full process of patients’ decision support, outlines various approaches to fostering VC/PE, and poses some fundamental and applied research questions about VC/PE. It also argues that, in order to proceed to answer the posed research questions, investigators in the field of patients’ decision support require a systematic set of criteria for comparing the performance of different VC/PE techniques.

Fraenkel, Liana

doi: 10.1177/1077558712461283pmid: 23132890

Current models of care emphasize the importance of including patients’ values in the decision-making process. This is particularly important for decisions for which there are few data supporting a clear strategy or treatment choice. Constructing preferences for complex decisions requires that patients be able to consider multiple trade-offs between specific risks and benefits. Several marketing research techniques have been recently applied to heath care settings to facilitate this process. Most can be programmed to generate patients’ preferences or priorities, which can then be used to improve patient–physician communication. In this article, we will describe some of the currently available approaches that have been successfully used in the health care setting. We provide case examples to illustrate the potential value of adopting each of these approaches in clinical practice.

McCullough, Laurence B.

doi: 10.1177/1077558712461952pmid: 23124614

The professional medical ethics model of decision making may be applied to decisions clinicians and patients make under the conditions of clinical uncertainty that exist when evidence is low or very low. This model uses the ethical concepts of medicine as a profession, the professional virtues of integrity and candor and the patient’s virtue of prudence, the moral management of medical uncertainty, and trial of intervention. These features combine to justifiably constrain clinicians’ and patients’ autonomy with the goal of preventing nondeliberative decisions of patients and clinicians. To prevent biased recommendations by the clinician that promote such nondeliberative decisions, medically reasonable alternatives supported by low or very low evidence should be offered but not recommended. The professional medical ethics model of decision making aims to improve the quality of decisions by reducing the unacceptable variation that can result from nondeliberative decision making by patients and clinicians when evidence is low or very low.

Han, Paul K. J.

doi: 10.1177/1077558712459361pmid: 23132891

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.

Politi, Mary C.; Lewis, Carmen L.; Frosch, Dominick L.

doi: 10.1177/1077558712458456pmid: 23124616

There is growing interest in shared decision making (SDM) in the United States and globally, at both the clinical and policy levels. SDM is typically employed during “preference-sensitive” decisions, where there is equipoise between treatment options with equal or similar outcomes from a medical standpoint. In these situations, patients’ preferences for the possible risks, benefits, and trade-offs between options are central to the decision. However, SDM also may be appropriate in clinical situations besides those in which data demonstrate equipoise. In situations of low evidence, where evidence is conflicting, unavailable or not applicable to an individual patient, supporting SDM can present unique challenges, above and beyond the challenges faced during more standard preference-sensitive decisions. This article discusses challenges in supporting shared decisions when clinical evidence is low, describes strategies that can facilitate SDM despite low evidence, and suggests avenues for future research to explore further these proposed strategies.