Do personal stories make patient decision aids more effective? A critical review of theory and evidence

Background Patient decision aids support people to make informed decisions between healthcare options. Personal stories provide illustrative examples of others’ experiences and are seen as a useful way to communicate information about health and illness. Evidence indicates that providing information within personal stories affects the judgments and values people have, and the choices they make, differentially from facts presented in non-narrative prose. It is unclear if including narrative communications within patient decision aids enhances their effectiveness to support people to make informed decisions. Methods A survey of primary empirical research employing a systematic review method investigated the effect of patient decision aids with or without a personal story on people’s healthcare judgements and decisions. Searches were carried out between 2005-2012 of electronic databases (Medline, PsycINFO), and reference lists of identified articles, review articles, and key authors. A narrative analysis described and synthesised findings. Results Of 734 citations identified, 11 were included describing 13 studies. All studies found participants’ judgments and/or decisions differed depending on whether or not their decision aid included a patient story. Knowledge was equally facilitated when the decision aids with and without stories had similar information content. Story-enhanced aids may help people recall information over time and/or their motivation to engage with health information. Personal stories affected both “system 1” (e.g., less counterfactual reasoning, more emotional reactions and perceptions) and “system 2” (e.g., more perceived deliberative decision making, more stable evaluations over time) decision-making strategies. Findings exploring associations with narrative communications, decision quality measures, and different levels of literacy and numeracy were mixed. The pattern of findings was similar for both experimental and real-world studies. Conclusions There is insufficient evidence that adding personal stories to decision aids increases their effectiveness to support people’s informed decision making. More rigorous research is required to elicit evidence about the type of personal story that a) encourages people to make more reasoned decisions, b) discourages people from making choices based on another’s values, and c) motivates people equally to engage with healthcare resources

Decision aids for randomised controlled trials : a qualitative exploration of stakeholders' views

Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions. Funding: This work was supported by personal fellowship award (to KG) from the Chief Scientist Office of the Scottish Governments Health and Social Care Directorates, grant number [PDF/09/01]. The Health Services Research Unit is supported by a core grant from the Chief Scientist Office of the Scottish Government Health and Social Care Directorates.Peer reviewedPublisher PD

Shared decision making between registrars and patients : web based decision aids

BACKGROUND: Current evidence suggests that doctors do not always involve patients in decisions; this may be due to lack of training. This study explores the feasibility of using web based decision aids (DAs) to improve the skills of general practice registrars in sharing decisions with patients. METHOD: Interviews were conducted with registrars to explore their attitudes to shared decision making. Following an educational intervention, registrars were asked to adopt shared decision making within their consultations using DAs as appropriate. The registrars were interviewed again to explore their experiences and any barriers to the process. RESULTS: Registrars had positive views about the shared decision making process but required more training. They had mixed opinions about the use of DAs and identified several barriers to their use. They felt that they had learned from the project and process without necessarily wanting to pursue the use of DAs as interactive tools, preferring to use them as educational resources

The 2016 Academic Emergency Medicine Consensus Conference, Shared Decision Making in the Emergency Department: Development of a Policy-relevant Patient-centered Research Agenda Diagnostic Testing Breakout Session Report.

Diagnostic testing is an integral component of patient evaluation in the emergency department (ED). Emergency clinicians frequently use diagnostic testing to more confidently exclude worst-case diagnoses rather than to determine the most likely etiology for a presenting complaint. Increased utilization of diagnostic testing has not been associated with reductions in disease-related mortality but has led to increased overall healthcare costs and other unintended consequences (e.g., incidental findings requiring further workup, unnecessary exposure to ionizing radiation or potentially nephrotoxic contrast). Shared decision making (SDM) presents an opportunity for clinicians to discuss the benefits and harms associated with diagnostic testing with patients to more closely tailor testing to patient risk. This article introduces the challenges and opportunities associated with incorporating SDM into emergency care by summarizing the conclusions of the diagnostic testing group at the 2016 Academic Emergency Medicine Consensus Conference on SDM. Three primary domains emerged: 1) characteristics of a condition or test appropriate for SDM, 2) critical elements of and potential barriers to SDM discussions on diagnostic testing, and 3) financial aspects of SDM applied to diagnostic testing. The most critical research questions to improve engagement of patients in their acute care diagnostic decisions were determined by consensus

Questioning the Quantitative Imperative: Decision Aids, Prevention, and the Ethics of Disclosure

Patients should not always receive hard data about the risks and benefits of a medical intervention. That information should always be available to patients who expressly ask for it, but it should be part of standard disclosure only sometimes, and only for some patients. And even then, we need to think about how to offer it

Determining information for inclusion in a decision-support intervention for clinical trial participation : A modified Delphi approach

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Shared decision-making about cardiovascular disease medication in older people: A qualitative study of patient experiences in general practice

Objectives To explore older people's perspectives and experiences with shared decision-making (SDM) about medication for cardiovascular disease (CVD) prevention. Design, setting and participants Semi-structured interviews with 30 general practice patients aged 75 years and older in New South Wales, Australia, who had elevated CVD risk factors (blood pressure, cholesterol) or had received CVD-related lifestyle advice. Data were analysed by multiple researchers using Framework analysis. Results Twenty eight participants out of 30 were on CVD prevention medication, half with established CVD. We outlined patient experiences using the four steps of the SDM process, identifying key barriers and challenges: Step 1. Choice awareness: taking medication for CVD prevention was generally not recognised as a decision requiring patient input; Step 2. Discuss benefits/harms options: CVD prevention poorly understood with emphasis on benefits; Step 3. Explore preferences: goals, values and preferences (eg, length of life vs quality of life, reducing disease burden vs risk reduction) varied widely but generally not discussed with the general practitioner; Step 4. Making the decision: overall preference for directive approach, but some patients wanted more active involvement. Themes were similar across primary and secondary CVD prevention, different levels of self-reported health and people on and off medication. Conclusions Results demonstrate how older participants vary widely in their health goals and preferences for treatment outcomes, suggesting that CVD prevention decisions are preference sensitive. Combined with the fact that the vast majority of participants were taking medications, and few understood the aims and potential benefits and harms of CVD prevention, it seems that older patients are not always making an informed decision. Our findings highlight potentially modifiable barriers to greater participation of older people in SDM about CVD prevention medication and prevention in general