Glyn Elwyn

Dartmouth College · Dartmouth Institute for Health Policy and Clinical Practice

Background Metoidioplasty and phalloplasty gender-affirming surgery (MaPGAS) is increasingly performed and requires patients to make complex decisions that may lead to decisional uncertainty. This study aimed to evaluate decisional conflict in individuals considering MaPGAS. Methods We administered a cross-sectional survey to adult participants as...

Objectives Patients’ preferences, values and contexts are important elements of the shared decision-making (SDM) process. We captured those elements into the concept of ‘personal perspective elicitation’ (PPE), which reflects the need to elicit patients’ preferences, values and contexts in patient–clinician conversations. We defined PPE as: ‘the di...

Background Patients often desire involvement in anesthesia decisions, yet clinicians rarely explain anesthesia options or elicit preferences. We developed My Anesthesia Choice-Hip Fracture, a conversation aid about anesthesia options for hip fracture surgery and tested its preliminary efficacy and acceptability. Methods We developed a 1-page, tabu...

Purpose: Good communication and use of plain language in health care encounters improve outcomes, including emotional health, symptom resolution, and functional status. Yet there is limited research on how to measure and report spoken plain language, which is the use of familiar, clear language. The authors aimed to describe key, measurable elemen...

UNSTRUCTURED Introduction: Human assessment of clinical encounter recordings using observer-based measures of shared decision-making, such as Observer OPTION-5 (OO5), is expensive. In this study, we aimed to assess the potential of using large language models (LLMs) to automate the rating of the OO5 item focused on offering options (item 1). Method...

Background Patients with heart failure (HF) and colorectal cancer (CRC) are prone to comorbidity, a high rate of readmission, and complex healthcare needs. Self-care for people with HF and CRC after hospitalisation can be challenging, and patients may leave the hospital unprepared to self-manage their disease at home. eHealth solutions may be a ben...

Despite the potential of digital mental health interventions to aid recovery for people with serious mental illness, access to these digital tools remains a key barrier. In this column, the authors discuss three key assumptions that shape the integration of digital mental health tools into community health settings: clinical context, digital litera...

261 Background: Patients' perceived care experience is an important aspect of care quality, particularly during treatment for serious illnesses like cancer. Yet, the effect of specialty palliative care involvement on the care experience of individuals with cancer is underexplored. There is a need for such patient reported quality measures, particul...

Background Health care organizations considering adopting a conversation aid (CA), a type of patient decision aid innovation, need information about the costs of implementation. Objectives The aims of this study were to: (1) calculate the costs of introducing a CA in a study of supported implementation in 5 gynecologic settings that manage individ...

Background Shared decision making (SDM) in breast cancer care improves outcomes, but it is not routinely implemented. Results from the What Matters Most trial demonstrated that early-stage breast cancer surgery conversation aids, when used by surgeons after brief training, improved SDM and patient-reported outcomes. Trial surgeons and patients both...

Background Decision aids help patients consider the benefits and drawbacks of care options but rarely include cost information. We assessed the impact of a conversation‐based decision aid containing information about low‐risk prostate cancer management options and their relative costs. Methods We conducted a stepped‐wedge cluster randomised trial...

Background Gender-affirming surgical procedures, such as metoidioplasty and phalloplasty for those assigned female at birth, are complex and multistaged and involve risks. Individuals considering these procedures experience greater uncertainty or decisional conflict, compounded by difficulty finding trustworthy information. Aim (1) To explore the...

Background: Skillful communication with attention to patient and care partner priorities can help people with serious illnesses. Few patient-facing agenda-setting tools exist to facilitate such communication. Objective: To develop a tool to facilitate prioritization of patient and care partner concerns during serious illness visits. Patient or...

Background Clinical and real-world effectiveness data for the COVID-19 vaccines have shown that they are the best defense in preventing severe illness and death throughout the pandemic. However, in the US, some groups remain more hesitant than others about receiving COVID-19 vaccines. One important group is long-term care workers (LTCWs), especiall...

Background: There is little evidence that share decision-making (SDM) is being successfully implemented, with a significant gap between theory and clinical practice. In this article we look at SDM explicitly acknowledging its social and cultural situatedness and examine it as a set of practices (e.g. actions, such as communicating, referring, or p...

Direct and indirect costs of care influence patients’ health choices and the ability to implement those choices. Despite the significant impact of care costs on patients’ health and daily lives, patient decision aid (PtDA) and shared decision-making (SDM) guidelines almost never mention a discussion of costs of treatment options as part of minimum...

There are limits to SDM, and the goal of this article is to be clear about the type of situations where SDM faces limits and where other strategies will need to be considered. Limits on SDM will occur when: - Wider interests override individual wishes - Evidence of benefit is insufficient or absent - Lowered decisional capacity is present - Profou...

Background Patient-reported outcomes—symptoms, treatment side effects, and health-related quality of life—are important to consider in chronic illness care. The increasing availability of health IT to collect patient-reported outcomes and integrate results within the electronic health record provides an unprecedented opportunity to support patients...

Background: Clinicians and their employers, concerned with privacy and liability, are often hesitant to support the recording of clinical encounters. However, many people wish to record encounters with healthcare professionals. It is therefore important to understand how existing law applies to situations where an individual requests to record a cl...

Objectives We evaluated the willingness of Family Medicine residents to engage in SDM, before and after an educational intervention. Methods We delivered a lecture and a workshop for residents on implementing SDM in preventive health care. Before the lecture (T1), participants completed a measure of their willingness to engage in SDM. Six months l...

Lay Summary Health confidence—an individual’s belief in their ability and agency to affect disease outcomes—has bidirectional temporal correlations with inflammatory bowel disease activity. Low health confidence is associated with higher risks for future disease activity, and inflammatory bowel disease flares erode confidence.

Objectives Proponents of shared decision-making (SDM) advocate the elicitation of the patient’s perspective. This scoping review explores if, and to what extent, the personal perspectives of patients are elicited during a clinical encounter, as part of a SDM process. We define personal perspective elicitation (PPE) as: the disclosure (either elicit...

Shared decision making (SDM) is defined as an approach in which clinicians and patients share the best available evidence when faced with the task of making decisions, and in which patients are supported to consider options to achieve informed preferences [1]. Over the past decade, SDM has been increasingly recognized as a component of value-based...

Background The implementation of shared decision-making and patient decision aids (PDAs) is impeded by clinicians’ attitudes. Objective To develop a measure of clinician attitude towards PDAs. Methods To develop the ADOPT measure, we used four stages, culminating in measure responses by medically qualified clinicians, 25 from each of the followin...

BACKGROUND Improving confidence in and uptake of the COVID-19 vaccines and boosters among long-term care workers (LTCWs) is a crucial public health goal, given their role in the care of the elderly and people at risk. While difficult to reach with workplace communication interventions, most LTCWs regularly use social media and smartphones. Various...

Background: Improving confidence in and uptake of the COVID-19 vaccines and boosters among long-term care workers (LTCWs) is a crucial public health goal, given their role in the care of the elderly and people at risk. While difficult to reach with workplace communication interventions, most LTCWs regularly use social media and smartphones. Variou...

Objective To conduct a scoping review of literature on the duration of patients’ opening statements in clinical encounters, with or without an interruption. Methods We conducted a scoping review to identify articles based on pre-specified inclusion and exclusion criteria. One reviewer extracted study details and outcomes related to the length of p...

Objectives: To examine the experiences among Dutch and American clinicians on the impact of using encounter patient decision aids (ePDAs) on their clinical practice, and subsequently to formulate recommendations for sustained ePDA use in clinical practice. Design: Qualitative study using semi-structured interviews with clinicians who used 11 diffe...

Objective To assess the psychometric properties of the consideRATE questions, a measure of serious illness experience. Methods We recruited people at least 50 years old via paid panels online, with US-Census-based quotas. We randomized participants to a patient experience story at two time points. They completed a series of measures, including the...

There is increasing interest in asking patients questions before their visits to elicit goals and concerns, which is part of the move to support the concept of coproducing care. The phrasing and delivery of such questions differs across settings and is likely to influence responses. This report describes a study that (i) used a three-level model to...

The value-based healthcare (VBHC) concept was first proposed as a solution to many of the ills of healthcare. Since then, we have seen the term “value” defined, used, confused, and interpreted in multiple ways. While we may disagree that competition based on value will solve healthcare’s complex challenges, value is a concept integral to the future...

Shared decision-making is recommended for decisions with multiple reasonable options, yet clinicians often subtly or explicitly guide choices. Using purposive sampling, we performed a secondary analysis of 142 audio-recorded encounters between 13 surgeons and women eligible for breast-conserving surgery with radiation or mastectomy. We trained 9 su...

Background Co-production of health is defined as ‘the interdependent work of users and professionals who are creating, designing, producing, delivering, assessing, and evaluating the relationships and actions that contribute to the health of individuals and populations’. It can assume many forms and include multiple stakeholders in pursuit of conti...

Background: Among musculoskeletal disorders, lumbar degenerative disease (LDD) is the leading cause of total disability-adjusted life years globally. Clinical guidelines for LDD describe multiple treatment options in which shared decision making becomes appropriate. Objectives: To explore the relationships among measures of decision antecedents,...

Background: The interest in shared decision making (SDM) and the use of patient decision aids has increased significantly. Research indicates that this approach has benefits and yet, implementation remains a challenge. To illustrate this development, we focus on vaccine hesitancy which has become a serious public health challenge during the COVID-...

Objective Our aim was to use critical discourse analysis (CDA) to examine the most widely cited definitions of shared decision making so that we can evaluate how language is used to position participants. Based on our conceptual understanding, we presumed that shared decision making involves acts of communication where processes are collaborative....

Objectives : Develop and pilot implantable cardioverter-defibrillator (ICD) decision aids (DAs) for patients considering primary prevention ICDs. Background : Using DAs for preference-sensitive decisions is an evidence-based way to improve patient-centered decisions. Reimbursement mandates have increased the need for DAs in ICD care, although none...

Background Rates of recommending percutaneous coronary intervention (PCI) and coronary artery bypass grafting (CABG) vary across clinicians. Whether clinicians agree on preferred treatment options for multivessel coronary artery disease patients has not been well studied. Methods and results We distributed a survey to 104 clinicians from the North...

Shared decision making can help patients feel supported and empowered when deciding between healthcare options. Decision regret can be a meaningful measure of the quality of that encounter. However, in a patient-engaged research study examining shared decision making for breast cancer surgery, decision regret was a difficult construct to assess, an...

There are numerous opportunities for shared decision-making (SDM) in cystic fibrosis (CF) care, yet little is known about patients’ SDM experiences. This study evaluated SDM across 159 CF care programs (4024 participants) in the United States. Shared decision-making was assessed using the patient-reported collaboRATE measure, which was included in...

Objectives The objective of this study is to build and evaluate a natural language processing approach to identify medication mentions in primary care visit conversations between patients and physicians. Materials and Methods Eight clinicians contributed to a data set of 85 clinic visit transcripts, and 10 transcripts were randomly selected from t...

Background Few studies have examined the best way to convey the probability of serious events occurring in the future (i.e., risk of stroke or death) to persons with low numeracy or graph literacy proficiency. To address this gap, we developed and user-tested a bar graph and compared it to icon arrays to assess its impact on understanding and prefe...

Objective We assessed the impact of a workshop on first-year medicine residents (PGY1) shared decision-making (SDM) communication skill, risk-benefit education, and attitude. Methods A SDM skills-focused workshop was integrated into an academic medical center PGY1 ambulatory rotation in 2016-2017. Pre/post recordings of virtual Objective Structure...

Background Costs of care are important to patients making cancer treatment decisions, but clinicians often do not feel prepared to discuss treatment costs. We aim to (1) assess the impact of a conversation-based decision aid (Option Grid) containing cost information about slow-growing prostate cancer management options, combined with urologic surge...

Objectives: There is a paucity of evidence on how to facilitate shared decision-making under real-world conditions and, in particular, whether interventions should target patients, health care providers, or both groups. Our objectives were to assess the comparative effectiveness, feasibility, and acceptability of patient- and provider-targeted inte...

Background The effectiveness of patient decision aids (PtDAs) and other shared decision-making (SDM) interventions for socially disadvantaged populations has not been well studied. Purpose To assess whether PtDAs and other SDM interventions improve outcomes or decrease health inequalities among socially disadvantaged populations and determine the...

Background: Transgender and gender diverse (TGD) persons considering gender affirming therapy have to make many complex medical decisions, potentially without understanding the associated harms or benefits of hormonal and surgical interventions. Further, clinicians are often unaware of how best to communicate information to persons seeking gender...

Background Patient decision aids (PDAs) should provide evidence‐based information so patients can make informed decisions. Yet, PDA developers do not have an agreed‐upon process to select, synthesize and present evidence in PDAs. Objective To reach the consensus on an evidence summarization process for PDAs. Design A two‐round modified Delphi sur...

Background Conversation aids can facilitate shared decision-making and improve patient-centered outcomes. However, few examples exist of sustained use of conversation aids in routine care due to numerous barriers at clinical and organizational levels. We explored factors that will promote the sustained use of two early-stage breast cancer conversat...

Background: Some researchers argue that the successful implementation of patient decision aids (PDAs) into clinical workflows depends on their integration into electronic health records (EHRs). Anecdotally, we know that EHR integration is a complex and time-consuming task; yet, the process has not been examined in detail. As part of an implementat...

Objective To (1) characterise (A) the lived experiences and (B) information needs of patients with rectal cancer; and (2) compare to the perceived lived experiences and information needs of colorectal surgeons. Design We conducted 1-hour semistructured qualitative interviews, dual independent transcript coding and thematic analysis. Setting/parti...

The objective of this study was to assess the psychometric properties of IntegRATE—a 4-item patient-reported measure of integration in health care delivery—under controlled conditions. Adults who reported having received health care in the previous year were exposed to a fictional health care scenario featuring good, mixed, or poor integration on 1...

Objectives: The objective of this study is to build and evaluate a natural language processing approach to identify medication mentions in primary care visit conversations between patients and physicians. Materials and Methods: Eight clinicians contributed to a dataset of 85 clinic visit transcripts, and ten transcripts were randomly selected from...

Background Inguinal hernia repair, gallbladder removal, and knee- and hip replacements are the most commonly performed surgical procedures, but all are subject to practice variation and variable patient-reported outcomes. Shared decision-making (SDM) has the potential to reduce surgery rates and increase patient satisfaction. This study aims to eva...

Objective Is the level of shared decision-making (SDM) higher after introduction of a SDM package (including encounter decision aids on treatment options for heavy menstrual bleeding and training for clinicians) than before? Methods This before-after study, performed in OB-GYN practice, compared consultations before and after introduction of a SDM...

Objectives To develop ‘incorpoRATE’, a brief and broadly applicable measure of physicians’ willingness to incorporate shared decision making (SDM) into practice. Methods incorpoRATE was developed across three phases: 1) A review of relevant literature to inform candidate domain and item development, 2) Cognitive interviews with physicians to itera...

Background: There is currently a paucity of data on urethral-related outcomes in metoidioplasty and phalloplasty gender affirming surgery (MaPGAS) with urethral lengthening (UL)and vaginectomy. Methods: A systematic review was performed utilizing MEDLINE, Web of Science, Cochrane Library, Europe PMC, OSF Preprints, and EMBASE. Methodologic quali...

Background Conversation aids can facilitate shared decision making and improve patient-centered outcomes. However, few examples exist of sustained use of conversation aids in routine care due to numerous barriers at clinical and organizational levels. We explored factors that will promote the sustained use of two early-stage breast cancer conversat...

Objectives Graphic display formats are often used to enhance health information. Yet limited attention has been paid to graph literacy in people of lower education and lower socioeconomic status (SES). This study aimed to: 1) examine the relationship between graph literacy, numeracy, health literacy and sociodemographic characteristics in a Medicai...

Background Women of lower socioeconomic status (SES) with early‐stage breast cancer are more likely to report poorer physician‐patient communication, lower satisfaction with surgery, lower involvement in decision making, and higher decision regret compared to women of higher SES. The objective of this study was to understand how to support women ac...

BACKGROUND Providing digital recordings of clinic visits to patients has emerged as a new strategy to promote patient and family engagement in care. With advances in natural language processing, an opportunity exists to maximize the value of visit recordings for patients by automatically tagging key visit information (e.g., medications, tests and i...

Background Providing digital recordings of clinic visits to patients has emerged as a strategy to promote patient and family engagement in care. With advances in natural language processing, an opportunity exists to maximize the value of visit recordings for patients by automatically tagging key visit information (eg, medications, tests, and imagin...

Objectives To update a previous systematic review to determine if patient decision aid (PDA) interventions generate savings in healthcare settings, and if so, from which perspective (ie, patient, organisation providing care, society). Design Systematic review. Data sources MEDLINE, CINAHL, PsycINFO, Web of Science, Cochrane Library, Embase, Campb...

Purpose: We examined self-reported financial toxicity and out-of-pocket expenses among adult women with breast cancer. Methods: Patients spoke English, Spanish, or Mandarin Chinese, were aged 18+ years, had stage I-IIIA breast cancer, and were eligible for breast-conserving and mastectomy surgery. Participants completed surveys about out-of-pock...

Background Conversation aids can facilitate shared decision making and improve patient-centered outcomes. However, there are few examples of sustained use of conversation aids in routine care due to numerous barriers at clinical and organizational levels. We explored strategies that will promote the sustained use of two early-stage breast cancer co...

Background: Despite decades of ethical, empirical, and policy support, shared decision-making (SDM) has failed to become standard practice in US cancer care. Organizational and health system characteristics appear to contribute to the difficulties in implementing SDM in routine care. However, little is known about the relevance of the different ch...

Context No brief patient-reported experience measure focuses on the most significant concerns of seriously ill individuals. We aimed to develop one called the consideRATE questions. Methods This user-centered design study had three phases. We reviewed the literature and consulted stakeholders, including caregivers, clinicians, and researchers, to...

BACKGROUND Some researchers argue that the successful implementation of patient decision aids (PDAs) into clinical workflows depends on their integration into electronic health records (EHRs). Anecdotally, we know that EHR integration is a complex and time-consuming task; yet, the process has not been examined in detail. As part of an implementatio...

Objectives To determine if two encounter conversation aids for early-stage breast cancer surgery increased observed and patient-reported shared decision making (SDM) compared with usual care and if observed and patient-reported SDM were associated. Methods Surgeons in a cluster randomized trial at four cancer centers were randomized to use an Opti...

This focused systematic review was about herniated (slipped discs) and the pain they may cause on nerves and extremities. These can cause pain, numbness, and tingling in your legs and other areas of your body. This review looked at the efficacy of the more common treatments today. The treatments included self-care, physical therapy or guided exerci...

Objectives To identify and describe instances of routine patient-reported shared decision-making (SDM) measurement in the USA, and to explore barriers and facilitators of routine patient-reported SDM measurement for quality improvement. Setting Payer and provider healthcare organisations in the USA. Participants Current or former adult employees...

e19139 Background: Rectal cancer surgery drastically changes the lives of patients. Decision aids available to guide patients on this decision are limited and of poor quality. We aimed to identify the content and delivery preferences of rectal cancer survivors who have faced this surgical decision and colorectal surgeons to guide future decision ai...

This is about patients that are BRCA1 and/or 2 positive looking to consider a bilateral-risk reducing mastectomy. This focused systematic review looks into the decision to get surgery versus not getting surgery and waiting to get further prevention and results before getting surgery. https://health.ebsco.com/products/dynamed-shared-decisions/clini...

This focused systematic review is looking into women who have or already had breast cancer and are BRCA1 and/or BRCA2 positive and are looking to mitigate more of their risk. This review considers the efficacy of contralateral-risk-reducing mastectomy and its possible benefit or outcome. https://health.ebsco.com/products/dynamed-shared-decisions/c...

This focused systematic review explores the efficacy of different options commonly used to quit smoking. The options considered in this review are quitting on your own, counseling, nicotine replacements, Bupropion, and Varenicline. https://health.ebsco.com/products/dynamed-shared-decisions/clinical-decision-support

Objective Assess the effect of pictorial health information on patients’ and consumers’ health behaviors and outcomes, evaluate these effects in lower health literacy populations, and examine the attributes of the interventions. Methods We included randomized controlled trials (RCTs) that assessed the effect of pictorial health information on pati...

In the past decades, extensive research has been performed on the phenomenon of unwarranted clinical variation in clinical practice. Many studies have been performed on signaling, describing and visualizing clinical variation. We argue that it is time for next steps in practice variation research. In addition to describing and signaling variation p...

An overarching framework, describing the elements of patient and family engagement and how to develop interventions, provides a matrix covering the continuum of engagement and illustrating how these can be achieved at different levels of care. This chapter uses this framework to summarize the evidence about the influence of patient engagement on he...

Objective To investigate the association between patients' preferred treatment and eventual treatment. Second, to compare patients with surgical treatment to watchful waiting in order to identify predictive factors for surgery. Methods A single‐centre retrospective study was performed between December 2015 and August 2018. Patients (≥18 years) who...

Importance Shared decision-making (SDM) is widely advocated for patients with valvular heart disease yet is not integrated into the heart team model for patients with symptomatic aortic stenosis. Decision aids (DAs) have been shown to improve patient-centered outcomes and may facilitate SDM. Objective To determine whether the repeated use of a DA...

Background. Patients frequently worry about care costs, but clinicians seldom address the topic. Cost information is not typically included in patient decision aids (DAs). We examined whether including cost information in an encounter DA, with clinician training, influenced cost conversations. Method. As part of a larger trial, 14 surgeons from 4 c...