Project description:BackgroundInvolving patient and community stakeholders in clinical trials adds value by ensuring research prioritizes patient goals both in conduct of the study and application of the research. The use of stakeholder committees and their impact on the conduct of a multicenter clinical trial have been underreported clinically and academically. The aim of this study is to describe how Study Advisory Committee (SAC) recommendations were implemented throughout the Emergency Medicine Palliative Care Access (EMPallA) trial. EMPallA is a multi-center, pragmatic two-arm randomized controlled trial (RCT) comparing the effectiveness of nurse-led telephonic case management and specialty, outpatient palliative care of older adults with advanced illness.MethodsA SAC consisting of 18 individuals, including patients with palliative care experience, members of healthcare organizations, and payers was convened for the EMPallA trial. The SAC engaged in community-based participatory research and assisted in all aspects from study design to dissemination. The SAC met with the research team quarterly and annually from project inception to dissemination. Using meeting notes and recordings we completed a qualitative thematic analysis using an iterative process to develop themes and subthemes to summarize SAC recommendations throughout the project's duration.ResultsThe SAC convened 16 times between 2017 and 2020. Over the course of the project, the SAC provided 41 unique recommendations. Twenty-six of the 41 (63%) recommendations were adapted into formal Institutional Review Board (IRB) study modifications. Recommendations were coded into four major themes: Scientific, Pragmatic, Resource and Dissemination. A majority of the recommendations were related to either the Scientific (46%) or Pragmatic (29%) themes. Recommendations were not mutually exclusive across three study phases: Preparatory, execution and translational. A vast majority (94%) of the recommendations made were related to the execution phase. Major IRB study modifications were made based on their recommendations including data collection of novel dependent variables and expanding recruitment to Spanish-speaking patients.ConclusionsOur study provides an example of successful integration of a SAC in the conduct of a pragmatic, multi-center RCT. Future trials should engage with SACs in all study phases to ensure trials are relevant, inclusive, patient-focused, and attentive to gaps between health care and patient and family needs.Trial registrationClinicaltrials.gov Identifier: NCT03325985, 10/30/2017.

Project description:ObjectivesPrecision medicine is data-driven health care tailored to individual patients based on their unique attributes, including biologic profiles, disease expressions, local environments, and socioeconomic conditions. Emergency medicine (EM) has been peripheral to the precision medicine discourse, lacking both a unified definition of precision medicine and a clear research agenda. We convened a national consensus conference to build a shared mental model and develop a research agenda for precision EM.MethodsWe held a conference to (1) define precision EM, (2) develop an evidence-based research agenda, and (3) identify educational gaps for current and future EM clinicians. Nine preconference workgroups (biomedical ethics, data science, health professions education, health care delivery and access, informatics, omics, population health, sex and gender, and technology and digital tools), comprising 84 individuals, garnered expert opinion, reviewed relevant literature, engaged with patients, and developed key research questions. During the conference, each workgroup shared how they defined precision EM within their domain, presented relevant conceptual frameworks, and engaged a broad set of stakeholders to refine precision EM research questions using a multistage consensus-building process.ResultsA total of 217 individuals participated in this initiative, of whom 115 were conference-day attendees. Consensus-building activities yielded a definition of precision EM and key research questions that comprised a new 10-year precision EM research agenda. The consensus process revealed three themes: (1) preeminence of data, (2) interconnectedness of research questions across domains, and (3) promises and pitfalls of advances in health technology and data science/artificial intelligence. The Health Professions Education Workgroup identified educational gaps in precision EM and discussed a training roadmap for the specialty.ConclusionsA research agenda for precision EM, developed with extensive stakeholder input, recognizes the potential and challenges of precision EM. Comprehensive clinician training in this field is essential to advance EM in this domain.

Project description:BACKGROUND: A compelling ethical rationale supports patient engagement in healthcare research. It is also assumed that patient engagement will lead to research findings that are more pertinent to patients' concerns and dilemmas. However; it is unclear how to best conduct this process. In this systematic review we aimed to answer 4 key questions: what are the best ways to identify patient representatives? How to engage them in designing and conducting research? What are the observed benefits of patient engagement? What are the harms and barriers of patient engagement? METHODS: We searched MEDLINE, EMBASE, PsycInfo, Cochrane, EBSCO, CINAHL, SCOPUS, Web of Science, Business Search Premier, Academic Search Premier and Google Scholar. Included studies were published in English, of any size or design that described engaging patients or their surrogates in research design. We conducted an environmental scan of the grey literature and consulted with experts and patients. Data were analyzed using a non-quantitative, meta-narrative approach. RESULTS: We included 142 studies that described a spectrum of engagement. In general, engagement was feasible in most settings and most commonly done in the beginning of research (agenda setting and protocol development) and less commonly during the execution and translation of research. We found no comparative analytic studies to recommend a particular method. Patient engagement increased study enrollment rates and aided researchers in securing funding, designing study protocols and choosing relevant outcomes. The most commonly cited challenges were related to logistics (extra time and funding needed for engagement) and to an overarching worry of a tokenistic engagement. CONCLUSIONS: Patient engagement in healthcare research is likely feasible in many settings. However, this engagement comes at a cost and can become tokenistic. Research dedicated to identifying the best methods to achieve engagement is lacking and clearly needed.

Project description:BackgroundThe optimal application of spinal motion restriction (SMR) in the prehospital setting continues to be debated. Few studies have examined how changing guidelines have been received and interpreted by emergency medical services (EMS) personnel. This study surveys paramedics' attitudes, observations, and self-reported practices around the treatment of potential spine injuries in the prehospital setting.MethodsThis was a cross-sectional survey of a North American EMS agency. After development and piloting, the final version of the survey contained four sections covering attitudes towards 1) general practice, 2) specific techniques, 3) assessment protocols, and 4) mechanisms of injury (MOI). Questions used Likert-scale, multiple-choice, yes/no, and free-text responses. Exploratory factor analysis (EFA) was used to identify latent constructs within responses, and factor scores were analyzed by ordinal logistic regression for associations with demographic characteristics (including qualification level, gender, and years of experience). MOI evaluations were assessed for inter-rater reliability (Fleiss' kappa). Inductive qualitative content analysis, following Elo & Kyngäs (2008), was used to examine free-text responses.ResultsTwo hundred twenty responses were received (36% of staff). Raw results indicated that respondents felt that SMR was seen as less important than in the past, that they were treating fewer patients than previously, and that they follow protocol in most situations. The EFA identified two factors: one (Judging MOIs) captured paramedics' estimation that the presented MOI could potentially cause a spine injury, and another (Treatment Value) reflected respondents' composite view of the effectiveness, importance, and applicability of SMR. Respondents with advanced life support (ALS) qualification were more likely to be skeptical of the value of SMR compared to those at the basic life support (BLS) level (OR: 2.40, 95%CI: 1.21-4.76, p = 0.01). Overall, respondents showed fair agreement in the evaluation of MOIs (k = 0.31, 95%CI: 0.09-0.49). Content analysis identified tension expressed by respondents between SMR-as-directed and SMR-as-applied.ConclusionResults of this survey show that EMS personnel are skeptical of many elements of SMR but use various strategies to balance protocol adherence with optimizing patient care. While identifying several areas for future research, these findings argue for incorporating provider feedback and judgement into future guideline revision.

Project description:BackgroundPatient engagement in research is a dominant discourse in clinical research settings as it is seen as a move toward sustainable and equitable health care systems. In Canada, a key driver is the Strategy for Patient-Oriented Research of the Canadian Institutes of Health Research, which asserts that meaningful patient engagement can only be fostered when stakeholders understand its value. This study assessed researchers' perceptions of the meaning and value of patient engagement in research within a Canadian cardiovascular research network. In doing so, the secondary aim was to inform the development of a structured patient engagement initiative by identifying potential challenges and related mitigation strategies.MethodsWe employed a multi-method strategy involving electronic surveys and semi-structured telephone interviews with network research scientists across Canada. Interview data were analyzed using thematic and content analysis. Survey data were analyzed using descriptive statistics.ResultsThirty-eight electronic surveys (response rate =33%) and 16 interviews were completed with network members. Some participants were uncertain about the meaning and value of patient engagement. While voicing guarded support, four challenges relating to patient engagement were identified from the interviews: 1) identification of representative and appropriate patients, 2) uncertainty about the scope of patients' roles given concerns about knowledge discrepancies, 3) a perceived lack of evidence of the impact of patient engagement, and 4) the need for education and culture change as a prerequisite for patient engagement. Research scientists were largely concerned that patients untrained in science and tasked with conveying an authentic patient experience and being a conduit for the voices of others might unsettle a traditional model of conducting research.ConclusionConcerns about patient involvement in research were related to a lack of clarity about the meaning, process, and impact of involvement. This study highlights the need for education on the meaning of patient engagement, evidence of its impact, and guidance on practical aspects of implementation within this research community.

Project description:IntroductionWhen used appropriately, focused limited-scope ultrasound exams could potentially provide paramedics with accurate and actionable diagnostic information to guide prehospital decision-making. In this study we aimed to investigate the impact of a 13-hour prehospital ultrasound training course on the simulated clinical decision-making of paramedics as well as their ultrasound skills, knowledge, and self-confidence.MethodsWe evaluated the ultrasound competence of 31 participants using post-course written and practical assessments. Written clinical decision scenarios were administered pre- and post-training. Post-training scenarios included an uninterpreted ultrasound clip to aid decision-making. Scenarios included extended focused assessment with sonography in trauma, pulmonary exam, and focused echocardiography combined with carotid pulse check exams. Correct answers to scenarios were defined as those selected by a veteran emergency physician. Participants also indicated their confidence in each of their decisions using a Likert scale.ResultsTraining yielded a statistically significant increase in both mean scenario score (35.5% absolute increase) and mean participant self-confidence (15.8% relative increase), across all exam/decision types assessed (P ≤ 0.001). The focused pulmonary exam yielded the largest increase in both mean score improvement (59.7% absolute increase) and paramedic confidence in their decisions (28.6% increase).ConclusionTrained paramedics can perform focused ultrasound exams and accurately interpret and apply actionable exam findings in the context of written scenarios. Analysis through our model characterized the theoretical clinical yield of each prehospital ultrasound exam and demonstrated how each exam may provide improved decision accuracy in several specific simulated clinical contexts. These results provide support for growing evidence that focused limited-scope ultrasound may be an effective prehospital diagnostic tool in the hands of trained paramedics.

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Patient and paramedic engagement in prehospital emergency medicine research.

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Patient and paramedic engagement in prehospital emergency medicine research.

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