Publications by authors named "Rachel Topazian"

While federal rulemaking is an essential part of American governance, it is not well understood by researchers and advocates. We surveyed 115 former regulators at the Environmental Protection Agency to understand their views on the kinds of information they valued most and their communication preferences (June-August 2023). Respondents highly valued information about the scope of a problem (96%), legal analysis (97%), technology assessments (96%), and impacts of a proposed rule (99%).

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Importance: The rise in attacks on public health officials has weakened the public health workforce and complicated COVID-19 mitigation efforts.

Objective: To examine the share of US adults who believed harassing or threatening public health officials because of COVID-19 business closures was justified and the factors shaping those beliefs.

Design, Setting, And Participants: The Johns Hopkins University COVID-19 Civic Life and Public Health Survey was fielded from November 11 to 30, 2020, and July 26 to August 29, 2021.

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Mask wearing and social distancing have been essential public health guidelines throughout the COVID-19 pandemic, but faced resistance from skeptical subgroups in the United States, including Republicans and evangelicals. We examined the effects of participation in ideologically heterogeneous civic associations on attitudes toward public health measures during the COVID-19 pandemic, particularly among partisan and religious subgroups most resistant to public health guidelines. We analyzed panel survey data from a nationally representative cohort of 1222 U.

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Background: To examine the relationship between civic association participation and psychological distress during the COVID-19 pandemic, particularly whether different forms of engagement mitigate the increased rates of psychological distress throughout 2020.

Methods: Panel survey data collected from a nationally representative cohort of 1222 U.S.

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Introduction: U.S. residents had varying experiences of the COVID-19 pandemic and social safety net policy in 2020.

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COVID-19 has stretched the U.S. social safety net and prompted federal legislation designed to ameliorate the pandemic's health and economic impacts.

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Background: Patient, public, consumer, and community (P2C2) engagement in organization-, community-, and systemlevel healthcare decision-making is increasing globally, but its formal evaluation remains challenging. To define a taxonomy of possible P2C2 engagement metrics and compare existing evaluation tools against this taxonomy, we conducted a systematic review.

Methods: A broad search strategy was developed for English language publications available from January 1962 through April 2015 in PubMed, Embase, Sociological Abstracts, PsycINFO, EconLit, and the gray literature.

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Objectives: To develop a valid, reliable measure that reflected the environment of respectfulness within the ICU setting.

Design: We developed a preliminary survey instrument based on conceptual domains of respect identified through prior qualitative analyses of ICU patient, family member, and clinician perspectives. The initial instrument consisted of 21 items.

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Background: For pragmatic clinical research comparing commonly used treatments, questions exist about if and how to notify participants about it and secure their authorization for participation.

Objective: To determine how patients react when they seek clinical care and encounter one of several different pragmatic clinical research studies.

Research Design: In an online survey using a between-subjects experimental design, respondents read and responded to 1 of 24 hypothetical research scenarios reflecting different types of studies and approaches to notification and authorization (eg, general notification, oral consent, written consent).

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Purpose: The purpose of the study is to develop a brief index of patient and family experiences of respect in the intensive care unit (ICU).

Materials And Methods: We designed a questionnaire with 44 items representing 12 themes that emerged from prior in-depth interviews with ICU patients and families. After pilot testing, items with minimal variability were eliminated.

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The presence of cardiac pacemakers and defibrillators complicates making end-of-life (EOL) medical decisions. Palliative care/medicine consultation (PCMC) may benefit patients and primary providers, but data are lacking. We retrospectively reviewed 150 charts of patients who underwent device deactivation at our tertiary care center (between November 1, 2008, and September 1, 2012), assessing for PCMC and outcomes.

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Background: Comparative effectiveness research (CER) and pragmatic clinical trials commonly test interventions that are in routine use and pose minimal incremental risk or burdens to patients who participate in this research. The objective of this study was to elicit the range of patients' views and opinions regarding a variety of different types of research on usual medical practices, especially notification and authorization for them.

Methods: We conducted twelve focus groups with adults in five U.

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Objective: Treating patients and family members with respect and dignity is a core objective of health care, yet it is unclear how best to measure this in the ICU setting. Accordingly, we sought to create a direct observation checklist to assess the "respect and dignity status" of an ICU.

Design: A draft checklist based on previous work was iteratively revised to enhance accuracy and feasibility.

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Aim: Practicing physicians inevitably become involved in pragmatic clinical trials (PCTs), including comparative effectiveness research. We sought to identify physicians' perspectives related to PCTs.

Methods: In-depth semistructured interviews with 20 physicians in the USA.

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Background: Few patients decline therapy of a cardiovascular implantable electronic device (CIED), and little is known about the characteristics or reasoning of those who do. Our objective was to describe the reasons why patients decline CIED implantation using qualitative methods.

Methods: Qualitative, engaging thematic analysis.

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Background: Patients undergo major physical and psychological changes after implantation of a left ventricular assist device as destination therapy (DT). We sought to qualitatively study outcomes and attitudes of patients after DT.

Methods And Results: Ambulatory outpatients with DT at our institution were invited to be interviewed between June and August 2011.

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Staff and students working in health care settings are sometimes reluctant to speak up when they perceive patients to be at risk for harm. In this article, we describe four incidents that occurred at our institution (Mayo Clinic). In two of them, health care professionals failed to speak up, which resulted in harm; in the other two, they did speak up, which prevented harm and improved patient care.

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