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1.
Proc Natl Acad Sci U S A ; 119(44): e2203150119, 2022 11.
Artigo em Inglês | MEDLINE | ID: mdl-36306328

RESUMO

This study explores how researchers' analytical choices affect the reliability of scientific findings. Most discussions of reliability problems in science focus on systematic biases. We broaden the lens to emphasize the idiosyncrasy of conscious and unconscious decisions that researchers make during data analysis. We coordinated 161 researchers in 73 research teams and observed their research decisions as they used the same data to independently test the same prominent social science hypothesis: that greater immigration reduces support for social policies among the public. In this typical case of social science research, research teams reported both widely diverging numerical findings and substantive conclusions despite identical start conditions. Researchers' expertise, prior beliefs, and expectations barely predict the wide variation in research outcomes. More than 95% of the total variance in numerical results remains unexplained even after qualitative coding of all identifiable decisions in each team's workflow. This reveals a universe of uncertainty that remains hidden when considering a single study in isolation. The idiosyncratic nature of how researchers' results and conclusions varied is a previously underappreciated explanation for why many scientific hypotheses remain contested. These results call for greater epistemic humility and clarity in reporting scientific findings.


Assuntos
Análise de Dados , Pesquisadores , Humanos , Incerteza , Reprodutibilidade dos Testes
2.
Ecol Lett ; 27(3): e14395, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38467468

RESUMO

The publish-or-perish culture in academia has catalysed the development of an unethical publishing system. This system is characterised by the proliferation of journals and publishers-unaffiliated with learned societies or universities-that maintain extremely large revenues and profit margins diverting funds away from the academic community. Early career researchers (ECRs) are particularly vulnerable to the consequences of this publishing system because of intersecting factors, including pressure to pursue high impact publications, rising publication costs and job insecurity. Moving towards a more ethical system requires that scientists advocate for structural change by making career choices that come with risks, many of which disproportionately impact ECRs. We illuminate major issues facing ECRs in Ecology and Evolution under the current publishing system, and propose a portfolio of actions to promote systemic change that can be implemented by ECRs and established researchers.


Assuntos
Editoração
3.
BMC Med Res Methodol ; 24(1): 152, 2024 Jul 17.
Artigo em Inglês | MEDLINE | ID: mdl-39020325

RESUMO

When different researchers study the same research question using the same dataset they may obtain different and potentially even conflicting results. This is because there is often substantial flexibility in researchers' analytical choices, an issue also referred to as "researcher degrees of freedom". Combined with selective reporting of the smallest p-value or largest effect, researcher degrees of freedom may lead to an increased rate of false positive and overoptimistic results. In this paper, we address this issue by formalizing the multiplicity of analysis strategies as a multiple testing problem. As the test statistics of different analysis strategies are usually highly dependent, a naive approach such as the Bonferroni correction is inappropriate because it leads to an unacceptable loss of power. Instead, we propose using the "minP" adjustment method, which takes potential test dependencies into account and approximates the underlying null distribution of the minimal p-value through a permutation-based procedure. This procedure is known to achieve more power than simpler approaches while ensuring a weak control of the family-wise error rate. We illustrate our approach for addressing researcher degrees of freedom by applying it to a study on the impact of perioperative p a O 2 on post-operative complications after neurosurgery. A total of 48 analysis strategies are considered and adjusted using the minP procedure. This approach allows to selectively report the result of the analysis strategy yielding the most convincing evidence, while controlling the type 1 error-and thus the risk of publishing false positive results that may not be replicable.


Assuntos
Pesquisadores , Humanos , Pesquisadores/estatística & dados numéricos , Projetos de Pesquisa , Interpretação Estatística de Dados , Pesquisa Biomédica/métodos , Modelos Estatísticos , Complicações Pós-Operatórias/prevenção & controle
4.
J Pers ; 92(1): 5-15, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37697965

RESUMO

BACKGROUND: A surge of studies aims to identify environmental factors that explain individual differences, personality stability, and personality development. This special issue builds on this large interest and solicited articles on broad and narrow environmental factors of personality. OBJECTIVE: We provide an overview of the motivations behind the special issue, review each of the articles, and present data on researchers' perceptions of environmental factors contributing to personality expression and development. METHOD: We review 16 special issue articles, thematically grouped into seven topics-culture and race, genes and environment, geography and habitat, major/minor life events, social relationships, socioeconomic status and economic inequality, and work. We also present data on researchers' (N = 223) responses and ratings of environmental influences on personality expression and development. RESULTS: In the open-ended responses, the most important environmental influences were family, culture, peers, relationships, and trauma. Among the least important were weather, birth order, geography, climate, and shared environment. Nearly all the environmental influences featured in this special issue were considered at least somewhat important; however, there was considerable heterogeneity in how important researchers found each topic. CONCLUSIONS: There is no perfect consensus among researchers as to which environmental factors contribute most to personality expression and development. We hope that there is a larger surge of studies on personality constructs beyond traits, that contextualize concepts within a cultural and historical framework and develop more stringent theories to hypothesize about the environmental influences on personality.


Assuntos
Formação de Conceito , Personalidade , Humanos , Personalidade/genética , Transtornos da Personalidade , Desenvolvimento da Personalidade , Individualidade
5.
J Med Internet Res ; 26: e50890, 2024 Jan 30.
Artigo em Inglês | MEDLINE | ID: mdl-38289657

RESUMO

Machine learning (ML) has seen impressive growth in health science research due to its capacity for handling complex data to perform a range of tasks, including unsupervised learning, supervised learning, and reinforcement learning. To aid health science researchers in understanding the strengths and limitations of ML and to facilitate its integration into their studies, we present here a guideline for integrating ML into an analysis through a structured framework, covering steps from framing a research question to study design and analysis techniques for specialized data types.


Assuntos
Aprendizado de Máquina , Reforço Psicológico , Humanos , Projetos de Pesquisa , Pesquisadores
6.
Health Res Policy Syst ; 22(1): 88, 2024 Jul 31.
Artigo em Inglês | MEDLINE | ID: mdl-39085902

RESUMO

BACKGROUND: Embedded researchers are a novel intervention to improve the translation of research evidence into policy and practice settings, including public health. These roles are being implemented with increasing popularity, but they often lack clear evaluative frameworks. Understanding initial levels of research activity, including associated barriers and opportunities, is essential to developing theories of change and thus shaping the roles and defining expectations. We aimed to identify the principal determinants of research activity in public health that contextualise embedded researcher roles, including attributes of the embedded researcher themselves. METHODS: We undertook seventeen semi-structured interviews with embedded researchers in diverse public health settings in English local government. Interviews were analysed using thematic analysis. RESULTS: We identified thirteen interlinked determinants of research activity within local government public health settings. Research and interpersonal skills, as well as pre-existing connections and knowledge within local government, were highly valued individual attributes for embedded researchers. Resource deficiencies (funding, time, and infrastructure) were primary barriers to research activity, whereas a strong local appetite for evidence informed decision making presented a valuable opportunity. However, there was inconsistencies across public health teams relating to perceptions of what constituted "research" and the resources that would be required. CONCLUSIONS: Our results suggest that successful embedded researchers will have equally strong research and communication skills and should be offered mentorship and clear career progression pathways. Perceptions of research within local government are closely linked to resource deficiencies and senior endorsement. Embedded researchers could benefit from taking the time to develop locally contextualised knowledge of this research culture. Theories of change for embedded researchers should conceptualise the interconnections across individual, interpersonal, and organisational barriers and opportunities underlying local government research activity. Further research is needed to identify methods for exploring the influence of embedded researchers as well as to unpack the stages of research activity within local government and the associated behaviours.


Assuntos
Governo Local , Saúde Pública , Pesquisadores , Humanos , Entrevistas como Assunto , Pesquisa Qualitativa , Pesquisa Translacional Biomédica , Pesquisa sobre Serviços de Saúde , Mentores , Papel Profissional , Política de Saúde , Comunicação , Tomada de Decisões
7.
Int J Biometeorol ; 68(7): 1475-1481, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38656350

RESUMO

The decision to establish a network of researchers centers on identifying shared research goals. Ecologically specific regions, such as the USA's National Ecological Observatory Network's (NEON's) eco-climatic domains, are ideal locations by which to assemble researchers with a diverse range of expertise but focused on the same set of ecological challenges. The recently established Great Lakes User Group (GLUG) is NEON's first domain specific ensemble of researchers, whose goal is to address scientific and technical issues specific to the Great Lakes Domain 5 (D05) by using NEON data to enable advancement of ecosystem science. Here, we report on GLUG's kick off workshop, which comprised lightning talks, keynote presentations, breakout brainstorming sessions and field site visits. Together, these activities created an environment to foster and strengthen GLUG and NEON user engagement. The tangible outcomes of the workshop exceeded initial expectations and include plans for (i) two journal articles (in addition to this one), (ii) two potential funding proposals, (iii) an assignable assets request and (iv) development of classroom activities using NEON datasets. The success of this 2.5-day event was due to a combination of factors, including establishment of clear objectives, adopting engaging activities and providing opportunities for active participation and inclusive collaboration with diverse participants. Given the success of this approach we encourage others, wanting to organize similar groups of researchers, to adopt the workshop framework presented here which will strengthen existing collaborations and foster new ones, together with raising greater awareness and promotion of use of NEON datasets. Establishing domain specific user groups will help bridge the scale gap between site level data collection and addressing regional and larger ecological challenges.


Assuntos
Conferências de Consenso como Assunto , Ecologia , Great Lakes Region , Consenso
8.
J Adv Nurs ; 2024 Jul 02.
Artigo em Inglês | MEDLINE | ID: mdl-38956892

RESUMO

AIM: To describe the pre-implementation context and implementation approach, for a clinician researcher career pathway. BACKGROUND: Clinician researchers across all health disciplines are emerging to radically influence practice change and improve patient outcomes. Yet, to date, there are limited clinician researcher career pathways embedded in clinical practice for nurses and midwives. METHODS: A qualitative descriptive design was used. DATA SOURCES: Data were collected from four online focus groups and four interviews of health consumers, nursing and midwifery clinicians, and nursing unit managers (N = 20) between July 2022 and September 2023. RESULTS: Thematic and content analysis identified themes/categories relating to: Research in health professionals' roles and nursing and midwifery, and Research activity and culture (context); with implementation approaches within coherence, cognitive participation, collective action and reflexive monitoring (Normalization Process Theory). CONCLUSIONS: The Pathway was perceived to meet organizational objectives with the potential to create significant cultural change in nursing and midwifery. Backfilling of protected research time was essential. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: The Pathway was seen as an instrument to empower staff, foster staff retention and extend research opportunities to every nurse and midwife, while improving patient experiences and outcomes. IMPACT: Clinicians, consumers and managers fully supported the implementation of clinician researchers with this Pathway. The Pathway could engage all clinicians in evidence-based practice with a clinician researcher leader, effect practice change with colleagues and enhance patient outcomes. REPORTING METHOD: This study adheres to relevant EQUATOR guidelines using the COREG checklist. PATIENT OR PUBLIC CONTRIBUTION: Health consumers involved in this research as participants, did not contribute to the design or conduct of the study, analysis or interpretation of the data, or in the preparation of the manuscript.

9.
Alzheimers Dement ; 20(2): 1321-1333, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37983858

RESUMO

INTRODUCTION: Early-career researchers contribute significantly to dementia research and clinical practice. However, a growing group of early-career dementia researchers (ECDRs) lack appropriate support throughout their careers. Thus, we aim to (i) explore support needs, (ii) determine recommendations, and (iii) set the agenda for organizations to better support ECDRs. METHODS: An iterative, explanatory sequential mixed-methods design was applied. First ECDRs' needs were identified using an online survey informed by the Vitae Researcher Development Framework. Next, priority areas were selected and explored qualitatively with ECDRs in two workshops, utilizing the World Café methodology. RESULTS: Sixty-five ECDRs throughout Europe completed the survey, with the majority reporting that greater support is needed in terms of funding and career opportunities, social support and well-being, and "wide-reaching" dissemination. DISCUSSION: Based on the findings, six recommendations for support organizations, funding bodies, and universities to better support ECDRs are formulated, each intended for specific target audiences. HIGHLIGHTS: This article reports on focal points of career-related support needed in doctoral education and postdoctoral employment to foster a healthier academic environment, including finance, work-life balance, dissemination of research findings, and supervision, both in general and in dementia fields specifically. Funding and resources were identified as a significant challenge, and there was a call for more long-term positions and transition funding for postdoctoral researchers. Early-career dementia researchers addressed the need for support in producing outputs for non-academic audiences, including people living with dementia. The importance of disseminating research to diverse audiences has long been recognized; thus, it is critical that early-career dementia researchers be supported in this effort. Recommendations were formulated for researcher support (organizations), funding bodies, and universities. These recommendations include providing support for disseminating research to non-academic audiences, offering training in supervision skills, and promoting peer-to-peer mentoring and social activities for early-career dementia researchers.


Assuntos
Demência , Pesquisadores , Humanos , Europa (Continente) , Pesquisadores/educação , Demência/terapia
10.
Qual Health Res ; 34(7): 676-690, 2024 06.
Artigo em Inglês | MEDLINE | ID: mdl-38235734

RESUMO

Interviews with individuals experiencing homelessness can be challenging for various reasons, including mental and physical health issues, substance use, and negative experiences with authority figures. Researchers have used photos to facilitate communication and empower participants during data collection. We analyzed data from a previous study to explore the use of researcher-generated photos during interviews about health with 13 women experiencing homelessness. Conversation analysis revealed clear patterns regarding the use of the photos during the interviews. The photos were referred to 118 times over the total interview length, 6 hours and 23 minutes, with the interviewer making 62% of the referrals and the women accounting for 38%. Fifty-nine percent of the referrals occurred within the first 5 minutes of the interviews. The women used the photos to trigger associations and emotions, to describe photo content, or in a minor role during the interview. Interpretations from an advisory board of six women with lived experiences of homelessness suggested that the photos did not engage participants as intended, highlighting the importance of considering participants' perspectives when designing photo-elicitation methods. The feedback also provided valuable insights into interview locations and incentives in research that may have influenced the women's willingness to use the photos. This study emphasizes the importance of understanding the complexity of choosing researcher-generated photos in interviews with underserved, hard-to-reach populations.


Assuntos
Pessoas Mal Alojadas , Entrevistas como Assunto , Fotografação , Pesquisa Qualitativa , Humanos , Pessoas Mal Alojadas/psicologia , Feminino , Adulto , Pessoa de Meia-Idade , Comportamento Cooperativo
11.
Qual Health Res ; : 10497323241244957, 2024 Jun 21.
Artigo em Inglês | MEDLINE | ID: mdl-38904194

RESUMO

The COVID-19 pandemic has raised a wide range of challenges for qualitative researchers, especially when most of the world was facing isolation during the first wave in 2020. The scientific literature rapidly raised discussion regarding data collection adaptation for remote inquiry and ethical dilemmas. However, it is still necessary to discuss the implications of running qualitative studies as a researcher immersed in a global emergency, precisely when the researchers themselves are involved in this context. To what extent, or in what way, can being fully immersed in this context influence all phases of the research? What is the role of reflexivity in this context? We proposed a new discussion based on the study we performed remotely in 2020, among infected pregnant women, using concepts of the Freudian feeling of uncanny to explore the life experience of the researcher. We also considered the concept of the discourse of the master from Jacques Lacan to debate the researchers' position during the pandemic and to bring practical implications.

12.
Alzheimers Dement ; 20(7): 4727-4736, 2024 07.
Artigo em Inglês | MEDLINE | ID: mdl-38865429

RESUMO

INTRODUCTION: Despite representing an essential workforce, it is unclear how global policy efforts target early-career dementia researchers (ECDRs). Thus, this study aimed to provide an overview of policies through which ECDRs are considered and supported by dementia plans and organizations. METHODS: G20 member states were evaluated for their national dementia plan alongside policies of leading dementia organizations. Data targeting support for ECDRs were extracted and subject to content analysis using inductive coding. Findings were categorized and narratively synthesized. RESULTS: Only China, Denmark, England, Greece, Northern Ireland, Scotland, Spain, and the United States mentioned ECDRs in their national plan. Additionally, 17 countries formalized ECDR support via dementia organizations. Support efforts included research funding, dissemination and networking, career development, and research advice. DISCUSSION: Few nations formally recognized ECDRs in dementia plans or through dementia organizations. To facilitate equal prospects for ECDRs, top-down approaches are urged to enhance and align their efforts. HIGHLIGHTS: Few G20 countries (8/46) had national dementia plans for early-career researchers. Targeted support comes from government and nongovernmental dementia organizations. Support includes funding, training, advice, research dissemination, and networking. Inconsistent definitions and eligibility criteria are barriers to accessing support. Global coordination and top-down policy will aid early-career dementia researchers.


Assuntos
Demência , Pesquisadores , Humanos , Demência/terapia , Pesquisa Biomédica , Política de Saúde
13.
BMC Nurs ; 23(1): 611, 2024 Sep 02.
Artigo em Inglês | MEDLINE | ID: mdl-39218864

RESUMO

AIM: To evaluate the experience and effectiveness of six semi-structured writing retreats on research publication quantity and quality for nursing and midwifery academics and research students. BACKGROUND: Research publications are necessary to develop a track record to gain competitive funding and for promotion. Publications also improve the standing of universities because their performance is measured in-part by research outputs. However, there are challenges to writing for publication, especially for new nursing and midwifery academics and research students. Therefore, four of the authors initiated semi-structured writing retreats to support nursing and midwifery academics and research students to overcome these challenges. METHODS: A mixed methods exploratory sequential design consisting of two distinct phases and data collection methods. In phase one, an online evaluation was administered to collect participant experiences which were then analysed using content analysis. In phase two, data about the quantity and quality of publications arising from each retreat was collected, and descriptive statistics performed. RESULTS: A total of 70 participants responded to the online evaluation. Qualitative analysis of their responses demonstrated that the writing retreats were highly valued as they offered a collaborative environment with dedicated time to focus on writing for publication. Quantitative analysis identified 81 publications were planned over the six writing retreats. Of these, 60 have been published, 5 are under review, 5 have not yet been submitted, and 11 were abandoned. CONCLUSIONS: Findings demonstrated that our six semi-structured writing retreats enabled and developed nursing and midwifery academics and research students writing for publication. Semi-structured writing retreats are a research investment that enabled preparation of high-quality publications by offering protected time to write, expert peer review and collaboration and networking opportunities.

14.
Nurs Inq ; 31(1): e12611, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-37882249

RESUMO

In this article, we discuss the practice of conducting research in one's own field, in this case, from a position as a researcher with a nursing background doing fieldwork in a hospital and in one's own organization, an orthopedic surgical department. We show how an "insider" researcher position paves the way for analytical insights about sleep as an institutional phenomenon in the orthopedic surgical infrastructure and how acute and elective patient trajectories differ but build on the same logic, creating the same dynamics of inclusion and exclusion. Through a situated and sociomaterial perspective, we analyze different clinical interactions in which we follow the hospital bed as an example of a central relational element that co-creates sleep as an institutional phenomenon. Inspired by Karen Barad, we demonstrate how to move diffractively when doing and analyzing fieldwork and argue how moving diffractively as a researcher doing fieldwork "at home" is productive and challenges the concept and demand of "distance" as the phenomenological exercise in fieldwork.


Assuntos
Pesquisa em Enfermagem
15.
Behav Res Methods ; 56(3): 1994-2012, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-37540470

RESUMO

Outcome reporting bias (ORB) refers to the biasing effect caused by researchers selectively reporting outcomes within a study based on their statistical significance. ORB leads to inflated effect size estimates in meta-analysis if only the outcome with the largest effect size is reported due to ORB. We propose a new method (CORB) to correct for ORB that includes an estimate of the variability of the outcomes' effect size as a moderator in a meta-regression model. An estimate of the variability of the outcomes' effect size can be computed by assuming a correlation among the outcomes. Results of a Monte-Carlo simulation study showed that the effect size in meta-analyses may be severely overestimated without correcting for ORB. Estimates of CORB are close to the true effect size when overestimation caused by ORB is the largest. Applying the method to a meta-analysis on the effect of playing violent video games on aggression showed that the effect size estimate decreased when correcting for ORB. We recommend to routinely apply methods to correct for ORB in any meta-analysis. We provide annotated R code and functions to help researchers apply the CORB method.


Assuntos
Viés , Humanos , Simulação por Computador
16.
Int J Psychol ; 2024 Jul 18.
Artigo em Inglês | MEDLINE | ID: mdl-39030767

RESUMO

Even when guided by strong theories and sound methods, researchers must often choose a singular course of action from multiple viable alternatives. Regardless of the choice, it, along with all other choices made during the research process, individually and collectively affects study results, often in unpredictable ways. The inability to disentangle how much of an observed effect is attributable to the phenomenon of interest, and how much is attributable to what have come to be known as researcher degrees of freedom (RDF), slows theoretical progress and stymies practical implementation. However, if one could examine the results from a particular set of RDF (known as a universe) against a systematically and comprehensively determined background of alternative viable universes (known as a multiverse), then the effects of RDF can be directly examined to provide greater context and clarity to future researchers, and greater confidence in the recommendations to practitioners. This tutorial demonstrates a means to map result variability directly and efficiently, and empirically investigate RDF impact on conclusions via multiverse analysis. Using the R package multiverse, we outline best practices in planning, executing and interpreting of multiverse analyses.

17.
J Gen Intern Med ; 38(3): 661-666, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-35794309

RESUMO

BACKGROUND: Besides the number of publications, the number of citations is another key metric often used to compare researchers with each other. While women researchers tend to have fewer publications than their men colleagues, the data is scarce for the number of citations. We aimed to determine whether there is a gender gap in citations. METHODS: We used Web of Science to retrieve the number of citations per year for all research articles and reviews published between January 2015 and December 2019 in fourteen high-impact general medical journals (impact factor > 5). We used Gender API to identify the gender of the first/last authors. We compared the results by gender using multivariable negative binomial regressions (adjusting for intra-cluster correlations within journals). RESULTS: The gender of the first/last author was determined for 13,218/13,350 (99%) and 11,894/12,026 (99%) articles, respectively. The proportion of women among first/last authors was 40% and 29%, respectively. The median number of citations per year was 5 (IQR = 11.3) for women and 6.8 (IQR = 17.8) for men for first authors (IRR = 1.5 [95% CI = 1.3-1.8], p value < 0.001), and 6 (IQR = 12.4) and 7.5 (IQR = 17.4) for last authors (IRR = 1.3 [95% CI = 1.2-1.5], p value < 0.001). Articles whose first and last authors were women were the least cited and those whose first and last authors were men were the most cited. CONCLUSION: In this cross-sectional study, we found that articles authored by women were cited less often than those authored by men. Further studies are needed to explore the reasons for these gender differences in article citations.


Assuntos
Equidade de Gênero , Publicações Periódicas como Assunto , Masculino , Humanos , Feminino , Estudos Transversais , Fatores Sexuais , Pesquisadores
18.
Clin Trials ; 20(6): 649-660, 2023 12.
Artigo em Inglês | MEDLINE | ID: mdl-37515519

RESUMO

BACKGROUND/AIMS: Sharing trial results with participants is an ethical imperative but often does not happen. Show RESPECT (ISRCTN96189403) tested ways of sharing results with participants in an ovarian cancer trial (ISRCTN10356387). Sharing results via a printed summary improved patient satisfaction. Little is known about staff experience and the costs of communicating results with participants. We report the costs of communication approaches used in Show RESPECT and the views of site staff on these approaches. METHODS: We allocated 43 hospitals (sites) to share results with trial participants through one of eight intervention combinations (2 × 2 × 2 factorial; enhanced versus basic webpage, printed summary versus no printed summary, email list invitation versus no invitation). Questionnaires elicited data from staff involved in sharing results. Open- and closed-ended questions covered resources used to share results and site staff perspectives on the approaches used. Semi-structured interviews were conducted. Interview and free-text data were analysed thematically. The mean additional site costs per participant from each intervention were estimated jointly as main effects by linear regression. RESULTS: We received questionnaires from 68 staff from 41 sites and interviewed 11 site staff. Sites allocated to the printed summary had mean total site costs of sharing results £13.71/patient higher (95% confidence interval (CI): -3.19, 30.60; p = 0.108) than sites allocated no printed summary. Sites allocated to the enhanced webpage had mean total site costs £1.91/patient higher (95% CI: -14, 18.74; p = 0.819) than sites allocated to the basic webpage. Sites allocated to the email list had costs £2.87/patient lower (95% CI: -19.70, 13.95; p = 0.731) than sites allocated to no email list. Most of these costs were staff time for mailing information and handling patients' queries. Most site staff reported no concerns about how they had shared results (88%) and no challenges (76%). Most (83%) found it easy to answer queries from patients about the results and thought the way they were allocated to share results with participants would be an acceptable standard approach (76%), with 79% saying they would follow the same approach for future trials. There were no significant effects of the randomised interventions on these outcomes. Site staff emphasised the importance of preparing patients to receive the results, including giving opt-in/opt-out options, and the need to offer further support, particularly if the results could confuse or distress some patients. CONCLUSIONS: Adding a printed summary to a webpage (which significantly improved participant satisfaction) may increase costs to sites by ~£14/patient, which is modest in relation to the cost of trials. The Show RESPECT communication interventions were feasible to implement. This information could help future trials ensure they have sufficient resources to share results with participants.


Assuntos
Neoplasias Ovarianas , Feminino , Humanos , Estudos de Viabilidade , Inquéritos e Questionários , Análise Custo-Benefício
19.
Am J Respir Crit Care Med ; 205(10): 1145-1158, 2022 05 15.
Artigo em Inglês | MEDLINE | ID: mdl-35500908

RESUMO

This year marks the 50th anniversary of the uncovering of the Tuskegee syphilis study, when the public learned that the Public Health Service (precursor of the CDC) for 40 years intentionally withheld effective therapy against a life-threatening illness in 400 African American men. In 2010, we learned that the same research group had deliberately infected hundreds of Guatemalans with syphilis and gonorrhea in the 1940s, with the goal of developing better methods for preventing these infections. Despite 15 journal articles detailing the results, no physician published a letter criticizing the Tuskegee study. Informed consent was never sought; instead, Public Health Service researchers deceived the men into believing they were receiving expert medical care. The study is an especially powerful parable because readers can identify the key players in the narrative and recognize them as exemplars of people they encounter in daily life-these flesh-and-blood characters convey the principles of research ethics more vividly than a dry account in a textbook of bioethics. The study spurred reforms leading to fundamental changes in the infrastructure of research ethics. The reason people fail to take steps to halt behavior that in retrospect everyone judges reprehensible is complex. Lack of imagination, rationalization, and institutional constraints are formidable obstacles. The central lessons from the study are the need to pause and think, reflect, and examine one's conscience; the courage to speak; and above all the willpower to act. History, although about the past, is our best defense against future errors and transgressions.


Assuntos
Aniversários e Eventos Especiais , Sífilis , Humanos , Masculino , Negro ou Afro-Americano , História do Século XX , Consentimento Livre e Esclarecido , Estudos Longitudinais , Estados Unidos
20.
Health Expect ; 2023 Nov 21.
Artigo em Inglês | MEDLINE | ID: mdl-37990612

RESUMO

INTRODUCTION: Telepractice has the potential to align with the directive to reduce inequalities by United Nations Sustainable Development Goal 10. Telepractice additionally addresses a national digital health strategic plan for accessible digitally enabled models of care. To plan improvements, it is essential to understand the experience of telepractice for people with disability, which may be achieved through an approach such as journey mapping. The current article provides both a disability-specific case study and a methodological guide for the inclusion of customers and clinicians in the meaningful redevelopment of services. The Perth, Australia-based case study aimed to gain insights into the experience of telepractice for people with disability. The methodological aim describes using co-design to produce a journey map in collaboration with customers and clinicians, for potential replication in a wide range of health and social care contexts. METHOD: Interview transcripts gathered from a cohort of customer participants (n = 17) were used to inform the journey map. A group of customers (n = 5) and clinicians plus one manager (n = 5) distributed the findings onto a customer experience journey map during a co-design workshop. The journey map describes the emotional experience and actions taken, along five phases of a timeline through telepractice service interactions: (1) before, (2) selecting telepractice, (3) telepractice preparation, (4) during telepractice sessions and (5) after. RESULTS: A journey map visualisation of customer experiences was produced that identified strengths of telepractice service delivery (flexibility) while noting challenges (with technology) as opportunities for improvement. The consensus of participants was the desire to have access to telepractice currently and in the future, in addition to in-person delivery. CONCLUSION: These findings are valuable in the context of advocating for the incorporation of customers and clinicians through co-design workshops in the content analysis and creation of a journey map that is representative of the lived experience of accessing telepractice services. PATIENT OR PUBLIC CONTRIBUTION: The paper forms part of a larger co-design process that included customer participants throughout the design and planning of the project, inclusion of a peer researcher and the co-designers in the workshops, journey map and this article production.

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