With both the cost and quality of health care under scrutiny, many in the health care industry have turned to outcomes research and practice guidelines for answers. But many physicians have resisted, claiming their clinical judgment is a better guide. Both camps may be right.

The goal of this project was to expand an existing public health law curriculum to incorporate lessons on population health outcomes research, extra-legal advocacy, and the population health perspective. The project also created opportunities for students not only to read about and discuss concepts, but also to employ the lessons more practically through exercises and by writing white papers on public health law reform topics relevant to population health in Missouri. To do this, the project expanded an existing (...) didactic course and created a new credit-bearing, experiential “Lab.”. (shrink)

We know from the research literature that psychotherapy is effective, but we also know that hundreds of diverse therapies are being practiced that have not been subjected to scientific scrutiny; thus, in some circumstances iatrogenic effects do occur. Therefore, it is crucial that we recognize and implement therapeutic interventions that are evidence based rather than succumb to ethical dilemma, frustration, and complacency. Recommendations for family therapists are discussed, including the need to (a) keep abreast of research findings, (b) (...) translate research findings and developments as they apply to clinical practice, (c) prioritize techniques and intervention models, and (d) reexamine funding priorities and research foci. (shrink)

Outcomes research is topical in discussions about health-related research. Its emphasis on effectiveness creates an important opportunity for nurse researchers to strengthen the linkages between theory, outcomes research and nursing practice but, before care can be more effective, it is logical to establish patients’ desired outcomes. A thorough review of the implications of this requirement for the care of hospice patients is needed, but is lacking in the literature. Therefore, the literature on a ‘good (...) death’ is reviewed as a step towards assisting hospice patients to achieve what they regard as an acceptable death. The starting point is to define more clearly what it means to die a good death. The relationship between hospice care and achieving a good death is then examined. (shrink)

This paper discusses several philosophical problems with the use of randomized clinical trials in psychotherapy outcome research. The problems include: the impermanence problem, the identification problem, and idiographic problems. The paper concludes with an assessment of the overall case for and against the use of RCTs in psychotherapy outcome research.

In Nigeria, as in other developing countries, access to training in research ethics is limited, due to weak social, economic, and health infrastructure. The project described in this article was designed to develop the capacity of academic staff of the College of Medicine, University of Ibadan, Nigeria to conduct ethically acceptable research involving human participants.

In the introduction to a recent anthology of contemporary issues in philosophy of psychiatry, editors Jeffrey Poland and Şerife Tekin declare this to be a moment of crisis within the field. They suggest that the state of psychiatry today reflects Thomas Kuhn's conception of a period of extraordinary science, which occurs when anomalies begin to build up, confidence in the dominant paradigm is shook, competing theories arise, and philosophical questions come to the fore. Although perhaps not all would agree that (...) the field is in crisis, there is certainly an abundance of pessimism. Within the realm of research, a mood of explanatory pessimism has been growing, characterized by a... (shrink)

In a typical comparative clinical trial the randomization scheme is fixed at the beginning of the study, and maintained throughout the course of the trial. A number of researchers have championed a randomized trial design referred to as ‘outcome-adaptive randomization.’ In this type of trial, the likelihood of a patient being enrolled to a particular arm of the study increases or decreases as preliminary information becomes available suggesting that treatment may be superior or inferior. While the design merits of outcome-adaptive (...) trials have been debated, little attention has been paid to significant ethical concerns that arise in the conduct of such studies. These include loss of equipoise, lack of processes for adequate informed consent, and inequalities inherent in the research design which could lead to perceptions of injustice that may have negative implications for patients and the research enterprise. This article examines the ethical difficulties inherent in outcome-adaptive trials. (shrink)

The lantern exhibition at the Lantern Festival is an important traditional festival in Taiwan. Visitors play an important role in the promotion and sustainable development of intangible cultural heritage. In recent years, the involvement of digital technology in traditional lantern design and shows has contributed to the protection, inheritance, and promotion of ICH, there remains less research on using augmented reality with ICH tourism. In this study, AR is used for ICH lantern exhibition to discuss the learning experience in (...) lantern tourism and the relationship between technology acceptance and satisfaction from the perspective of visitors, as well as evaluate what AR has on improving visitors’ awareness and learning experience. Then, primary variables of the technology acceptance model are combined with generic learning outcomes to integrate ICH, education, and technology to expand TAM, building a new model to study the ICH learning experience. A questionnaire and observation are used. Respondents are visitors participating in the AR lantern exhibition in Taiwan, which is designed by the author. There is a total of 200 questionnaires collected in the end. The result shows that knowledge and understanding, attitudes and values, activity, behavior, and progression, and enjoyment, inspiration, and creativity from GLOs have a positive effect on technology acceptance and actual use. Therefore, visitors are satisfied with innovative and interesting technology learning experiences, enhancing learning interest and results. Besides, the interaction of the AR system improves visitors’ learning motivation, which shows the combination of AR technology with ICH tourism helps improve cultural awareness. (shrink)

Open peer commentary on the article “Developing a Dialogical Platform for Disseminating Research through Design” by Abigail C. Durrant, John Vines, Jayne Wallace & Joyce Yee. Upshot: The question of more appropriate dissemination formats for research through design is important, but secondary. Artefacts are just media in the knowledge-generating process. RTD is a much more powerful concept than presented here.

We are far too willing to reject the belief that much of what we see in life is random.Uncertainty is an everyday experience in medical research and practice, but theory and methods for reasoning clearly about uncertainty were developed only recently. Confirmation bias, selective memory, and many misleading heuristics are known enemies of the insightful clinician, researcher, or citizen, but other snares worth exposing may lurk in how we reason about uncertainty in our everyday lives. Here we draw attention (...) to a cognitive bias that is little known—or possibly unknown—to those outside the field of probability pedagogy. Described by Konold as the... (shrink)

Recruiting minorities into research studies requires special attention, particularly when studies involve “extra-vulnerable” participants with multiple vulnerabilities, e.g., pregnant women, the fetuses/neonates of ethnic minorities, children in refugee camps, or cross-border migrants. This study retrospectively analyzed submissions to the Ethics Committee of the Faculty of Tropical Medicine (FTM-EC) in Thailand. Issues related to the process and outcomes of proposal review, and the main issues for which clarification/revision were requested on studies, are discussed extensively.

The research ethics committee is a key element of university administration and has gained increasing importance as a review mechanism for those institutions that wish to conduct responsible...

BackgroundPublication and outcome reporting bias is often caused by researchers selectively choosing which scientific results and outcomes to publish. This behaviour is ethically significant as it distorts the literature used for future scientific or clinical decision-making. This study investigates the practicalities of using ethics applications submitted to a UK National Health Service research ethics committee to monitor both types of reporting bias.MethodsAs part of an internal audit we accessed research ethics database records for studies submitting an end (...) of study declaration to the Hampshire A research ethics committee between 1st January 2010 and 31st December 2011. A literature search was used to establish the publication status of studies. Primary and secondary outcomes stated in application forms were compared with outcomes reported in publications.ResultsOut of 116 studies the literature search identified 57 publications for 37 studies giving a publication rate of 32 %. Original Research Ethics Committee applications could be obtained for 28 of the published studies. Outcome inconsistencies were found in 16 of the published studies.ConclusionsThis study showed that the problem of publication and outcome reporting bias is still significant in the UK. The method described here demonstrates that UK NHS research ethics committees are in a good position to detect such bias due to their unique access to original research protocols. Data gathered in this way could be used by the Health Research Authority to encourage higher levels of transparency in UK research. (shrink)

U.S. federal research funding is generally justified by promises of public benefits, but the specific natures and distribution of such benefits often remain vague and ambiguous. Furthermore, the metrics by which outcomes are reported often do not necessarily or strongly imply the achievement of public benefits. These ambiguities and discontinuities make it difficult to assess the public outcomes of federal research programs. This study maps the terms in which the purposes and the outcomes of Advanced (...) Research Projects Agency-Energy -a relatively young and innovatively structured federal research agency-have been discussed and reported. I find that ARPA-E’s creation and funding have been justified with reference to a broad repertoire of economic, environmental, and national security values, but that the agency has been evaluated only through intermediate scientific and economic metrics and study of internal organizational structure. I suggest that these means of assessment elide ARPA-E’s lack of the financial scale, long time horizon, built-in customer, and radical vision which have been historically important to high-impact federal innovation, and I recommend the tracking of metrics more directly related to ARPA-E’s public value purposes as the agency grows older. This discussion illustrates the inadequacy of currently widespread metrics and conventional wisdom for the design and assessment of societally relevant research. (shrink)

As a legal aid union president in New Haven, laboring within shouting distance of a different large research university, I recall how our membership rolled our eyes when Professors Greiner, Pattanayak, and Hennesy of Harvard published their study providing evidence, through a randomized control trial, that law clinic housing work made no difference for clients.1 Representing, as I was, “lawyers, secretaries, and paralegals who have dedicated their careers to serving poor clients in crisis,”2 the authors’ conclusion generated first shock, (...) then denial, and then an anxious realization that somebody’s job was to research and disseminate such conclusions. In a 2013 United States where there was one legal aid lawyer for every 8,893 people who qualified,3 where federal Legal Services Corporation funding had dropped 40% over ten years in real dollars,4 and in an America that spends as much on Halloween costumes for its pets as it does legal aid for the poor,5 the inquiry felt like a pile-on. It made no more sense to us than asking if a teacher is “good for students,” a nurse “good for the sick,” or a chef “good for the hungry.”6. (shrink)

The responsible research and innovation framework seeks to bring science closer to society, with scientific research conducted not just for the benefit of society, but with role players in society engaging with scientists on research and innovation at every stage. A central focus of the RRI framework is the approach taken to embed these concepts in the higher education training of science students. In this study the direct engagement between science students and the public is explored as (...) an opportunity for achieving RRI learning outcomes. The study also explores the potential benefits that such direct engagement with the public holds for postgraduate biotechnology students. The case study described here suggests that even brief interactions with the public through science engagement activities such as “Speed-Date-a-Scientist” can contribute towards affirmation of choice of career, students’ motivation as researchers and shaping of their identity as scientists, important processes in their own learning to become scientists. Students also indicated a greater sense of motivation to do research that benefits the public, resonating with RRI learning outcomes. (shrink)

Quantitative research studies examining the effects of literacy instruction set in social studies classrooms (grades 6-12) on students’ academic content learning and reading comprehension are synthesized using meta-analytic techniques. An extensive search of the scholarly literature between 1983 and 2013 yielded a total of twelve intervention studies that provided literacy instruction to secondary students within social studies classes and quantitatively measured content learning outcomes, reading comprehension, or both. Findings revealed that content learning outcomes were consistently improved with (...) instruction that included text-processing activities such as summarizing and generating questions. While many social studies teachers do not provide explicit reading supports, in part because they perceive that the time needed to do so is prohibitive, the findings of this synthesis suggest that sound reading practices hold promise as a means through which teachers can help students better access social studies content, thus improving student learning outcomes. More rigorous quantitative research is needed to further understand the causal effects of literacy practices in social studies settings. Highlights • Literacy instruction supports both reading comprehension and academic content • Literacy instruction does not negatively affect content knowledge acquisition. • Few studies investigate the effects of literacy instruction in social studies. • More research is needed to explore the effects of literacy instruction in social studies. (shrink)

BackgroundThere is a lack of empirical research regarding the outcomes of such clinical ethics support methods as moral case deliberation. Empirical research in how healthcare professionals perceive potential outcomes is needed in order to evaluate the value and effectiveness of ethics support; and help to design future outcomes research. The aim was to use the European Moral Case Deliberation Outcome Instrument instrument to examine the importance of various MCD outcomes, according to healthcare professionals, (...) prior to participation.MethodsA North European field survey among healthcare professionals drawn from 73 workplaces in a variety of healthcare settings in the Netherlands, Norway and Sweden. The Euro-MCD instrument was used.ResultsAll outcomes regarding the domains of moral reflexivity, moral attitude, emotional support, collaboration, impact at organisational level and concrete results, were perceived as very or quite important by 76%–97% of the 703 respondents. Outcomes regarding collaboration and concrete results were perceived as most important. Outcomes assessed as least important were mostly about moral attitude. ‘Better interactions with patient/family’ emerged as a new domain from the qualitative analysis. Dutch respondents perceived most of the outcomes as significantly less important than the Scandinavians, especially regarding emotional support. Furthermore, men, those who were younger, and physician-respondents scored most of the outcomes as statistically significantly less important compared with the other respondents.ConclusionsThe findings indicate a need for a broad instrument such as the Euro-MCD. Outcomes related to better interactions between professionals and patients must also be included in the future. The empirical findings raise the normative question of whether outcomes that were perceived as less important, such as moral reflexivity and moral attitude outcomes, should still be included. In the future, a combination of empirical findings and normative reflection will contribute to the revision of the instrument. (shrink)

BackgroundCountries are increasingly devoting significant resources to creating or strengthening research ethics committees, but there has been insufficient attention to assessing whether these committees are actually improving the protection of human research participants.DiscussionResearch ethics committees face numerous obstacles to achieving their goal of improving research participant protection. These include the inherently amorphous nature of ethics review, the tendency of regulatory systems to encourage a focus on form over substance, financial and resource constraints, and conflicts of interest. Auditing (...) and accreditation programs can improve the quality of ethics review by encouraging the development of standardized policies and procedures, promoting a common base of knowledge, and enhancing the status of research ethics committees within their own institutions. However, these mechanisms focus largely on questions of structure and process and are therefore incapable of answering many critical questions about ethics committees' actual impact on research practices.The first step in determining whether research ethics committees are achieving their intended function is to identify what prospective research participants and their communities hope to get out of the ethics review process. Answers to this question can help guide the development of effective outcomes assessment measures. It is also important to determine whether research ethics committees' guidance to investigators is actually being followed. Finally, the information developed through outcomes assessment must be disseminated to key decision-makers and incorporated into practice. This article offers concrete suggestions for achieving these goals.ConclusionOutcomes assessment of research ethics committees should address the following questions: First, does research ethics committee review improve participants' understanding of the risks and potential benefits of studies? Second, does the process affect prospective participants' decisions about whether to participate in research? Third, does it change participants' subjective experiences in studies or their attitudes about research? Fourth, does it reduce the riskiness of research? Fifth, does it result in more research responsive to the local community's self-identified needs? Sixth, is research ethics committees' guidance to researchers actually being followed? (shrink)

Increasing the ethicality of a project and the usefulness of the data enhances the probability that social good will result from the research; a combination of ethical and methodological soundness is therefore crucial. From 1999‐2002 I conducted a qualitative study of women’s, men’s, and mixed Internet chat room conversations. In this article, I discuss the particular ethical issues that arose, outlining my ethical decision‐making process within the context of current debates. I also describe the methodological concerns, demonstrating why a (...) synthesized method responsive to the advantages and disadvantages of cyberspace was necessary, and how the data were enhanced by this choice of method and by certain characteristics of cyberspace. In discussing the details of my study, my overall goal is to provide an assessment of the social good of the project with a view to increasing the probability of more ethical and useful Internet‐based research outcomes more generally. (shrink)

Our article is based on a study of our integration of social foundations coursework with filmmaking and participatory action research, bringing teacher candidates and middle and high school students together. The project was carried out in partnership between an urban university and two nearby public schools within a Midwestern city known for high child poverty rates and weak academic outcomes. The project sought to stretch the imagination of teacher candidates in areas related to school reform and to provide (...) opportunities for the youth in terms of inquiry and activism concerning their schools and neighborhoods. The article discusses the direction of the project over the semester and the challenges encountered in carrying out this work. Study findings suggest that the students valued the use of film and learning of research skills, as well as the coming together each week. Technology glitches precluded a final film product, compromising the extent to which project goals concerning activism in the area of educational and public policy were achieved. The study serves as careful reminder of the challenges in carrying out PAR and the need to frequently revisit questions about project intentions and direction. (shrink)

For decades, the dominant research paradigm has included trials conducted in clinical settings with little involvement from communities. The move toward community engaged research (CEnR) necessitates the inclusion of diverse perspectives to address complex problems. Using a relationship paradigm, CEnR reframes the context, considerations, practical steps, and outcomes of research.

For decades, the dominant research paradigm has included trials conducted in clinical settings with little involvement from communities. However, concerns about the relevance and applicability of the processes or outcomes of such research have led to calls for greater community engagement in the research process. As such, there has been a shift in emphasis from simply recruiting research participants from community settings to engaging community members more broadly in all aspects of the research process. (...) The move toward community engaged research is in part driven by the recognition that inclusion of diverse perspectives in multidisciplinary teams is essential to addressing complex problems. Investigators have come to recognize the inherent value of engaging community members as collaborators in multidisciplinary teams that are conducting research on issues of concern to communities. The insider perspective from community members is now recognized as essential in designing effective and well-received recruitment strategies, culturally appropriate measures, and identifying meaningful and broad-reaching venues for dissemination. (shrink)

This text presents an overview of the bioethical debate on pediatric cochlear implants and pays particular attention to the analysis of the Deaf critique of implantation. It dismisses the idea that Deaf concerns are primarily about the upholding of Deaf culture and sign language. Instead it is argued that Deaf skepticism about child rehabilitation after cochlear surgery is well founded. Many Deaf people have lived experiences as subjects undergoing rehabilitation. It is not the cochlear technology in itself they view as (...) problematic, but rather the subsequent rehabilitation process. Because they themselves have experienced what they describe as harmful effects which relate above all to the idea of normalization, they have articulated worries for the new generations of deaf children in need of rehabilitation following cochlear implant surgery. These insights have attracted little attention, but could represent relevant ethical questions of which both practitioners and researchers in the field of implantation might be aware. (shrink)