scholarly journals Standards for design and measurement would make clinical research reproducible and usable

2018 ◽  
Vol 115 (11) ◽  
pp. 2590-2594 ◽  
Author(s):  
Kay Dickersin ◽  
Evan Mayo-Wilson

We find standards useful in everyday life and in science, although we do not always follow them. Adopting new standards can be expensive, so there may be a strong incentive to maintain the status quo rather than adopt new standards. The scientific community has many standards encompassing both doing clinical research and reporting it, including standards for design and measurement. Although existing research standards have improved both research and its reporting, we need to unify existing standards and to fill the gaps between steps throughout the research process. Existing gaps include implementation of standards and links between standards for study registration (to know about all studies undertaken), study protocols (to identify the preplanned study design and methods), data collection (to assess outcomes that are important and comparable across studies), dissemination of findings (to know the results of previous studies), data sharing (to make best use of existing data), and evidence synthesis (to draw appropriate conclusions from the body of evidence). The scientific community must work together to harmonize existing standards, to ensure that standards are kept up to date, to check that standards are followed, and to develop standards where they are still needed. A unified system of standards will make our work more reproducible.

2020 ◽  
Author(s):  
Quang Ngoc Nguyen

Without a guideline or structure, conducting a literature review on a psychological construct might become a chaotic process . This canvas was built based on the author's experience in order to help psychological researchers classify, organize, and summarize the information relating to the psychological construct of interest into several essential aspects including definition, classification, measurement, sample, predictors and outcomes, mediators and moderators, interventions, and theories. For each aspect, there are some guiding questions which are expected to help researcher decice which information should be focused while examining scientific documents. The completely filled canvas should depict the status quo of the research on the psychological construct of interest, facilitating the research process.


Nuncius ◽  
2011 ◽  
Vol 26 (1) ◽  
pp. 21-49
Author(s):  
Dario De Santis

AbstractThe scientific debate which developed during the eighteenth century, proposed and diffused new theories on the generation not only within the scientific community. Microscopic investigation and various experimental campaigns fostered daring models attempting to unveil the natural phenomena from which life originates. Besides the famous scientific and philosophical works that marked the age, in the second part of the century two pamphlets appeared that well represent the importance of the querelle about embryological systems defining the concept of generation as a voyage within the human body. Lucina sine concubitu and Juno abortans, respectively published in England and in Germany between 1750 and 1760, narrate the odd and imaginary adventures of two doctors who are trying to interrupt and modify the embryos' journey towards the body of the mother.


2021 ◽  
pp. medhum-2019-011816
Author(s):  
Alice Malpass ◽  
Coreen Mcguire ◽  
Jane Macnaughton

Breathlessness is a sensation affecting those living with chronic respiratory disease, obesity, heart disease and anxiety disorders. The Multidimensional Dyspnoea Profile is a respiratory questionnaire which attempts to measure the incommunicable different sensory qualities (and emotional responses) of breathlessness. Drawing on sensorial anthropology we take as our object of study the process of turning sensations into symptoms. We consider how shared cultural templates of ‘what counts as a symptom’ evolve, mediate and feed into the process of bodily sensations becoming a symptom. Our contribution to the field of sensorial anthropology, as an interdisciplinary collaboration between history, anthropology and the medical humanities, is to provide a critique of how biomedicine and cultures of clinical research have measured the multidimensional sensorial aspects of breathlessness. Using cognitive interviews of respiratory questionnaires with participants from the Breathe Easy groups in the UK, we give examples of how the wording used to describe sensations is often at odds with the language those living with breathlessness understand or use. They struggle to comprehend and map their bodily experience of sensations associated with breathlessness to the words on the respiratory questionnaire. We reflect on the alignment between cognitive interviewing as a method and anthropology as a disciplinary approach. We argue biomedicine brings with it a set of cultural assumptions about what it means to measure (and know) the sensorial breathless body in the context of the respiratory clinic (clinical research). We suggest the mismatch between the descriptions (and confusion) of those responding to the respiratory questionnaire items and those selecting the vocabularies in designing it may be symptomatic of a type of historical testimonial epistemic injustice, founded on the prioritisation of clinical expertise over expertise by experience.


2021 ◽  
Vol 21 (11) ◽  
pp. 32-35
Author(s):  
Barbara E. Bierer ◽  
Ari Ne’eman ◽  
Willyanne DeCormier Plosky ◽  
David H. Strauss ◽  
Benjamin C. Silverman ◽  
...  

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Carly Drake ◽  
Scott K. Radford

Purpose This study aims to consider how research methodologies and methods can afford holistic inquiry into gendered embodied consumption. Noting the salience of gender in past and present discourse surrounding the body and building on poststructuralist feminist hermeneutic philosophy and practice, the authors introduce a novel methodological framework situated within three considerations borne of the current socio-cultural landscape: the politics of embodiment, embodied identity and intersectionality. Design/methodology/approach To assist scholars and practitioners in interpreting themes of gendered embodiment in textual data surrounding consumption topics, the authors orient the framework around three principles of listening, questioning and hospitality. This framework fosters embodied empathy by linking the researcher’s body to those of research participants. To illustrate the method, the authors interpret consumption narratives extracted from semi-structured interviews with 26 women-identified recreational runners on the topics of embodiment, sport and media. Findings The interpretations of gendered consumption narratives show that using the principles of listening, questioning and hospitality invites an understanding of consumers as multifaceted, contradictory and agentic. The authors argue that consumers’ everyday experiences are often simple and quiet but embedded in history wherein bodies are both biological and inescapably social. Originality/value The methodological framework allows both the researcher’s and research participants’ embodiment to play a role in the research process. It also illuminates the entanglement of embodiment and consumption in a fraught, politicized context. The authors show that by listening to consumers, questioning their narratives and traditional interpretations thereof and inviting consumers to feel comfortable and heard, researchers can see what other approaches may overlook.


2018 ◽  
Vol 14 (1) ◽  
pp. 33-48 ◽  
Author(s):  
Sanna-Maria Nurmi ◽  
Mari Kangasniemi ◽  
Arja Halkoaho ◽  
Anna-Maija Pietilä

With changes in clinical research practice, the importance of a study-subject’s privacy and the confidentiality of their personal data is growing. However, the body of research is fragmented, and a synthesis of work in this area is lacking. Accordingly, an integrative review was performed, guided by Whittemore and Knafl’s work. Data from PubMed, Scopus, and CINAHL searches from January 2012 to February 2017 were analyzed via the constant comparison method. From 16 empirical and theoretical studies, six topical aspects were identified: the evolving nature of health data in clinical research, sharing of health data, the challenges of anonymizing data, collaboration among stakeholders, the complexity of regulation, and ethics-related tension between social benefits and privacy. Study subjects’ privacy is an increasingly important ethics principle for clinical research, and privacy protection is rendered even more challenging by changing research practice.


Author(s):  
Kaja Scheliga ◽  
Sascha Friesike

Digital technologies carry the promise of transforming science and opening up the research process. We interviewed researchers from a variety of backgrounds about their attitudes towards and experiences with openness in their research practices. We observe a considerable discrepancy between the concept of open science and scholarly reality. While many researchers support open science in theory, the individual researcher is confronted with various difficulties when putting open science into practice. We analyse the major obstacles to open science and group them into two main categories: individual obstacles and systemic obstacles. We argue that the phenomenon of open science can be seen through the prism of a social dilemma: what is in the collective best interest of the scientific community is not necessarily in the best interest of the individual scientist. We discuss the possibilities of transferring theoretical solutions to social dilemma problems to the realm of open science.


Author(s):  
Fengyu Zhang ◽  
Claude Hughes

Transparency in reporting the results of clinical and preclinical research is critical for unbiased publications. Funding agencies, publishers, and regulators have the responsibility to advocate and implement reporting standards for rigorous design. While individual study protocols may have included these standards, the items reported in the respective publications have often been inconsistent or lack transparency. This editorial intends to provide some specific guidelines for reporting results of clinical research with standards required for rigorous study design. We recommend that reporting clinical research should include sufficient information on study design and analysis plan that contains data processing, quality assurance, and appropriate methods used for rigorous statistical analysis or modeling. Any discrepancy between publications and original study design should be disclosed and discussed. Additionally, recent advances in the analysis of outcome with repeated measurements and statistical modeling should be employed to obtain unbiased estimates. Finally, we briefly discuss some issues reporting real-world evidence in clinical research.


2017 ◽  
Vol 12 (1) ◽  
pp. 112 ◽  
Author(s):  
Melissa Goertzen

A Review of: Hobbs, K., & Klare, D. (2016). Are we there yet?: A longitudinal look at e-books through students’ eyes. Journal of Electronic Resources Librarianship, 28(1), 9-24. http://dx.doi.org/10.1080/1941126X.2016.1130451 Abstract Objective – To determine undergraduate students’ opinions of, use of, and facility with e-books. Design – A qualitative study that incorporated annual interview and usability sessions over a period of four years. The protocol was informed by interview techniques used in prior studies at Wesleyan University. To supplement the body of qualitative data, the 2014 Measuring Information Service Outcomes (MISO) survey was distributed; the researchers built five campus-specific e-book questions into the survey. Setting – A small university in the Northeastern United States of America. Subjects – 28 undergraduate students (7 per year) who attended summer session between the years of 2011-2014 recruited for interview and usability sessions; 700 full-time undergraduate students recruited for the 2014 MISO survey. Methods – The method was designed by a library consortium in the Northeastern United States of America. The study itself was conducted by two librarians based at the single university. To recruit students for interview and usability sessions, librarians sent invitations via email to a random list of students enrolled in the university’s summer sessions. Recruitment for the 2014 MISO survey was also conducted via email; the survey was sent to a stratified, random sample of undergraduate students in February 2014. Interview sessions were structured around five open-ended questions that examined students’ familiarity with e-books and whether the format supports academic work. These sessions were followed by the students’ evaluation of specific book titles available on MyiLibrary and ebrary, platforms accessible to all libraries in the CTW Consortium. Participants were asked to locate e-books on given topics, answer two research questions using preselected e-books, explain their research process using the above mentioned platforms, and comment on the overall usability experience. Instead of taking notes during interview and usability sessions, the researchers recorded interviews and captured screen activity. Following sessions, they watched recordings, took notes independently, and compared notes to ensure salient points were captured. Due to concerns that a small pool of interview and usability candidates might not capture the overall attitude of students towards e-books, the researchers distributed the 2014 MISO survey between the third and fourth interview years. Five additional campus-specific e-book questions were included. The final response rate was 33%. Main Results – The results of the interviews, usability studies, and MISO survey suggest that although students use print and electronic formats for complementary functions, 86% would still select print if they had to choose between the formats. Findings indicate that e-books promote discovery and convenient access to information, but print supports established and successful study habits, such as adding sticky notes to pages or creating annotations in margins. With that being said, most students do not attempt to locate one specific format over another. Rather, their two central concerns are that content is relevant to search terms and the full-text is readily available. Study findings also suggest that students approach content through the lens of a particular assignment. Regardless of format, they want to get in, locate specific information, and move on to the next source. Also, students want all sources – regardless of format – readily at hand and arranged in personal organization systems. PDF files were the preferred electronic format because they best support this research behaviour; content can be arranged in filing systems on personal devices or printed when necessary. Because of these research habits, digital rights management (DRM) restrictions created extreme frustration and were said to impede work. In some cases, students created workarounds for the purpose of accessing information in a usable form. This included visiting file sharing sites like Pirate Bay in order to locate DRM free content. Findings demonstrated a significant increase in student e-book use over the course of four years. However, this trend did not correspond to increased levels of sophistication in e-book use or facility with build-in functions on e-book platforms. The researchers discovered that students create workarounds instead of seeking out menu options that save time in the long run. This behaviour was consistent across the study group regardless of individual levels of experience working with e-books. Students commented that additional features slow down work rather than creating efficiency. For instance, when keyboard shortcuts used to copy and paste text did not function, students preferred to type out a passage rather than spend time searching for copy functions available on the e-book platform. Conclusion – Academic e-books continue to evolve in a fluid and dynamic environment. While the researchers saw improvements over the course of four years (e.g., fewer DRM restrictions) access barriers remain, such as required authentication to access platform content. They also identified areas where training sessions lead by librarians could demonstrate how e-books support student research and learning activities. The researchers also found that user experiences are local in nature and specific to campus cultures and expectations. They concluded that knowledge of local user communities should drive book format selection. Whenever possible, libraries should provide access to multiple formats to support a variety of learning needs and research behaviours.


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