Correction: The views, perspectives, and experiences of academic researchers with data sharing and reuse: A meta-synthesis.
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ABSTRACT:
SUBMITTER: PLOS ONE Staff
PROVIDER: S-EPMC7266347 | biostudies-literature | 2020
REPOSITORIES: biostudies-literature
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Correction: The views, perspectives, and experiences of academic researchers with data sharing and reuse: A meta-synthesis.
PloS one 20200602 6
[This corrects the article DOI: 10.1371/journal.pone.0229182.]. ...[more]
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Project description:BackgroundFunding agencies and research journals are increasingly demanding that researchers share their data in public repositories. Despite these requirements, researchers still withhold data, refuse to share, and deposit data that lacks annotation. We conducted a meta-synthesis to examine the views, perspectives, and experiences of academic researchers on data sharing and reuse of research data.MethodsWe searched the published and unpublished literature for studies on data sharing by researchers in academic institutions. Two independent reviewers screened citations and abstracts, then full-text articles. Data abstraction was performed independently by two investigators. The abstracted data was read and reread in order to generate codes. Key concepts were identified and thematic analysis was used for data synthesis.ResultsWe reviewed 2005 records and included 45 studies along with 3 companion reports. The studies were published between 2003 and 2018 and most were conducted in North America (60%) or Europe (17%). The four major themes that emerged were data integrity, responsible conduct of research, feasibility of sharing data, and value of sharing data. Researchers lack time, resources, and skills to effectively share their data in public repositories. Data quality is affected by this, along with subjective decisions around what is considered to be worth sharing. Deficits in infrastructure also impede the availability of research data. Incentives for sharing data are lacking.ConclusionResearchers lack skills to share data in a manner that is efficient and effective. Improved infrastructure support would allow them to make data available quickly and seamlessly. The lack of incentives for sharing research data with regards to academic appointment, promotion, recognition, and rewards need to be addressed.
| S-EPMC7046208 | biostudies-literature
Project description:This research aimed to understand the needs and habits of researchers in relation to code sharing and reuse; gather feedback on prototype code notebooks created by NeuroLibre; and help determine strategies that publishers could use to increase code sharing. We surveyed 188 researchers in computational biology. Respondents were asked about how often and why they look at code, which methods of accessing code they find useful and why, what aspects of code sharing are important to them, and how satisfied they are with their ability to complete these tasks. Respondents were asked to look at a prototype code notebook and give feedback on its features. Respondents were also asked how much time they spent preparing code and if they would be willing to increase this to use a code sharing tool, such as a notebook. As a reader of research articles the most common reason (70%) for looking at code was to gain a better understanding of the article. The most commonly encountered method for code sharing-linking articles to a code repository-was also the most useful method of accessing code from the reader's perspective. As authors, the respondents were largely satisfied with their ability to carry out tasks related to code sharing. The most important of these tasks were ensuring that the code was running in the correct environment, and sharing code with good documentation. The average researcher, according to our results, is unwilling to incur additional costs (in time, effort or expenditure) that are currently needed to use code sharing tools alongside a publication. We infer this means we need different models for funding and producing interactive or executable research outputs if they are to reach a large number of researchers. For the purpose of increasing the amount of code shared by authors, PLOS Computational Biology is, as a result, focusing on policy rather than tools.
| S-EPMC9406794 | biostudies-literature
Project description:BackgroundRaising awareness of the importance of fetal movements (FMs) and advising women on the appropriate action to take if they experience reduced FMs, is important for minimising or avoiding adverse perinatal outcomes. To gain insight and understanding of women's perspectives of assessing FMs in pregnancy, we conducted a qualitative evidence synthesis.MethodsA qualitative evidence synthesis using thematic synthesis was conducted. Studies were eligible if they included pregnant women who were at least 20 weeks gestation and reported qualitative data from women on assessing FMs in pregnancy. MEDLINE, CINAHL, EMBASE, PsycINFO and Social Science Citation Index, from inception to July 2020, were searched. The methodological quality of included studies was assessed by at least two reviewers using an Evidence for Policy and Practice Information (EPPI)-Centre quality assessment tool. Data synthesis, using the Thomas and Harden framework, involved line by line coding of extracted data, establishing descriptive themes, and determining analytical themes. Confidence in the findings was assessed using GRADE CER-Qual.ResultsNine studies, involving 2193 women, were included in the review. The methodological quality of the studies was overall generally high. The synthesis revealed three dominant themes, and seven sub-themes that reflected women's perspectives of assessing FMs in pregnancy. These were; 1) How women engage with FMs, with subthemes of informal engagement, formal engagement, and strategies to stimulate FMs; 2) ' … like a feather inside my belly' - articulating and describing FMs, with sub-themes of sensations associated with FMs and timing and frequency of FMs; and 3) FMs and help/health seeking, with sub-themes of information sources and interacting with healthcare professionals. Confidence in the findings was either high or moderate, although two findings were rated low confidence and one very low.ConclusionThis qualitative evidence synthesis reveals that women informally engage with FMs during pregnancy. Women commonly adopt strategies to stimulate FMs when concerned. The use of the internet was a common source of obtaining information regarding FMs. Women require better support when contacting healthcare professionals about FMs. As only three of the nine included studies were exclusively qualitative in design, further qualitative studies exploring women's perspective of assessing FMs in pregnancy are required.
| S-EPMC7944914 | biostudies-literature
Project description:IntroductionAlthough there have been qualitative meta-syntheses on experiences of eating disorders treatments, there is a paucity of syntheses specifically examining the perspectives and experiences of eating disorders treatments (ED) in East Asia (EA). Such synthesis could facilitate a better understanding of culture-specific perspectives and experiences. This review complements a quantitative scoping review published on ED treatments in EA (Yim & Schmidt, 2023), where most interventions reviewed focused on cognitive behavioural therapy (CBT) and internet interventions. The present meta-synthesis summarises stakeholders' views on treatments and to synthesise clinical and research recommendations.MethodA systematic search of five databases and a citation search were conducted to identify relevant studies and data were analysed using thematic synthesis. Out of the 301 studies found, a total of 12 papers were included in the analysis.ResultsA diverse range of treatments, such as family therapy, paediatric/psychiatric inpatient care, CBT, and counselling, were discussed. Three overarching themes were identified: Delineating Physical and Psychological Recovery; 'I am not alone in this battle'; and Barriers to Change. The themes further delve into the various obstacles to recovery, including financial concerns and limited access to professionals and services. Culture-specific factors include family obligations and promoting family harmony. Balancing interdependence and independence from one's family, as well as understanding family body ideals versus broader societal body ideals, are important considerations in ED interventions.DiscussionSome themes paralleled other qualitative syntheses, highlighting improved family relationships, perceived authoritarianism in treatments, and financial barriers. The review extends beyond the previous findings, revealing nuanced factors like family roles, cultural values, and norms. Clinical recommendations include incorporating family context in treatment and considering cultural influences on body image ideals. Capacity building through telemedicine and increased training is essential for advancing ED treatment in East Asia. Continued research is needed to better understand and treat people affected by ED in EA.
| S-EPMC11334303 | biostudies-literature
Project description:ObjectivesTo review and appraise the existing qualitative studies on Ramadan fasting in participants with diabetes and to integrate valuable qualitative evidence for optimizing diabetes management.MethodsTwelve databases (PubMed, Embase, Cochrane Library, Science Direct, CINAHL, PsycINFO, JBI (Joanna Briggs institute), Web of Science, and four Chinese databases) were searched to identify qualitative studies on experiences and perspectives of Ramadan fasting in participants with diabetes. CASP (Critical Appraisal Skills Program) Qualitative Checklists were applied to appraise the included studies. A meta-synthesis approach was used to analyze the included studies. Through the strategy of inductive thematic synthesis and reciprocal interpretation, the findings and quotations of the included studies were integrated into new themes and categories. The CERQual (Confidence in the Evidence from Reviews of Qualitative Research) tool was used to grade the confidence of the new themes.ResultsA total of 11 qualitative studies were included, and 43 findings were isolated. Ten new themes were identified and synthesized from the findings. Finally, four new categories were integrated, including the knowledge and understanding of observing Ramadan fasting, well-being and challenges, self-efficacy, and needs and expectations of participants with diabetes during Ramadan.ConclusionsInsulin-dependent individuals call for special concern during Ramadan fasting. Ramadan-focused education needs to be developed and generalized, and existing guidelines should be improved to optimize the management of diabetes. Professional HCPs contribute to weigh the health risks and mental satisfaction for their patients, partly, to balance health and religion. Participants' psychological construction is another concern for religious scholars and psychologists.
| S-EPMC7682869 | biostudies-literature
Project description:Data-sharing helps advance scientific research and assures the benefits of research data are maximized. Previous work has highlighted ethical challenges, especially in low- and middle-income countrie (LMIC) countries. This study examined the views of researchers in a middle-income country, Thailand, regarding the most important data-sharing challenges. The target researchers worked in biomedical and related research. The survey was distributed to 38 academic and health-science institutes, 18 university hospitals, 84 nonuniversity hospitals, and 22 research institutes across Thailand; 229 researchers in clinical/basic and social/behavioral sciences, and pubxxlic health/policy participated. Thai researchers were less concerned with informed consent and the feasibility of conducting research and sharing data, focusing on the importance of safeguards when handling data, including transfer to others, and possible lack of control over subsequent data use. The respondents felt that researchers should decide what types of project data are shareable and which data are likely useful to the scientific community. They were more concerned with appropriate acknowledgment and protecting the legal rights of the primary data collectors and providers. Although they had concerns about data access conditions, they rated sharing sufficient data and metadata to reproduce the analysis of the primary outcomes as highly important. These results are important for future efforts of the LMIC countries to develop efficient data-sharing frameworks and establish institutional data access committees. They highlight the importance, for the sustainability and fairness of these efforts, to ensure that parties in LMIC countries receive appropriate credit and are involved in determining where/when/how their data may be used.
| S-EPMC7356467 | biostudies-literature
Project description:Numerous ethical, legal, and social issues arise with biological sample sharing. The study explored the perspectives of genetic and genomic researchers on the sharing of biological samples in international collaborative research. Qualitative in-depth interviews were conducted with 15 researchers. Participants expressed positive attitudes towards biobanking and appreciated the benefits of cross-border sharing of biological samples but noted that this practice had adversely affected local capacity building efforts. There was limited understanding of the ethical and regulatory frameworks governing sample sharing. Researchers emphasized the importance of respecting cultural values in biobanking research. Issues concerning poor governance and inequitable benefit sharing were also raised. There is a need for fair and equitable international collaborations where all researchers are treated with respect and as equal partners.
| S-EPMC10330227 | biostudies-literature
Project description:BACKGROUND:Globally, over 33 million people have atrial fibrillation (AF). In eligible patients, oral anticoagulation (OAC) is recommended for stroke risk reduction. Despite recent increases in OAC prescribing, global under-prescription to high-risk AF patients and inappropriate prescription to low-risk patients is leading to unnecessary risk of stroke and haemorrhage. This meta-synthesis explored clinicians' beliefs and experiences regarding OAC prescription to AF patients, highlighting barriers to stroke prevention and informing future clinician-focused interventions. METHODS AND RESULTS:A qualitative meta-synthesis exploring clinicians' views and experiences of prescribing OACs for stroke prevention in AF patients. Databases including MEDLINE, EMBASE, PsychINFO and CINAHL were searched to June 2018, with a further Medline search to February 2020. Thematic synthesis was performed with data coding, descriptive theme categorisation and generation of analytical themes. From 3499 records, 101 full text papers were screened, with 13 eligible studies identified. Four analytical themes were found to affect clinicians' prescribing: (i) 'Clinicians' intellectual and emotional responses to the evidence'; (ii) 'Prescribing in primary and secondary care'; (iii) 'Clinicians' views of how patients' characteristics and opinions influence prescribing'; and (iv) 'Clinicians' views on their interactions with patients'. CONCLUSIONS:This review highlights focal points for future clinician-focused interventions to improve guideline-adherent OAC prescription in AF patients. Interventions should aim to improve clinicians' knowledge around NOAC prescription and stroke and haemorrhage risk assessment tools as well as their emotional responses to difficult prescribing scenarios. Multidisciplinary interventions promoting cohesive care and input from different clinicians to overcome time-related barriers may increase guideline-adherent OAC prescription for AF patients.
| S-EPMC7205240 | biostudies-literature
Project description:BackgroundThere is a plethora of unanswered ethical questions about sharing incidental findings in genetics and genomics research. Yet understanding and addressing such issues is necessary for communicating incidental findings with participants. We explored researchers' perspectives and experiences regarding feedback of incidental genomics findings to participants.MethodsThis was a qualitative study using semi-structured interview schedules for In-depth interviews. Thirty respondents were purposively selected based on role as genetics and genomics researchers in Uganda. Data were analysed through content analysis to identify emerging themes using a comprehensive thematic matrix. QSR International NVivo software was used to support data analysis.Resultsa). On perceptions, sharing of incidental findings was acceptable and four themes emerged including role of professional judgement; role of ethics committees and ethical guidelines; optimal disclosure practices; limits to professional duty and uncertainty and; b). on practices, sharing had been carried out by some researchers and a theme on experience and practices emerged.ConclusionFeedback of incidental genomics research findings to participants is generally acceptable to researchers. Some researchers. Challenges include lack of ethical guidelines and uncertainty about the findings.
| S-EPMC9423610 | biostudies-literature
Project description:BackgroundInfrastructures are being developed to enhance and facilitate the sharing of cohort data internationally. However, empirical studies show that many barriers impede sharing data broadly.PurposeTherefore, our aim is to describe the barriers and concerns for the sharing of cohort data, and the implications for data sharing platforms.MethodsSeventeen participants involved in developing data sharing platforms or tied to cohorts that are to be submitted to platforms were recruited for semi-structured interviews to share views and experiences regarding data sharing.ResultsCredit and recognition, the potential misuse of data, loss of control, lack of resources, socio-cultural factors and ethical and legal barriers are elements that influence decisions on data sharing. Core values underlying these reasons are equality, reciprocity, trust, transparency, gratification and beneficence.ConclusionsData generators might use data sharing platforms primarily for collaborative modes of working and network building. Data generators might be unwilling to contribute and share for non-collaborative work, or if no financial resources are provided for sharing data.
| S-EPMC8253381 | biostudies-literature