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:BACKGROUND:Funding 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. METHODS:We searched the published and unpublished literature for studies on data sharing by researchers in academic institutions.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. RESULTS:We 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. CONCLUSION:Researchers 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:BackgroundSharing and reuse biosamples can facilitate biomedical research. Little is known about researchers' perception and practice about sharing, reusing, and storing biosamples in Jordan. Therefore, the current study aimed to evaluate the practices of biomedical researchers in Jordan regarding biosamples management.MethodsThe study was cross-sectional and involved biomedical researchers from different parts of Jordan. A questionnaire was designed to achieve the aim of this study. The questionnaire was web-based and distributed via e-mails using Google forms.ResultsOpinions of Jordanian biomedical researchers from different academic ranks and institutional backgrounds were measured and recorded anonymously. The majority of the sample was males (57.9%), from public universities (64.3%), and (64.6%) were from health-related fields. About 82.9% of participants stored biosamples using codes, whereas the rest used the subject's name. Sharing of biosamples was commonly practiced by 61.7% of Jordanian researchers locally, while 47.2% of the Jordanian researchers shared biosamples overseas. The reuse of biosamples in other projects was reported to be 55.4%. The majority explained the possibility of reusing and sharing biosamples in the consent form (range: 53-58%). Sharing and reusing biosamples were associated with gender, the number of publications in peer-reviewed international journals, and academic rank (P<0.05).ConclusionSharing and reusing biosamples are common among Jordanian biomedical researchers. Therefore, ethically grounded biosamples sharing and reuse standards are essential for protecting human subjects' rights and privacy in Jordan.
| S-EPMC9049300 | 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:IntroductionPeople with disabilities are underrepresented in higher education, facing systematic obstacles such as inaccessible communication and physical environments and difficulties obtaining accommodations. This study aims to shed light on barriers to accessibility and disability inclusion in research institutions through confidential qualitative interviews with researchers with disabilities.MethodsWe recruited participants via virtual flyers. Eligibility criteria included working in the United States (U.S.) as researchers that had applied for grant funding (last five years), and self-identifying as having a disability. We offered participants (total n = 35) the option of either semi-structured one-on-one live or written interviews based on their preference. Two study team members analyzed written and live responses using thematic analysis to identify themes.ResultsThemes included identity/visibility, career trajectories, accessibility, accommodations, bias, representation, and inclusion. Some participants reported not disclosing their disabilities at work or during hiring processes due to fear of negative perceptions from peers or potential employers. Experiences around stigma and bias were noted both in professional relationships and when interacting with disability service offices, underscoring difficulties and delays in processes to secure accommodations. Respondents highlighted the lack of disability inclusion and low representation of people with disabilities in academia and elevated the importance of self-advocacy and of role models and mentors in shaping career pathways for future researchers with disabilities.ConclusionResearchers with disabilities encounter systematic barriers at academic institutions, and lack of acknowledgement and research on these experiences has held back institutional and policy changes. To reduce disparities for researchers with disabilities, academic leadership must allocate resources to address ableism, create more inclusive environments, and raise standards beyond compliance with the Americans with Disabilities Act.
| S-EPMC11326606 | 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:BackgroundThe impetus for policies promoting medical data sharing in China has gained significant traction. Nonetheless, the present legal and ethical framework governing the research use of medical data in China, is characterized by a more restrictive rather than permissive approach. The proportion of Chinese medical data being leveraged for scientific research still has room for improvement at present, indicating a significant untapped potential for advancing medical knowledge and improving healthcare outcomes. Building upon this research, we aim to delve deeper into the challenges researchers encounter in the sharing of medical data through focus group interviews.MethodsWe conducted two focus group interviews study with researchers representing diverse disciplines to explore their perspectives on 21 June 2021 and 28 July 2021. A total of seventeen researchers willingly participated in this study, representing various professional backgrounds. Similar codes were merged. Research team discussions were also utilized to select interviewees' statements that were regarded as typical or representative.ResultsThe respondents demonstrated a strong understanding that medical data should not be disseminated arbitrarily, recognizing the importance of sharing data in compliance with laws. Through the interview, we found that although respondents stressed the importance of careful consideration regarding if and when this information can be responsibly released, none of the respondents raised the issue of necessitating consent from data subjects for the research use of medical data. This observation sharply contrasts with the stringent separate consent provisions for secondary data use outlined in the PIPL.ConclusionsThe findings from the focus group studies shed light on researchers' barriers and ethical challenges towards medical data sharing for scientific research, highlighting their deep concern for data security and cautious approach to sharing. The key objectives aimed at facilitating and enabling the reuse of medical data encompass enhancing interoperability, harmonizing data standards, improving data quality, safeguarding privacy, ensuring informed consent, incentivizing patients, and establishing explicit regulations pertaining to data access and utilization.
| S-EPMC11566659 | 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:Results-sharing with participants or their communities after the completion of research is an essential element of ethical research. The main objective of this study was to identify and document current practice of trial result dissemination, to explore attitudes among trialists towards result dissemination and to better understand previous experiences and barriers to returning results to participants. This mixed-methods study used a sequential exploratory design with two phases: i) an initial qualitative phase to explore the topic and to inform the quantitative data collection, ii) a quantitative survey. Findings from the survey and interviews were triangulated and presented to a network of clinical malaria researchers for validation. A total of 11 semi-structured interviews (SSIs) were conducted using an interview guide. The quantitative survey had a response rate of 19.9% (42/211). Disseminating results to participants after clinical trials was deemed critical for ethical malaria related research, with 38.1% indicating it as extremely important and 45.2% rating it as mostly important. Most respondents referred to the dissemination of results to policymakers and wider stakeholders as important aspects of research translation. The practice of patient or community engagement was prioritized in the pre-trial period and during the trial for obvious instrumental goals of improving retention, coverage and adherence, but much less priority was given to the post-trial period. The main reason for poor dissemination practice was the notion that the time lag between study participation and the availability of results was too long (42.4%). Other reasons included the assumption that the community was not interested (36.4%), and financial restraints (9.1%). The rich qualitative data revealed detailed accounts of operational, cultural, educational and economic aspects that pose further barriers to results-sharing, including limited knowledge about best practice. Better planning which includes adequate financial resourcing is required for meaningful dissemination of results to study participants. Improved institutional guidance and more stringent requirements by funders could support researchers who are generally interested and willing to complete the process. Best practice methods to conduct such dissemination remains to be explored.
| S-EPMC10479888 | biostudies-literature