93 research outputs found
A decade of empirical research on research integrity: what have we (not) looked at?
No full textResearch on research integrity has become a field of its own; yet, a comprehensive overview the field is still missing. We systematically
searched SCOPUS, Web of Science, and PubMed for relevant articles published between 2005 and 2015. We extracted the topic,
methodology, focus, and citations from each articles. From the 986 articles included, only 342 report empirical data. Empirical
papers predominantly targeted researchers and students. Although empirical articles questioning causes for misconduct mostly
blamed research systems (e.g., pressure, competition) for detrimental research practices, articles proposing approaches to
foster integrity focused on researchers’ awareness and compliance rather than on system changes. Involving nonresearchers and
reconnecting what is known to what is proposed may help research on research integrity move forwardThe author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The project is funded by internal funding from Hasselt University through the Bijzonder Onderzoeksfonds (BOF), grant number 15NI05. NAB has received an award with financial reward from the World Conference on Research Integrity (WCRI) at the Fifth WCRI in 2017 for the present work.
The authors would like to thank professor Raymond De Vries for his help in revising the manuscript. They would also like to thank the organisers of the Doctoral Forum of the 5th World Conference of Research Integrity (Nicholas H. Steneck, Elizabeth Heitman, and Nils Holger Axelsen) as well as its participants for their comments and recommendations regarding this work. Finally, the authors would like to thank the peer-reviewers from PLOS One and Science and Engineering Ethics for their useful comments which helped improve earlier version of our manuscript
Measuring states of pathological (un)consciousness: research dimensions, clinical applications, and ethics
No full textpeer reviewedConsciousness is a multidimensional construct with no widely accepted definition. Especially in pathological conditions, it is less clear what exactly is meant by (un)consciousness, how it can be reliably observed or measured. Here, we aim at (i) bringing together state of the art approaches to classification of single patients suffering from disorders of consciousness by means of motor-independent assessment of consciousness states with electrophysiology and functional neuroimaging, (ii) showing how each proposed metric translates into clinical practice and (iii) raising a discussion on the ethical aspects of consciousness measurements.We realize that when dealing with patients some issues commonly pertain to each method- ology discussed here, such as the overall clinical condition, clinical heterogeneity, and diagnostic uncertainty. When pre- dicting patients’ diagnosis, though, each method adopts a different approach to determine (a) a “gold standard” of the benchmark population upon which the metric is computed and (b) the generalization and replicability in the attempt to avoid overfitting. From an applied ethics perspective, the focus is, hence, on knowing what one is measuring and on the validity of measurements.We conclude that, when searching for consciousness in pathological conditions, confident diag- nosis can be based on the use of probabilistic predictions as well as on accumulative evidence stemming from multiple non-overlapping assessments with different modalities. A framework which will regulate the application order of these techniques (balancing their availability, sensitivity, and specificity, based on underlying clinical assumptions about a patient’s conscious state), is expected to ameliorate clinical management and further inform on the critical patterns of (un)consciousness
Neuroblastoma: The basis for cure in limited‐resource settings
No full textBackground Neuroblastoma (NB) contributes the most to the mortality of childhood malignancies worldwide. The disease spectrum is heterogenous and the management complex and costly, especially in advanced disease or disease with adverse biology. In low- and middle-income countries (LMICs) the majority of NB presents in advanced stages. Therefore, with limited resources and poor prognosis the treatment of NB is often not a priority. The aim of the study was to evaluate the research activities and perceptions of the management of NB that determine the research and treatment approaches in LMICs. Methods Data were sourced from identifying NB trials open to LMIC. s on NB research presented at the International Society for Paediatric Oncology (SIOP) Congresses between 2014 and 2020 were evaluated according to income status. An online survey evaluating medical views on NB in LMICs and the effect on the management was conducted. Descriptive analysis was done. Where appropriate categorical association between covariates was assessed using the Pearson chi-square (chi(2)) test or Fishers exact test. Results There were 15/562 (2.7%) trials open to LMIC. Only six of 138 (4.3%) LMIC participated in NB trials. Of the 688 abstracts presented between 2014 and 2020 at the SIOP International Congress on NB as primary subject, 297 (42.7%) were from LMICs. Only two were from low-income countries (LICs). Sixty-one countries responded to the NB survey. Positive views towards NB management were present when treatment was based on a national protocol, the availability of trimodal or advanced treatment options were present, and when a balance of metastatic or local disease were treated. Conclusion Management of NB in LMICs should include increased advocacy and research as well as implementation of national management strategies.We appreciate the support offered by Profs Kate Matthey, Guillermo Chantada and Scott Howard on behalf of the Global Neuroblastoma Network, Profs Laila Heississen and Lorna Renner on behalf of SIOPAfrica, Dr Joyce Balagadde-Kambugu on behalf of POGEA in the distribution of the survey. Our gratitude extends to all the participants of the survey. Dr van Heerden, as staff member of the Department of Paediatric Haematology and Oncology, Antwerp University Hospital, University of Antwerp acknowledges theDepartment for Research Support as well as the vzw Kinderkankerfonds, Belgium for the initial research grants. We acknowledge the Spanish and French translation services done by Mr Jorge Luis Rentaria, Mr Steve Populaire and Mrs Gaelle DuFour.van Heerden, J (corresponding author), Stellenbosch Univ, Tygerberg Hosp, Dept Paediat & Child Hlth, Paediat Haematol & Oncol,Fac Med & Hlth Sci, Cape Town, South Africa.
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Advancing science or advancing careers? Researchers' opinions on success indicators
No full textThe way in which we assess researchers has been under the radar in the past few years. Critics argue that current research assessments focus on productivity and that they increase unhealthy pressures on scientists. Yet, the precise ways in which assessments should change is still open for debate. We circulated a survey with Flemish researchers to understand how they work, and how they would rate the relevance of specific indicators used in research assessments. We found that most researchers worked far beyond their expected working schedule. We also found that, although they spent most of their time doing research, respondents wished they could dedicate more time to it and spend less time writing grants and performing other activities such as administrative duties and meetings. When looking at success indicators, we found that indicators related to openness, transparency, quality, and innovation were perceived as highly important in advancing science, but as relatively overlooked in career advancement. Conversely, indicators which denoted of prestige and competition were generally rated as important to career advancement, but irrelevant or even detrimental in advancing science. Open comments from respondents further revealed that, although indicators which indicate openness, transparency, and quality (e.g., publishing open access, publishing negative findings, sharing data, etc.) should ultimately be valued more in research assessments, the resources and support currently in place were insufficient to allow researchers to endorse such practices. In other words, current research assessments are inadequate and ignore practices which are essential in contributing to the advancement of science. Yet, before we change the way in which researchers are being assessed, supporting infrastructures must be put in place to ensure that researchers are able to commit to the activities that may benefit the advancement of science.This work was supported by internal funding from Hasselt University Bijzonder Onderzoeksfonds (BOF), grant number 15NI05.The funders had no role in the study design, data collection and analysis, decision to publish, or preparation of the manuscript.Bonn, NA (corresponding author), Hasselt Univ, Healthcare & Ethics Res Grp, Fac Med & Life Sci, Hasselt, Belgium.
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The Impact of Incidental Findings Detected During Brain Imaging on Research Participants of the Rotterdam Study: An Interview Study
No full textThis interview study investigates the short- and long-term implications of incidental findings detected through brain imaging on research participants’ lives and their
surroundings. For this study, nine participants of the Rotterdam Scan Study with an
incidental finding were approached and interviewed. When examining research participants’
narratives on the impact of the disclosure of incidental findings, the authors identified five
sets of tensions with regard to motivations for and expectations of research participation,
preferences regarding disclosure, short- and long-term impacts and impacts on self and
others. The paper shows: (1) that the impact of incidental findings may be greater than
participants at first let on; (2) incidental findings can have significant effects on participants’
social environment; and (3) participants may not feel prepared for disclosure even if
incidental findings have been discussed during the informed consent process. The authors
call for investigators to be aware of research participants’ experiences and these short- and
long-term impacts when designing suitable courses of action for the detection and management of incidental findings in research settings
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