ORCID Profile
0000-0003-3747-3306
Current Organisation
Geneva University
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Publisher: Frontiers Media SA
Date: 06-09-2023
Publisher: Springer Science and Business Media LLC
Date: 25-10-2023
Publisher: Springer Science and Business Media LLC
Date: 30-04-2021
DOI: 10.1186/S12910-021-00616-4
Abstract: Ethics review is the process of assessing the ethics of research involving humans. The Ethics Review Committee (ERC) is the key oversight mechanism designated to ensure ethics review. Whether or not this governance mechanism is still fit for purpose in the data-driven research context remains a debated issue among research ethics experts. In this article, we seek to address this issue in a twofold manner. First, we review the strengths and weaknesses of ERCs in ensuring ethical oversight. Second, we map these strengths and weaknesses onto specific challenges raised by big data research. We distinguish two categories of potential weakness. The first category concerns persistent weaknesses, i.e., those which are not specific to big data research, but may be exacerbated by it. The second category concerns novel weaknesses, i.e., those which are created by and inherent to big data projects. Within this second category, we further distinguish between purview weaknesses related to the ERC’s scope (e.g., how big data projects may evade ERC review) and functional weaknesses, related to the ERC’s way of operating. Based on this analysis, we propose reforms aimed at improving the oversight capacity of ERCs in the era of big data science. We believe the oversight mechanism could benefit from these reforms because they will help to overcome data-intensive research challenges and consequently benefit research at large.
Publisher: Research Square Platform LLC
Date: 29-09-2020
DOI: 10.21203/RS.3.RS-83211/V1
Abstract: BackgroundIn this article, we raise several questions regarding how people consider what they do or do not consent to and the reasons why. This article presents the findings of a citizen forum study conducted for the University of Geneva in partnership with the Geneva University Hospitals to explore the opinions and concerns of members of the public society regarding predictive oncology, genetic sequencing, and cancer. MethodsThis paper present the results of a citizen forum that included 73 participants. A research tool titled "the mechanics of consent" was design for this study. This tool is table designed to allow participants to reflect on social and research actors, types of data, and desired levels of control while sharing different types of data with different actors. Participants’ discussion that led to the completion of each table were audio-recorded, transcribed, and analyzed using thematic analysis. Results The results are a compilation of responses from the mechanics of consent tool ided into two sections the first quantitative results presenting of collective responses regarding attitudes to consent to donate their data by qualitative findings emerged from the discussion amongst participants. Discussion Choice and control of personal data is crucial for the public to be able to decide who and how to trust. Key information to be disclosed to potential research participants shall include information about potential risks and benefits who will be accessing and using their data as well as assurances that their choice will be respected. Furthermore, researchers ought to make sure they are trustworthy, meaning they are responsible to accept or refuse trust when it is misplaced or built upon unrealistic expectations. Finally, informed consent is one of the various elements that contribute to conducting ethical research, more needs to be done to strengthen governance and ensure adequate protection to research participants particularly to address issues related to predictive health analytics.
Publisher: Elsevier BV
Date: 02-2023
Publisher: Informa UK Limited
Date: 08-10-2021
Publisher: JMIR Publications Inc.
Date: 09-06-2022
DOI: 10.2196/32439
Abstract: Persons who are deaf are more likely to avoid health care providers than those who can hear, partially because of the lack of means of communication with these providers and the dearth of available interpreters. The use of video remote interpretation, namely the video camera on an electronic device, to connect deaf patients and health providers has rapidly expanded owing to its flexibility and advantageous cost compared with in-person sign language interpretation. Thus, we need to learn more about how this technology could effectively engage with and respond to the priorities of its users. We aimed to identify existing evidence regarding the use of video remote interpretation (VRI) in health care settings and to assess whether VRI technology can enable deaf users to overcome barriers to interpretation and improve communication outcomes between them and health care personnel. We conducted a search in 7 medical research databases (including MEDLINE, Web of Science, Embase, and Google Scholar) from 2006 including bibliographies and citations of relevant papers. The searches included articles in English, Spanish, and French. The eligibility criteria for study selection included original articles on the use of VRI for deaf or hard of hearing (DHH) sign language users for, or within, health care. From the original 176 articles identified, 120 were eliminated after reading the article title and abstract, and 41 articles were excluded after they were fully read. In total, 15 articles were included in this study: 4 studies were literature reviews, 4 were surveys, 3 were qualitative studies, and 1 was a mixed methods study that combined qualitative and quantitative data, 1 brief communication, 1 quality improvement report, and 1 secondary analysis. In this scoping review, we identified a knowledge gap regarding the quality of interpretation and training in sign language interpretation for health care. It also shows that this area is underresearched, and evidence is scant. All evidence came from high-income countries, which is particularly problematic given that most DHH persons live in low- and middle-income countries. Furthering our understanding of the use of VRI technology is pertinent and relevant. The available literature shows that VRI may enable deaf users to overcome interpretation barriers and can potentially improve communication outcomes between them and health personnel within health care services. For VRI to be acceptable, sign language users require a VRI system supported by devices with large screens and a reliable internet connection, as well as qualified interpreters trained on medical interpretation.
Publisher: Springer Science and Business Media LLC
Date: 18-05-2021
DOI: 10.1186/S12910-021-00633-3
Abstract: In this article, we address questions regarding how people consider what they do or do not consent to and the reasons why. This article presents the findings of a citizen forum study conducted by the University of Geneva in partnership with the Geneva University Hospitals to explore the opinions and concerns of members of the public regarding predictive oncology, genetic sequencing, and cancer. This paper presents the results of a citizen forum that included 73 participants. A research tool titled "the mechanics of consent" was designed for this study. This tool is a table encouraging participants to reflect on social and research actors, types of data, and desired levels of control while sharing different types of data with different actors. Participants’ discussion that led to the completion of each table were audio-recorded, transcribed, and analyzed using thematic analysis. The results are a compilation of responses from the mechanics of consent tool ided into two sections the first presents quantitative results of collective responses regarding attitudes to consent to donate their data. The second section present qualitative findings emerged from the discussion amongst participants. Choice and control of personal data is crucial for the public to be able to decide who and how to trust. Key information to be disclosed to potential research participants shall include information about potential risks and benefits who will be accessing and using their data as well as assurances that their choice will be respected. Furthermore, researchers ought to make sure they are trustworthy, by acting in a competent, reliable, and honest manner. Governance systems ought to be better equipped to address ethical issues raise by the growing presence of non-traditional research actors, consent of exchanges of data via digital devices and online activity such as social media and fairness of data trading. Finally, informed consent is one of the various elements that contribute to conducting ethical research. More needs to be done to strengthen governance and ensure adequate protection of research participants, particularly to address issues related to predictive health analytics.
Publisher: Informa UK Limited
Date: 20-10-2016
Publisher: The Pennsylvania State University Press
Date: 10-2018
DOI: 10.5325/ABORIGINAL.1.2.0269
Abstract: Multiple or aggravated forms of discrimination have not been properly dealt with in health systems. This article reports on the findings of three case studies conducted in Australia, Mexico, and New Zealand that look at the experiences of Indigenous persons with disabilities accessing health care. The findings show that health systems in these three countries have not sufficiently addressed barriers to health care arising from aggravated forms of discrimination, such as the intersection between disability and indigeneity. Findings reveal also how both interpersonal and systematic discrimination emerged from protocols and procedures that often had no discriminatory intent but had a disproportionately negative impact on populations such as Indigenous persons with disabilities. The article also offers recommendations on how to improve awareness and cultural competency to tackle discriminatory practices in order to improve health access and effective adherence of Indigenous peoples in health care settings.
Publisher: JMIR Publications Inc.
Date: 28-07-2021
Abstract: ersons who are deaf are more likely to avoid health care providers than those who can hear, partially because of the lack of means of communication with these providers and the dearth of available interpreters. The use of video remote interpretation, namely the video camera on an electronic device, to connect deaf patients and health providers has rapidly expanded owing to its flexibility and advantageous cost compared with in-person sign language interpretation. Thus, we need to learn more about how this technology could effectively engage with and respond to the priorities of its users. e aimed to identify existing evidence regarding the use of video remote interpretation (VRI) in health care settings and to assess whether VRI technology can enable deaf users to overcome barriers to interpretation and improve communication outcomes between them and health care personnel. e conducted a search in 7 medical research databases (including MEDLINE, Web of Science, Embase, and Google Scholar) from 2006 including bibliographies and citations of relevant papers. The searches included articles in English, Spanish, and French. The eligibility criteria for study selection included original articles on the use of VRI for deaf or hard of hearing (DHH) sign language users for, or within, health care. rom the original 176 articles identified, 120 were eliminated after reading the article title and abstract, and 41 articles were excluded after they were fully read. In total, 15 articles were included in this study: 4 studies were literature reviews, 4 were surveys, 3 were qualitative studies, and 1 was a mixed methods study that combined qualitative and quantitative data, 1 brief communication, 1 quality improvement report, and 1 secondary analysis. In this scoping review, we identified a knowledge gap regarding the quality of interpretation and training in sign language interpretation for health care. It also shows that this area is underresearched, and evidence is scant. All evidence came from high-income countries, which is particularly problematic given that most DHH persons live in low- and middle-income countries. urthering our understanding of the use of VRI technology is pertinent and relevant. The available literature shows that VRI may enable deaf users to overcome interpretation barriers and can potentially improve communication outcomes between them and health personnel within health care services. For VRI to be acceptable, sign language users require a VRI system supported by devices with large screens and a reliable internet connection, as well as qualified interpreters trained on medical interpretation.
Publisher: Springer Science and Business Media LLC
Date: 12-2019
DOI: 10.1186/S12960-019-0435-8
Abstract: This paper presents the results of a case study that analyses the critical factors that influence the implementation of professional health education via blended learning in Dadaab refugee c . It explores innovative solutions to the issues facing refugees looking for professional health training, namely the health workforce shortage and lack of training opportunities. It outlines social and political factors that impact professional health education for refugee youth. It outlines barriers and facilitators on the implementation of ‘Distance Basic Training of Healthcare Professionals’, a blended training course provided by the University of Geneva to junior health care personnel in Dadaab Refugee c . This case uses mixed methods. Descriptive statistics drawn from online surveys, learning analytics data, and exchanges on online forums and student chat groups are all used. Qualitative methods consist of two focus groups, comprising of all students ( n = 27) were convened, as well as, in idual semi-structured interviews with 14 of the 27 students three with managers from the health service who supervised enrolled students and two with senior managers who were responsible for staff and training decision-making. Qualitative data was transcribed, and thematic analyses were applied. The results demonstrate that barriers for the implementation of professional education in a refugee c emerged not only from the constraints on the environment, but also from barriers stemming from legislation and administrative procedures. Data suggested weaknesses on the education system could be addressed by providing students with extra-curricular support, information and communications technology (ICT) literacy, and promoting mechanisms for peer support while broadening entry requirements to increase the enrolment of female students. Finally, providing internationally credentialed courses and transferable skills enables professional pathways for refugee students. Blended learning enables the design and delivery of high-quality medical education that is sustainable and relevant in a particular environment, e.g. refugee c s. Furthermore, the research reveals that building education pathways could enhance numbers of health workers with the appropriate skillset to serve communities.
Publisher: Public Library of Science (PLoS)
Date: 14-10-2021
DOI: 10.1371/JOURNAL.PONE.0258575
Abstract: An estimated 1 billion people with disabilities live in low and middle income countries, a population that includes people with communication disabilities (PwCD). PwCD are a heterogenous group with a wide range of abilities who may be underrepresented in research due to the communication demands involved in research participation. A critical analysis of 145 studies from a previously published systematic review was undertaken with the aim of documenting the opportunities for direct participation of PwCD in research on poverty and disability in low- and middle- income countries. The key finding was the high risk of underrepresentation of PwCD in research on poverty and disability in LMICs, despite low rates of explicit exclusion (n = 8 5.5%). A total of 366 uses of data collection tools were analysed (255 unique tools). The majority of data collection tools had high communication demands (92.9%), including those measuring disability (88.6%) and those assessing poverty (100%). Only 22 studies (15.2%) specifically included PwCD. A subset of these studies (n = 14) presented disaggregated data in a way that allowed for analysis of outcomes for PwCD, suggesting a clear intersection between poverty and communication disability, with findings related to general poverty indicators, reduced access to education, low levels of employment, and additional expenditure. The findings suggest a systematic underrepresentation of PwCD in research on poverty and disability with substantial implications for future policy and program planning, directly affecting the availability and provision of services and resources for this population. A failure to provide adequate opportunity for participation of PwCD in research risks leaving those with communication disabilities behind in the pursuit of global poverty eradication.
Publisher: Elsevier BV
Date: 10-2023
Location: Switzerland
No related grants have been discovered for Minerva Rivas Velarde.