Did high frequency phone surveys during the COVID-19 pandemic include disability questions? An assessment of COVID-19 surveys from March 2020 to December 2022.

OBJECTIVES: In the midst of the pandemic, face-to-face data collection for national censuses and surveys was suspended due to limitations on mobility and social distancing, limiting the collection of already scarce disability data. Responses to these constraints were met with a surge of high-frequency phone surveys (HFPSs) that aimed to provide timely data for understanding the socioeconomic impacts of and responses to the pandemic. This paper provides an assessment of HFPS datasets and their inclusion of disability questions to evaluate the visibility of persons with disabilities during the COVID-19 pandemic. DESIGN: We collected HFPS questionnaires conducted globally from the onset of the pandemic emergency in March 2020 until December 2022 from various online survey repositories. Each HFPS questionnaire was searched using a set of keywords for inclusion of different types of disability questions. Results were recorded in an Excel review log, which was manually reviewed by two researchers. METHODS: The review of HFPS datasets involved two stages: (1) a main review of 294 HFPS dataset-waves and (2) a semiautomated review of the same dataset-waves using a search engine-powered questionnaire review tool developed by our team. The results from the main review were compared with those of a sensitivity analysis using and testing the tool as an alternative to manual search. RESULTS: Roughly half of HFPS datasets reviewed and 60% of the countries included in this study had some type of question on disability. While disability questions were not widely absent from HFPS datasets, only 3% of HFPS datasets included functional difficulty questions that meet international standards. The search engine-powered questionnaire review tool proved to be able to streamline the search process for future research on inclusive data. CONCLUSIONS: The dearth of functional difficulty questions and the Washington-Group Short Set in particular in HFPS has contributed to the relative invisibility of persons with disabilities during the pandemic emergency, the lingering effects of which could impede policy-making, monitoring and advocacy on behalf of persons with disabilities.

Consent as a compositional act - a framework that provides clarity for the retention and use of data.

BACKGROUND: Informed consent is one of the key principles of conducting research involving humans. When research participants give consent, they perform an act in which they utter, write or otherwise provide an authorisation to somebody to do something. This paper proposes a new understanding of the informed consent as a compositional act. This conceptualisation departs from a modular conceptualisation of informed consent procedures. METHODS: This paper is a conceptual analysis that explores what consent is and what it does or does not do. It presents a framework that explores the basic elements of consent and breaks it down into its component parts. It analyses the consent act by first identifying its basic elements, namely: a) data subjects or legal representative that provides the authorisation of consent; b) a specific thing that is being consented to; and c) specific agent(s) to whom the consent is given. RESULTS: This paper presents a framework that explores the basic elements of consent and breaks it down into its component parts. It goes beyond only providing choices to potential research participants; it explains the rationale of those choices or consenting acts that are taking place when speaking or writing an authorisation to do something to somebody. CONCLUSIONS: We argue that by clearly differentiating the goals, the procedures of implementation, and what is being done or undone when one consent, one can better face the challenges of contemporary data-intensive biomedical research, particularly regarding the retention and use of data. Conceptualising consent as a compositional act enhances more efficient communication and accountability and, therefore, could enable more trustworthy acts of consent in biomedical science.

Assessing the implementation of user-centred design standards on assistive technology for persons with visual impairments: a systematic review.

Despite scientific and technological advances in the field of assistive technology (AT) for people with visual impairment (VI), technological designs are frequently based on a poor understanding of the physical and social context of use, resulting in devices that are less than optimal for their intended beneficiaries. To resolve this situation, user-centred approaches in the development process of AT have been widely adopted in recent years. However, there is a lack of systematization on the application of this approach. This systematic review registered in PROSPERO (CRD42022307466), assesses the application of the ISO 9241-210 human-centred design principles in allegedly "user-centred designed" AT developments for persons with VI (see Supplementary PROSPERO Protocol). The results point to a wide variation of the depth of understanding of user needs, a poor characterization of the application of the User Centred Design (UCD) approach in the initial design phases or in the early prototyping, and a vague description of user feedback and device iteration. Among the principles set out in ISO 9241-210, the application of 5.6: "the design team includes multidisciplinary skills and perspectives" is the one for which the least evidence is found. The results show there is not enough evidence to fully assess the impact of UCD in (1) promoting innovation regarding AT products and practices, and (2) Judging if AT produced following such standards is leading to better user access, wellbeing outcomes and satisfaction. To address this gap it is necessary to, first, generate better implementation of UCD in AT development and second, to strengthen evidence regarding the implementation and outcomes of using UCD for AT. To better engage with the realities of persons with VI, we propose capacity building across development teams regarding UCD, its principles and components; better planning for UCD implementation; and cross-fertilization across engineering disciplines and social and clinical science. Systematic Review Registration: https://www.crd.york.ac.uk/PROSPERO/display_record.php?RecordID=307466 PROSPERO (CRD42022307466).

What cut-off(s) to use with the Washington Group short set of questions?

The Washington Group short set (WG-SS) questions are increasingly integrated into national household surveys, censuses, and international survey programs. They enable the monitoring of disability rights and the production of internationally comparable statistics. Disability statistics on prevalence and inequalities can be estimated using different cut-offs on the degree of functional difficulties based on the WG-SS. This commentary discusses what cut-offs to adopt for the purpose of investigating and monitoring disability gaps. We recommend a three-way disaggregation comparing persons with (a) no difficulty, (b) some difficulty and (c) a lot of difficulty or unable to do. In cases where sample sizes are small for disaggregated analysis, we recommend comparing persons with no difficulty to persons with any level of difficulty (i.e. persons with any disability).

Video Relay Interpretation and Overcoming Barriers in Health Care for Deaf Users: Scoping Review.

BACKGROUND: 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. OBJECTIVE: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

Citizens' views on sharing their health data: the role of competence, reliability and pursuing the common good.

BACKGROUND: 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. METHODS: 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. RESULTS: The results are a compilation of responses from the mechanics of consent tool divided 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. 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, 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.

Ethics review of big data research: What should stay and what should be reformed?

BACKGROUND: 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. MAIN TEXT: 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. CONCLUSIONS: 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.

Critical success factors for the implementation and adoption of e-learning for junior health care workers in Dadaab refugee camp Kenya.

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 camp. 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 camp. METHODS: 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, individual 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. RESULTS: The results demonstrate that barriers for the implementation of professional education in a refugee camp 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. DISCUSSION: Blended learning enables the design and delivery of high-quality medical education that is sustainable and relevant in a particular environment, e.g. refugee camps. Furthermore, the research reveals that building education pathways could enhance numbers of health workers with the appropriate skillset to serve communities.