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1.
Health Promot Int ; 39(2)2024 Apr 01.
Article in English | MEDLINE | ID: mdl-38558241

ABSTRACT

Although digital health promotion (DHP) technologies for young people are increasingly available in low- and middle-income countries (LMICs), there has been insufficient research investigating whether existing ethical and policy frameworks are adequate to address the challenges and promote the technological opportunities in these settings. In an effort to fill this gap and as part of a larger research project, in November 2022, we conducted a workshop in Cape Town, South Africa, entitled 'Unlocking the Potential of Digital Health Promotion for Young People in Low- and Middle-Income Countries'. The workshop brought together 25 experts from the areas of digital health ethics, youth health and engagement, health policy and promotion and technology development, predominantly from sub-Saharan Africa (SSA), to explore their views on the ethics and governance and potential policy pathways of DHP for young people in LMICs. Using the World Café method, participants contributed their views on (i) the advantages and barriers associated with DHP for youth in LMICs, (ii) the availability and relevance of ethical and regulatory frameworks for DHP and (iii) the translation of ethical principles into policies and implementation practices required by these policies, within the context of SSA. Our thematic analysis of the ensuing discussion revealed a willingness to foster such technologies if they prove safe, do not exacerbate inequalities, put youth at the center and are subject to appropriate oversight. In addition, our work has led to the potential translation of fundamental ethical principles into the form of a policy roadmap for ethically aligned DHP for youth in SSA.


Subject(s)
Digital Health , Health Policy , Humans , Adolescent , South Africa , Health Promotion
2.
BMC Med Ethics ; 25(1): 46, 2024 Apr 18.
Article in English | MEDLINE | ID: mdl-38637857

ABSTRACT

BACKGROUND: The ethical governance of Artificial Intelligence (AI) in health care and public health continues to be an urgent issue for attention in policy, research, and practice. In this paper we report on central themes related to challenges and strategies for promoting ethics in research involving AI in global health, arising from the Global Forum on Bioethics in Research (GFBR), held in Cape Town, South Africa in November 2022. METHODS: The GFBR is an annual meeting organized by the World Health Organization and supported by the Wellcome Trust, the US National Institutes of Health, the UK Medical Research Council (MRC) and the South African MRC. The forum aims to bring together ethicists, researchers, policymakers, research ethics committee members and other actors to engage with challenges and opportunities specifically related to research ethics. In 2022 the focus of the GFBR was "Ethics of AI in Global Health Research". The forum consisted of 6 case study presentations, 16 governance presentations, and a series of small group and large group discussions. A total of 87 participants attended the forum from 31 countries around the world, representing disciplines of bioethics, AI, health policy, health professional practice, research funding, and bioinformatics. In this paper, we highlight central insights arising from GFBR 2022. RESULTS: We describe the significance of four thematic insights arising from the forum: (1) Appropriateness of building AI, (2) Transferability of AI systems, (3) Accountability for AI decision-making and outcomes, and (4) Individual consent. We then describe eight recommendations for governance leaders to enhance the ethical governance of AI in global health research, addressing issues such as AI impact assessments, environmental values, and fair partnerships. CONCLUSIONS: The 2022 Global Forum on Bioethics in Research illustrated several innovations in ethical governance of AI for global health research, as well as several areas in need of urgent attention internationally. This summary is intended to inform international and domestic efforts to strengthen research ethics and support the evolution of governance leadership to meet the demands of AI in global health research.


Subject(s)
Artificial Intelligence , Bioethics , Humans , Global Health , South Africa , Ethics, Research
3.
Prev Med Rep ; 38: 102609, 2024 Feb.
Article in English | MEDLINE | ID: mdl-38375185

ABSTRACT

We investigated the feasibility of an interactive voice response (IVR) survey in Tanzania and compared its prevalence estimates for tobacco use to the estimates of the 'Global Adult Tobacco Survey (GATS) 2018'. IVR participants were enrolled by random digit dialing. Quota sampling was employed to achieve the required sample sizes of age-sex strata: sex (male/female) and age (18-29-, 30-44-, 45-59-, and ≥60-year-olds). GATS was a nationally representative survey and used a multistage stratified cluster sampling design. The IVR sample's weights were generated using the inverse proportional weighting (IPW) method with a logit model and the standard age-sex distribution of Tanzania. The IVR and GATS had 2362 and 4555 participants, respectively. Compared to GATS, the unweighted IVR sample had a higher proportion of males (58.7 % vs. 43.2 %), educated people (secondary/above education: 43.3 % vs. 21.1 %), and urban residents (56.5 % vs. 40 %). The weighted prevalence (95 % confidence interval (CI)) of current smoking was 4.99 % (4.11-6.04), 5.22 % (4.36-6.24), and 7.36 % (6.51-8.31) among IVR (IPW), IVR (age-sex standard), and GATS samples, respectively; the weighted prevalence (95 % CI) of smokeless tobacco use was similar: 3.54 % (2.73-4.57), 3.58 % (2.80-4.56), and 2.43 % (1.98-2.98), respectively. Most differences in point estimates for tobacco indicators were small (<2%). Overall, the odds of tobacco smoking indicators were lower in IVR than in GATS; however, the odds of smokeless tobacco use were reversed. Although we found under-/over-estimation of the prevalence of tobacco use in IVR than GATS, the estimates were close. Further research is required to increase the representativeness of IVR.

4.
Glob Health Action ; 17(1): 2297886, 2024 Dec 31.
Article in English | MEDLINE | ID: mdl-38205794

ABSTRACT

BACKGROUND: Uptake of mobile phone surveys (MPS) is increasing in many low- and middle-income countries, particularly within the context of data collection on non-communicable diseases (NCDs) behavioural risk factors. One barrier to collecting representative data through MPS is capturing data from older participants.Respondent driven sampling (RDS) consists of chain-referral strategies where existing study subjects recruit follow-up participants purposively based on predefined eligibility criteria. Adapting RDS strategies to MPS efforts could, theoretically, yield higher rates of participation for that age group. OBJECTIVE: To investigate factors that influence the perceived acceptability of a RDS recruitment method for MPS involving people over 45 years of age living in Colombia. METHODS: An MPS recruitment strategy deploying RDS techniques was piloted to increase participation of older populations. We conducted a qualitative study that drew from surveys with open and closed-ended items, semi-structured interviews for feedback, and focus group discussions to explore perceptions of the strategy and barriers to its application amongst MPS participants. RESULTS: The strategy's success is affected by factors such as cultural adaptation, institutional credibility and public trust, data protection, and challenges with mobile phone technology. These factors are relevant to individuals' willingness to facilitate RDS efforts targeting hard-to-reach people. Recruitment strategies are valuable in part because hard-to-reach populations are often most accessible through their contacts within their social network who can serve as trust liaisons and drive engagement. CONCLUSIONS: These findings may inform future studies where similar interventions are being considered to improve access to mobile phone-based data collection amongst hard-to-reach groups.


Subject(s)
Cell Phone , Humans , Colombia , Qualitative Research , Focus Groups , Surveys and Questionnaires
5.
Wellcome Open Res ; 8: 120, 2023.
Article in English | MEDLINE | ID: mdl-38089903

ABSTRACT

Background: Use of adaptive clinical trials, particularly adaptive platform trials, has grown exponentially in response to the coronavirus disease (COVID-19) pandemic. Implementation of these trials in low- and middle-income countries (LMICs) has been fostered through the formation or modification of transnational research partnerships, typically between research groups from LMICs and high-income countries (HICs). While these partnerships are important to promote collaboration and overcome the structural and economic disadvantages faced by LMIC health researchers, it is critical to focus attention on the multiple dimensions of partnership equity. Methods: Based on informal literature reviews and a meeting with leaders of one of the multinational COVID-19 adaptive platform trials, we describe some important considerations about research partnership equity in this context. Results: We organize these considerations into eight thematic categories: 1) epistemic structures, 2) funding, 3) ethics oversight, 4) regulatory oversight, 5) leadership, 6) post-trial access to interventions, data, and specimens, 7) knowledge translation and dissemination, and 8) research capacity strengthening and maintenance. Within each category we review normative claims that support its relevance to research partnership equity followed by discussion of how adaptive platform trials highlight new dimensions, considerations, or challenges. Conclusion: In aggregate, these observations provide insight into procedural and substantive equity-building measures within transnational global health research partnerships more broadly.

7.
Ethics Hum Res ; 45(5): 2-14, 2023.
Article in English | MEDLINE | ID: mdl-37777976

ABSTRACT

Over recent decades, adaptive trial designs have been used more and more often for clinical trials, including randomized controlled trials (RCTs). This rise in the use of adaptive RCTs has been accompanied by debates about whether such trials offer ethical and methodological advantages over traditional, fixed RCTs. This study examined how experts on clinical trial methods and ethics believe that adaptive RCTs, compared to fixed ones, affect the ethical character of clinical research. We conducted in-depth interviews with 17 researchers from bioethics, epidemiology, biostatistics, and/or medical backgrounds. While about half believed that adaptive trials are more complex and may thus threaten autonomy, these respondents also expressed that this challenge is not insurmountable. Most respondents expressed that efficiency and potential for participant benefit were the main justifications for adaptive trials. There was tension about whether adaptive randomization in response to increasing information disrupts clinical equipoise, with some respondents insisting that uncertainty still exists and therefore clinical equipoise is not disrupted. These findings suggest that further discussion is needed to increase the awareness and utility of these study designs.


Subject(s)
Ethics, Research , Research Design , Humans , Randomized Controlled Trials as Topic , Random Allocation , Therapeutic Equipoise
9.
PLOS Glob Public Health ; 3(7): e0002053, 2023.
Article in English | MEDLINE | ID: mdl-37498841

ABSTRACT

Non-communicable disease (NCD) risk factor data from low- and middle-income countries (LMICs) are inadequate, mostly due to the cost and burden of collecting in-person population-level estimates. High-income countries regularly use phone-based surveys, and with increasing mobile phone subscription in developing countries, mobile phone surveys (MPS) could complement in-person surveys in LMICs. We compared the representativeness and prevalence estimates of two MPS (i.e., interactive voice response (IVR) and computer-assisted telephone interview (CATI)) with a nationally representative household survey in Bangladesh-the STEPwise approach to NCD risk factor surveillance (STEPs) 2018. This cross-sectional study included 18-69-year-old respondents. CATI and IVR recruitments were done by random digit dialing, while STEPs used multistage cluster sampling design. The prevalence of NCD risk factors related to tobacco, alcohol, diet, and hypertension was reported and compared by prevalence differences (PD) and prevalence ratios (PR). We included 2355 (57% males), 1942 (62% males), and 8185 (47% males) respondents in the CATI, IVR, and STEPs, respectively. CATI (28%) and IVR (52%) had a higher proportion of secondary/above-educated people than STEPs (13%). Most prevalence estimates differed by survey mode; however, CATI estimates were closer to STEPs than IVR. For instance, in CATI, IVR, and STEPs, respectively, the prevalence was 21.4%, 17.9%, and 23.5% for current smoking; and 1.6%, 2.2%, and 1.5% for alcohol drinking in past month. Compared to STEPs, the PD ranged from '-56.6% to 0.4%' in CATI and '-41.0% to 8.4%' in IVR; the PR ranged from '0.3 to 1.1' in CATI and '0.3 to 1.6' in IVR. There were some differences and some similarities in NCD indicators produced by MPS and STEPs with differences likely due to differences in socioeconomic characteristics between survey participants.

11.
BMJ Open ; 13(6): e073647, 2023 06 16.
Article in English | MEDLINE | ID: mdl-37328185

ABSTRACT

OBJECTIVES: As mobile phone ownership becomes more widespread in low-income and middle-income countries, mobile phone surveys (MPSs) present an opportunity to collect data on health more cost-effectively. However, selectivity and coverage biases in MPS are concerns, and there is limited information about the population-level representativeness of these surveys compared with household surveys. This study aims at comparing the sociodemographic characteristics of the respondents of an MPS on non-communicable disease risk factors to a household survey in Colombia. DESIGN: Cross-sectional study. We used a random digit dialling method to select the samples for calling mobile phone numbers. The survey was conducted using two modalities: computer-assisted telephone interviews (CATIs) and interactive voice response (IVR). The participants were assigned randomly to one of the survey modalities based on a targeted sampling quota stratified by age and sex. The Quality-of-Life Survey (ECV), a nationally representative survey conducted in the same year of the MPS, was used as a reference to compare the sample distributions by sociodemographic characteristics of the MPS data. Univariate and bivariate analyses were performed to evaluate the population representativeness between the ECV and the MPSs. SETTING: The study was conducted in Colombia in 2021. PARTICIPANTS: Population at least 18 years old with a mobile phone. RESULTS: We completed 1926 and 2983 interviews for CATI and IVR, respectively. We found that the MPS data have a similar (within 10% points) age-sex data distribution compared with the ECV dataset for some subpopulations, mainly for young populations, people with none/primary and secondary education levels, and people who live in urban and rural areas. CONCLUSIONS: This study shows that MPS could collect similar data to household surveys in terms of age, sex, high school education level and geographical area for some population categories. Strategies are needed to improve representativeness of the under-represented groups.


Subject(s)
Cell Phone , Humans , Adolescent , Cross-Sectional Studies , Health Surveys , Colombia/epidemiology , Surveys and Questionnaires , Age Distribution
12.
Ethics Hum Res ; 45(3): 29-39, 2023.
Article in English | MEDLINE | ID: mdl-37167475

ABSTRACT

Educational programs are integral to building health research ethics (HRE) capacity, but no outcomes framework exists to guide them. We empirically developed a competency framework for health research ethics education-the Framework for Research Ethics Studies Competencies and Outcomes (FRESCO)-using mixed methods, including group concept mapping and a survey of international experts. FRESCO includes seven competency domains: (1) Foundational Knowledge; (2) Laws, Regulations, Guidelines, and Policies for Research Oversight; (3) Ethical-Issue Identification, Analysis, and Resolution; (4) Engagement, Communication, and Advocacy; (5) Lifelong Learning, Education, Research, and Scholarship; (6) Coordination, Stewardship, and Responsiveness in HRE Systems; and (7) Impartiality, Honesty, and Responsibility. These domains are detailed in 27 subdomains. Survey respondents rated FRESCO's relevance to HRE highly. FRESCO can be adapted and implemented in educational programs to refine recruitment and selection processes, educational and assessment methods, and performance measures to ensure that HRE educational programs have their intended effects.


Subject(s)
Communication , Ethics, Research , Humans , Educational Status , Health Education
13.
Health Res Policy Syst ; 21(1): 32, 2023 May 01.
Article in English | MEDLINE | ID: mdl-37127604

ABSTRACT

BACKGROUND: Recommendations for research partnerships between low- and middle-income countries (LMICs) and high-income countries (HICs) stress the importance of equity within the collaboration. However, there is limited knowledge of the practical challenges and successes involved in establishing equitable research practices. This study describes the results of a pilot survey assessing key issues on LMIC/HIC partnership equity within HIV/AIDS research collaborations and compares perspectives of these issues between LMIC- and HIC-based investigators. METHODS: Survey participants were selected using clustered, random sampling and snowball sampling. Responses were compared between LMIC and HIC respondents using standard descriptive statistics. Qualitative respondent feedback was analyzed using a combination of exploratory and confirmatory thematic analysis. RESULTS: The majority of categories within four themes (research interests and resources; leadership, trust, and communication; cultural and ethical competence; representation and benefits) demonstrated relative consensus between LMIC and HIC respondents except for 'lack of trust within the partnership' which was rated as a more pronounced challenge by LMIC respondents. However, subcategories within some of the themes had significant differences between respondent groups including: equitable setting of the research agenda, compromise within a partnership, the role of regulatory bodies in monitoring partnerships for equity, and post-study access to research technology. CONCLUSIONS: These efforts serve as a proof-of-concept survey characterizing contemporary issues around international research partnership equity. The frequency and severity of specific equity issues can be assessed, highlighting similarities versus differences in experiences between LMIC and HIC partners as potential targets for further discussion and evaluation.


Subject(s)
Developing Countries , HIV Infections , Humans , Developed Countries , Global Health , Surveys and Questionnaires
14.
JMIR Res Protoc ; 12: e44727, 2023 Jul 13.
Article in English | MEDLINE | ID: mdl-37205637

ABSTRACT

BACKGROUND: Despite experiencing many adversities, American Indian and Alaska Native populations have demonstrated tremendous resilience during the COVID-19 pandemic, drawing upon Indigenous determinants of health (IDOH) and Indigenous Nation Building. OBJECTIVE: Our multidisciplinary team undertook this study to achieve two aims: (1) to determine the role of IDOH in tribal government policy and action that supports Indigenous mental health and well-being and, in turn, resilience during the COVID-19 crisis and (2) to document the impact of IDOH on Indigenous mental health, well-being, and resilience of 4 community groups, specifically first responders, educators, traditional knowledge holders and practitioners, and members of the substance use recovery community, working in or near 3 Native nations in Arizona. METHODS: To guide this study, we developed a conceptual framework based on IDOH, Indigenous Nation Building, and concepts of Indigenous mental well-being and resilience. The research process was guided by the Collective benefit, Authority to control, Responsibility, Ethics (CARE) principles for Indigenous Data Governance to honor tribal and data sovereignty. Data were collected through a multimethods research design, including interviews, talking circles, asset mapping, and coding of executive orders. Special attention was placed on the assets and culturally, socially, and geographically distinct features of each Native nation and the communities within them. Our study was unique in that our research team consisted predominantly of Indigenous scholars and community researchers representing at least 8 tribal communities and nations in the United States. The members of the team, regardless of whether they identified themselves as Indigenous or non-Indigenous, have many collective years of experience working with Indigenous Peoples, which ensures that the approach is culturally respectful and appropriate. RESULTS: The number of participants enrolled in this study was 105 adults, with 92 individuals interviewed and 13 individuals engaged in 4 talking circles. Because of time constraints, the team elected to host talking circles with only 1 nation, with participants ranging from 2 to 6 in each group. Currently, we are in the process of conducting a qualitative analysis of the transcribed narratives from interviews, talking circles, and executive orders. These processes and outcomes will be described in future studies. CONCLUSIONS: This community-engaged study lays the groundwork for future studies addressing Indigenous mental health, well-being, and resilience. Findings from this study will be shared through presentations and publications with larger Indigenous and non-Indigenous audiences, including local recovery groups, treatment centers, and individuals in recovery; K-12 and higher education educators and administrators; directors of first responder agencies; traditional medicine practitioners; and elected community leaders. The findings will also be used to produce well-being and resilience education materials, in-service training sessions, and future recommendations for stakeholder organizations. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/44727.

15.
PLoS One ; 18(5): e0285155, 2023.
Article in English | MEDLINE | ID: mdl-37224125

ABSTRACT

INTRODUCTION: Although interactive voice response (IVR) is a promising mobile phone survey (MPS) method for public health data collection in low- and middle-income countries (LMICs), participation rates for this method remain lower than traditional methods. This study tested whether using different introductory messages increases the participation rates of IVR surveys in two LMICs, Bangladesh and Uganda. METHODS: We conducted two randomized, controlled micro-trials using fully-automated random digit dialing to test the impact of (1) the gender of the speaker recording the survey (i.e., survey voice); and (2) the valence of the invitation to participate in the survey (i.e., survey introduction) on response and cooperation rates. Participants indicated their consent by using the keypad of cellphones. Four study arms were compared: (1) male and informational (MI); (2) female and information (FI); (3) male and motivational (MM); and (4) female and motivational (FM). RESULTS: Bangladesh and Uganda had 1705 and 1732 complete surveys, respectively. In both countries, a majority of the respondents were males, young adults (i.e., 18-29-year-olds), urban residents, and had O-level/above education level. In Bangladesh, the contact rate was higher in FI (48.9%), MM (50.0%), and FM (55.2%) groups than in MI (43.0%); the response rate was higher in FI (32.3%) and FM (33.1%) but not in MM (27.2%) and MI (27.1%). Some differences in cooperation and refusal rates were also observed. In Uganda, MM (65.4%) and FM (67.9%) had higher contact rates than MI (60.8%). The response rate was only higher in MI (52.5%) compared to MI (45.9%). Refusal and cooperation rates were similar. In Bangladesh, after pooling by introductions, female arms had higher contact (52.1% vs 46.5%), response (32.7% vs 27.1%), and cooperation (47.8% vs 40.4%) rates than male arms. Pooling by gender showed higher contact (52.3% vs 45.6%) and refusal (22.5% vs 16.3%) rates but lower cooperation rate (40.0% vs 48.2%) in motivational arms than informational arms. In Uganda, pooling intros did not show any difference in survey rates by gender; however, pooling by intros showed higher contact (66.5% vs 61.5%) and response (50.0% vs 45.2%) rates in motivational arms than informational arms. CONCLUSION: Overall, we found higher survey rates among female voice and motivational introduction arms compared to male voice and informational introduction arm in Bangladesh. However, Uganda had higher rates for motivational intro arms only compared to informational arms. Gender and valence must be considered for successful IVR surveys. TRIAL REGISTRATION: Name of the registry: ClinicalTrials.gov. Trial registration number: NCT03772431. Date of registration: 12/11/2018, Retrospectively Registered. URL of trial registry record: https://clinicaltrials.gov/ct2/show/NCT03772431?term=03772431&cond=Non-Communicable+Disease&draw=2&rank=1. Protocol Availability: https://www.researchprotocols.org/2017/5/e81.


Subject(s)
Cell Phone , Noncommunicable Diseases , Young Adult , Female , Male , Humans , Bangladesh/epidemiology , Uganda , Randomized Controlled Trials as Topic , Surveys and Questionnaires
16.
JMIR Form Res ; 7: e38774, 2023 Apr 20.
Article in English | MEDLINE | ID: mdl-37079373

ABSTRACT

BACKGROUND: Mobile phone surveys provide a novel opportunity to collect population-based estimates of public health risk factors; however, nonresponse and low participation challenge the goal of collecting unbiased survey estimates. OBJECTIVE: This study compares the performance of computer-assisted telephone interview (CATI) and interactive voice response (IVR) survey modalities for noncommunicable disease risk factors in Bangladesh and Tanzania. METHODS: This study used secondary data from a randomized crossover trial. Between June 2017 and August 2017, study participants were identified using the random digit dialing method. Mobile phone numbers were randomly allocated to either a CATI or IVR survey. The analysis examined survey completion, contact, response, refusal, and cooperation rates of those who received the CATI and IVR surveys. Differences in survey outcomes between modes were assessed using multilevel, multivariable logistic regression models to adjust for confounding covariates. These analyses were adjusted for clustering effects by mobile network providers. RESULTS: For the CATI surveys, 7044 and 4399 phone numbers were contacted in Bangladesh and Tanzania, respectively, and 60,863 and 51,685 phone numbers, respectively, were contacted for the IVR survey. The total numbers of completed interviews in Bangladesh were 949 for CATI and 1026 for IVR and in Tanzania were 447 for CATI and 801 for IVR. Response rates for CATI were 5.4% (377/7044) in Bangladesh and 8.6% (376/4391) in Tanzania; response rates for IVR were 0.8% (498/60,377) in Bangladesh and 1.1% (586/51,483) in Tanzania. The distribution of the survey population was significantly different from the census distribution. In both countries, IVR respondents were younger, were predominantly male, and had higher education levels than CATI respondents. IVR respondents had a lower response rate than CATI respondents in Bangladesh (adjusted odds ratio [AOR]=0.73, 95% CI 0.54-0.99) and Tanzania (AOR=0.32, 95% CI 0.16-0.60). The cooperation rate was also lower with IVR than with CATI in Bangladesh (AOR=0.12, 95% CI 0.07-0.20) and Tanzania (AOR=0.28, 95% CI 0.14-0.56). Both in Bangladesh (AOR=0.33, 95% CI 0.25-0.43) and Tanzania (AOR=0.09, 95% CI 0.06-0.14), there were fewer completed interviews with IVR than with CATI; however, there were more partial interviews with IVR than with CATI in both countries. CONCLUSIONS: There were lower completion, response, and cooperation rates with IVR than with CATI in both countries. This finding suggests that, to increase representativeness in certain settings, a selective approach may be needed to design and deploy mobile phone surveys to increase population representativeness. Overall, CATI surveys may offer a promising approach for surveying potentially under-represented groups like women, rural residents, and participants with lower levels of education in some countries.

17.
Dev World Bioeth ; 2023 Mar 02.
Article in English | MEDLINE | ID: mdl-36861660

ABSTRACT

The need to understand the systems that support ethical health research has long been recognized, but there are limited descriptions of actual health research ethics (HRE) systems. Using participatory network mapping methods, we empirically defined Malaysia's HRE system. 13 Malaysian stakeholders identified 4 overarching and 25 specific HRE system functions and 35 actors internal and 3 external to the Malaysian HRE system responsible for those functions. Functions requiring the most attention were: advising on legislation related to HRE; optimizing research value to society; and defining standards for HRE oversight. Internal actors with the greatest potential for more influence were: the national network of research ethics committees; non-institution-based research ethics committees; and research participants. The World Health Organization, an external actor, had the largest untapped potential for influence overall. In summary, this stakeholder-driven process identified HRE system functions and actors that could be targeted to increase HRE system capacity.

18.
J Clin Ethics ; 34(1): 51-57, 2023.
Article in English | MEDLINE | ID: mdl-36940355

ABSTRACT

AbstractThe COVID-19 pandemic has inspired numerous opportunities for telehealth implementation to meet diverse healthcare needs, including the use of virtual communication platforms to facilitate the growth of and access to clinical ethics consultation (CEC) services across the globe. Here we discuss the conceptualization and implementation of two different virtual CEC services that arose during the COVID-19 pandemic: the Clinical Ethics Malaysia COVID-19 Consultation Service and the Johns Hopkins Hospital Ethics Committee and Consultation Service. A common strength experienced by both platforms during virtual delivery included improved ability for local practitioners to address consultation needs for patient populations otherwise unable to access CEC services in their respective locations. Additionally, virtual platforms allowed for enhanced collaboration and sharing of expertise among ethics consultants. Both contexts encountered numerous challenges related to patient care delivery during the pandemic. The use of virtual technologies resulted in decreased personalization of patient-provider communication. We discuss these challenges with respect to contextual differences specific to each service and setting, including differences in CEC needs, sociocultural norms, resource availability, populations served, consultation service visibility, healthcare infrastructure, and funding disparities. Through lessons learned from a health system in the United States and a national service in Malaysia, we provide key recommendations for health practitioners and clinical ethics consultants to leverage virtual communication platforms to mitigate existing inequities in patient care delivery and increase capacity for CEC globally.


Subject(s)
COVID-19 , Ethics Consultation , Ethics, Clinical , Humans , Malaysia , Pandemics , United States , Telemedicine
19.
PLoS One ; 17(12): e0279236, 2022.
Article in English | MEDLINE | ID: mdl-36542631

ABSTRACT

INTRODUCTION: Automated mobile phone surveys (MPS) can be used to collect public health data of various types to inform health policy and programs globally. One challenge in administering MPS is identification of an appropriate and effective participant consent process. This study investigated the impact of different survey consent approaches on participant disposition (response characteristics and understanding of the purpose of the survey) within the context of an MPS that measured noncommunicable disease (NCD) risk factors across Colombia and Uganda. METHODS: Participants were randomized to one of five consent approaches, with consent modules varying by the consent disclosure and mode of authorization. The control arm consisted of a standard consent disclosure and a combined opt-in/opt-out mode of authorization. The other four arms consist of a modified consent disclosure and one of four different forms of authorization (i.e., opt-in, opt-out, combined opt-in/opt-out, or implied). Data related to respondent disposition and respondent understanding of the survey purpose were analyzed. RESULTS: Among 1889 completed surveys in Colombia, differences in contact, response, refusal, and cooperation rates by study arms were found. About 68% of respondents correctly identified the survey purpose, with no significant difference by study arm. Participants reporting higher levels of education and urban residency were more likely to identify the purpose correctly. Participants were also more likely to accurately identify the survey purpose after completing several survey modules, compared to immediately following the consent disclosure (78.8% vs 54.2% correct, p<0.001). In Uganda, 1890 completed surveys were collected. Though there were differences in contact, refusal, and cooperation rates by study arm, response rates were similar across arms. About 37% of respondents identified the survey purpose correctly, with no difference by arm. Those with higher levels of education and who completed the survey in English were able to more accurately identify the survey purpose. Again, participants were more likely to accurately identify the purpose of the survey after completing several NCD modules, compared to immediately following the consent module (42.0% vs 32.2% correct, p = 0.013). CONCLUSION: This study contributes to the limited available evidence regarding consent procedures for automated MPS. Future studies should develop and trial additional interventions to enhance consent for automated public health surveys, and measure other dimensions of participant engagement and understanding.


Subject(s)
Cell Phone , Noncommunicable Diseases , Humans , Uganda , Colombia , Surveys and Questionnaires , Risk Factors , Informed Consent
20.
Wellcome Open Res ; 7: 176, 2022.
Article in English | MEDLINE | ID: mdl-36324703

ABSTRACT

The Global Infectious Disease Ethics (GLIDE) Collaborative is launching a new Wellcome Open Research (WOR) Gateway, and we as the leaders of GLIDE hope to encourage submissions to this timely and necessary new platform for publishing open access peer-reviewed articles focusing on this area.

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