Doing ethical research together:A communitarian toolkit for ethical research beyond borders

The toolkit for ethical research developed out of a research project that focused on establishing place-based, community-centred best practice in grand challenges-related research ethics, integrity and conduct. We held 5 roundtable events at The University of Edinburgh drawing together more than 200 researchers from 30 countries and more than 60 discipline areas. These conversations highlighted that we needed a clarifying worldview to support place-based, community-centred, ethical action at every stage of the research journey. In response, we created a toolkit - accessible and practical material to guide people involved in complex community-based research. This toolkit explores an ethical worldview for research and provides practical guidance and questions to consider at every stage of the research journey, from developing an ethical research question through to being accountable for the legacy of your research long after the project has concluded

Ethics in global research:Creating a toolkit to support integrity and ethical action throughout the research journey

Global challenge-led research seeks to contribute to solution-generation for complex problems. Multicultural, multidisciplinary, and multisectoral teams must be capable of operating in highly demanding contexts. This brings with it a swathe of ethical conflicts that require quick and effective solutions that respect both international conventions and cultural diversity. The objective of this article is to describe the process of creating a toolkit designed to support global researchers in navigating these ethical challenges. The process of creating the toolkit embodied the model of ethical research practice that it advocates. Specifically, at the heart of ethical decision-making is consideration of the following: Place , solutions must be relevant to the context in which they are to be used; People , those impacted by the outcomes must be partners in co-creation; Principles , ethical projects must be guided by clear values; and Precedent , the existing evidence-base should guide the project and, in turn, the project should extend the evidence-base. It is the thesis underlying the toolkit that consideration of these 4Ps provides a strong basis for understanding ethical conflicts and allows for the generation of potential solutions. This toolkit has been designed in two phases of collaborative work. More than 200 researchers participated from more than 30 countries and more than 60 different disciplines. This allowed us to develop a model for contextual, dynamic analysis of ethical conflicts in global research that is complementary to traditional codes of ethics. It emphasizes the need to consider ethical analysis as an iterative, reflective, process relevant at all stages of the research journey, including, ultimately, in evaluating the legacy of a project. The toolkit is presented as an open access website to promote universal access. A downloadable “pocket guide” version is also now available in 11 languages

Psychosis Recovery Orientation in Malawi by Improving Services and Engagement (PROMISE) protocol

Malawi has a population of around 20 million people and is one of the world's most economically deprived nations. Severe mental illness (largely comprising psychoses and severe mood disorders) is managed by a very small number of staff in four tertiary facilities, aided by clinical officers and nurses in general hospitals and clinics. Given these constraints, psychosis is largely undetected and untreated, with a median duration of untreated psychosis (DUP) of around six years. Our aim is to work with people with lived experience (PWLE), caregivers, local communities and health leaders to develop acceptable and sustainable psychosis detection and management systems to increase psychosis awareness, reduce DUP, and to improve the health and lives of people with psychosis in Malawi. We will use the UK Medical Research Council guidance for developing and evaluating complex interventions, including qualitative work to explore diverse perspectives around psychosis detection, management, and outcomes, augmented by co-design with PWLE, and underpinned by a Theory of Change. Planned deliverables include a readily usable management blueprint encompassing education and community supports, with an integrated care pathway that includes Primary Health Centre clinics and District Mental Health Teams. PWLE and caregivers will be closely involved throughout to ensure that the interventions are shaped by the communities concerned. The effect of the interventions will be assessed with a quasi-experimental sequential implementation in three regions, in terms of DUP reduction, symptom remission, functional recovery and PWLE / caregiver impact, with quality of life as the primary outcome. As the study team is focused on long-term impact, we recognise the importance of having embedded, robust evaluation of the programme as a whole. We will therefore evaluate implementation processes and outcomes, and cost-effectiveness, to demonstrate the value of this approach to the Ministry of Health, and to encourage longer-term adoption across Malawi.</p

Involving mosques in health promotion programmes: a qualitative exploration of the MCLASS intervention on smoking in the home

Second-hand smoke (SHS) exposure is high among UK Bangladeshi and Pakistani populations, reflecting higher male smoking prevalence and fewer home smoking restrictions than the general population. The Muslim Communities Learning About Second-hand Smoke (MCLASS) study explored the feasibility and acceptability of implementing SHS education in 14 UK mosques. Religious teachers (RTs) in seven intervention mosques were trained and provided with a culturally appropriate educational package. After the intervention, mosque leaders, RTs and congregants’ experiences and perceptions of the intervention were explored through interviews and focus group discussions. Delivery of the intervention varied across mosques. Facilitators and barriers included: mosque diversity (congregation size, organizational structure, educational activities, women’s role and involvement); degree of trust between researchers and personnel; and views on SHS. Most participants thought mosques’ involvement in SHS health promotion was appropriate, but the perceived importance of SHS differed. We found that a health promotion programme delivered within Islamic religious settings that engages RTs in the process of facilitation, can be acceptable and feasible, but care must be taken to explore the culture and ethos of the institution, including its organizational structure, management committee, RTs and congregation

National plans and awareness campaigns as priorities for achieving global brain health

Neurological conditions are the leading cause of death and disability combined. This public health crisis has become a global priority with the introduction of WHO's Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders 2022–2031 (IGAP). 18 months after this plan was adopted, global neurology stakeholders, including representatives of the OneNeurology Partnership (a consortium uniting global neurology organisations), take stock and advocate for urgent acceleration of IGAP implementation. Drawing on lessons from relevant global health contexts, this Health Policy identifies two priority IGAP targets to expedite national delivery of the entire 10-year plan: namely, to update national policies and plans, and to create awareness campaigns and advocacy programmes for neurological conditions and brain health. To ensure rapid attainment of the identified priority targets, six strategic drivers are proposed: universal community awareness, integrated neurology approaches, intersectoral governance, regionally coordinated IGAP domestication, lived experience-informed policy making, and neurological mainstreaming (advocating to embed brain health into broader policy agendas). Contextualised with globally emerging IGAP-directed efforts and key considerations for intersectoral policy design, this novel framework provides actionable recommendations for policy makers and IGAP implementation partners. Timely, synergistic pursuit of the six drivers might aid WHO member states in cultivating public awareness and policy structures required for successful intersectoral roll-out of IGAP by 2031, paving the way towards brain health for all.</p

National plans and awareness campaigns as priorities for achieving global brain health

Neurological conditions are the leading cause of death and disability combined. This public health crisis has become a global priority with the introduction of WHO's Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders 2022–2031 (IGAP). 18 months after this plan was adopted, global neurology stakeholders, including representatives of the OneNeurology Partnership (a consortium uniting global neurology organisations), take stock and advocate for urgent acceleration of IGAP implementation. Drawing on lessons from relevant global health contexts, this Health Policy identifies two priority IGAP targets to expedite national delivery of the entire 10-year plan: namely, to update national policies and plans, and to create awareness campaigns and advocacy programmes for neurological conditions and brain health. To ensure rapid attainment of the identified priority targets, six strategic drivers are proposed: universal community awareness, integrated neurology approaches, intersectoral governance, regionally coordinated IGAP domestication, lived experience-informed policy making, and neurological mainstreaming (advocating to embed brain health into broader policy agendas). Contextualised with globally emerging IGAP-directed efforts and key considerations for intersectoral policy design, this novel framework provides actionable recommendations for policy makers and IGAP implementation partners. Timely, synergistic pursuit of the six drivers might aid WHO member states in cultivating public awareness and policy structures required for successful intersectoral roll-out of IGAP by 2031, paving the way towards brain health for all.</p

Development and evaluation of an intervention providing insight into the tobacco industry to prevent smoking uptake: a mixed-methods study

Background Smokers who start smoking at an early age are less likely to quit and more likely to die from their habit. Evidence from the US Truth® campaign suggests that interventions focusing on tobacco industry practices and ethics may be effective in preventing smoking uptake. Objectives In an exploratory study, to develop, pilot and provide preliminary evidence of the acceptability and effectiveness of Operation Smoke Storm, a school-based intervention based on the premise of the Truth® campaign, to prevent smoking uptake. Design Mixed-methods, non-randomised controlled study. Component 1 was delivered to Year 7 students, and student focus groups and teacher interviews were conducted to refine the lessons and to develop components 2 and 3. The revised Year 7 lessons and accompanying family booklet were delivered to new Year 7 students 1 year later in one school only; Year 8 students in both schools received the booster session. Setting and participants Students in Years 7–8 (aged 11–13 years) in two UK schools. Intervention A three-component intervention comprising (1) three 50-minute classroom-based sessions in Year 7 in which students acted as secret agents to uncover industry practices through videos, quizzes, discussions and presentations; (2) an accompanying family booklet containing activities designed to stimulate discussions about smoking between parents and students; and (3) a 1-hour interactive classroom-based booster session for Year 8 students, in which students learnt about tobacco marketing strategies from the perspectives of an industry executive, a marketing company and a health campaigner. Main outcome measures Odds ratios to compare the self-reported prevalence of ever smoking and susceptibility to smoking in Year 8 students after the delivery of the booster session in study schools compared with students in local control schools. Qualitative data on acceptability of the intervention. Results The combined prevalence of ever smoking and susceptibility increased from 18.2% in Year 7 to 33.8% in Year 8. After adjusting for confounders there was no significant difference in the odds of a Year 8 student in an intervention school being an ever smoker or susceptible never smoker compared with controls [adjusted odds ratio (aOR) 1.28, 95% confidence interval (CI) 0.83 to 1.97; p = 0.263] and no significant difference in the odds of ever smoking (aOR 0.82, 95% CI 0.42 to 1.58; p = 0.549). Students mostly enjoyed the intervention and acquired new knowledge that appeared to strengthen their aversion to smoking. Teachers liked the ‘off-the-shelf’ nature of the resource, although they highlighted differences by academic ability in the extent to which students understood the messages being presented. Use of the family component was low but it was received positively by those parents who did engage with it. Limitations Logistical difficulties meant that students’ responses in Year 7 and Year 8 could not be linked; however, baseline smoking behaviours differed little between intervention and control schools, and analyses were adjusted for confounders measured at follow-up. Conclusions Operation Smoke Storm is an acceptable resource for delivering smoking-prevention education but it does not appear to have reduced smoking and susceptibility. Future work The lack of a strong signal for potential effectiveness, considered alongside logistical difficulties in recruiting and working with schools, suggests that a fully powered cluster randomised trial of the intervention is not warranted

District disability forums in Malawi - emerging strengths and weaknesses

Global priorities for disability are shifting away from medical intervention to a social, human rights-based approach. As a result, more attention is being paid to disability as a function of society, rather than as the inevitable consequence of having a physical or mental impairment. In Malawi, changing legal landscapes have created a political climate favorable to promoting the rights of persons with disabilities, at least on paper. Implementation of the legislation, however, is slow and enforcement difficult because of a lack of communication throughout levels of government, and little funding. Using a grassroots approach to make change starting at the local level is one approach to increasing the inclusion of persons with disabilities across the country. The Federation of Disability Organizations in Malawi (FEDOMA) created District Disability Forums (DDFs) to empower grassroots advocates to make change within their communities, working from the bottom-up for access to the social and economic freedoms codified by the central government. This case study uses two examples to demonstrate the gains in social capital strength made by the DDFs, leading to positive programmatic outcomes. However, the examples also demonstrate emerging weaknesses for the DDFs, particularly barriers to project implementation caused by a lack of physical access to remote areas, an especially challenging issue for persons with disabilities. Finally, we discuss future paths for the DDFs to continue building on strengths and address weaknesses, including the creation of sub-district forums in an effort to further decentralise advocacy work