Suchergebnisse

OBJECTIVES: Vaccine clinical trials in low‐resource settings have unique challenges due to structural and financial inequities. Specifically, protecting participant and caregiver autonomy to participate in the research study can be a major challenge, so understanding the setting and contextual factors which influence the decision process is necessary. This study investigates the experience of caregivers consenting on behalf of paediatric participants in a malaria vaccine clinical trial where participation enables access to free, high‐quality medical care. METHODS: We interviewed a total of 78 caregivers of paediatric participants previously enrolled in a phase II or III malaria vaccine clinical trial in Uganda, Tanzania and Kenya. Interviews were qualitative and analysed using a thematic framework analysis focusing on the embodied caregiver in the political, economic and social reality. RESULTS: Caregivers of participants in this study made the decision to enrol their child based on economic, social and political factors that extended beyond the trial into the community and the home. The provision of health care was the dominant reason for participation. Respondents reported how social networks, rumours, hierarchal structures, financial constraints and family dynamics affected their experience with research. CONCLUSIONS: The provision of medical care was a powerful motivator for participation. Caregiver choice was limited by structural constraints and scarce financial resources. The decision to participate in research extended beyond individual consent and was embedded in community and domestic hierarchies. Future research should assess other contexts to determine how the choice to participate in research is affected when free medical care is offered.

When clinical trials enter human communities, two complex systems merge—creating challenges for the clinical trial team and the local human community. This is of particular relevance for clinical trials in low-resource settings where the resource scarcity can intensify existing inequities. Here we present a case study of a phase III malaria vaccine clinical trial. Through qualitative interviews with researchers and caregivers of pediatric participants we elucidate themes that shape the clinical trial system. These themes can be a useful complementary planning tool to existing research guidelines for clinical trial researchers. Respondents from both groups reported financial and social contextual realities to be major drivers in the system. We found a strong historical path dependency in the community that was closely tied to the relationships with researchers and indicative of the structural inequities. We elaborate on these findings and offer recommendations to improve trial design.

De 2017 à 2020, l'Académie suisse des sciences humaines et sociales (ASSH) et l'Académie Suisse des Sciences Médicales (ASSM) ont abordé conjointement la relation entre le pouvoir et la médecine dans une série d'événements. Les intervenant·e·s ont expliqué ce que l'on entend par « humanités médicales » (« Medical Humanities ») de manière concrète et vivante : il s'agit des facteurs juridiques, économiques, sociaux, éthiques, culturels et politiques qui ont évolué au cours de l'histoire et qui façonnent et influencent de manière significative la médecine et le système de santé. La première thématique abordée était « La force des normes » (2017). Cet événement a été suivi par « Le pouvoir de l'argent » (2018) et « Le pouvoir du patient » (2019). La série s'est terminée en 2020 par un regard sur le « pouvoir et l'impuissance de la médecine ». ; Cite as: Abel, Thomas et al. (2021): Pouvoir et médecine. Contributions de la série d'événements Medical Humanities 2017-2020. Swiss Academies Reports 16 (10).

Von 2017 bis 2020 haben die Schweizerische Akademie der Geistes- und Sozialwissenschaften (SAGW) gemeinsam mit der Schweizerischen Akademie der Medizinischen Wissenschaften (SAMW) das Verhältnis von Macht und Medizin in einer Veranstaltungsreihe thematisiert. Konkret, anschaulich, praxisnah und erfahrungsgesättigt legten die ReferentInnen dar, was unter «Medical Humanities» zu verstehen ist: Es sind dies die historisch gewachsenen rechtlichen, ökonomischen, sozialen, ethischen, kulturellen und politischen Faktoren, welche die Medizin und das Gesundheitssystem massgeblich gestalten und beeinflussen. Thematisiert wurde zuerst «Die Kraft der Normen» (2017). Es folgte «Die Macht des Geldes» (2018) und «Die Macht des Patienten» (2019). Mit einem Blick in die «Macht und Ohnmacht der Medizin» wurde die Reihe 2020 abgeschlossen. ; cite as: Abel, Thomas et al. (2021): Macht und Medizin. Beiträge aus der Medical Humanities Veranstaltungsreihe 2017-2020. Swiss Academies Reports 16 (10).

"COVID-19 vividly demonstrates the global challenges of crisis communication. A flood of pandemic-related information from various sources and highly variable quality is inundating media platforms. To counter this "infodemic", providing high-quality information is not sufficient. Real-time feedback loops from the public to policy-makers are urgently needed to better align communication strategies, actions taken, and public perception. To achieve this, the PubliCo online platform was launched in November 2020 in Switzerland. It follows a transdisciplinary multi-stakeholder approach rooted in participatory citizen science. PubliCo (https://publico.community/en/) includes three parts: 1. PubliCo Survey, collecting quantitative data, e.g. on moral preferences, while feeding back contextualized, tailored information to users; 2. PubliCo Diaries, collecting in-depth qualitative data, which also informs efforts to adapt PubliCo Survey to the evolving situation; and 3. PubliCo Analytics, which allows policymakers and other platform users to continuously analyse the collected data. We will present the PubliCo concept, considering the following key points: 1. Ethical considerations in the development of PubliCo concerning citizen science and crisis management. 2. PubliCo as a practical tool to implement the procedural ethics concepts such as Accountability for Reasonableness. 3. Lessons learned challenges, and opportunities for the transferability of PubliCo to better manage future crises in different global contexts. With our contribution, we aim to simulate a discussion on the ethical aspects of crisis communication and the strengths and limitations of citizen participation. "