Project Report: Exploring perspectives on genomics and sickle cell public health interventions in Cameroonby Kengne Kamga Karen, Valentine Bitoungui, Abagma Mani, Meya Melanie, Ongey Foncham, Marsha Treadwell, Ambroise Wonkam
This project used qualitative methods to gather an in-depth understanding of cultural influences on perspectives and attitudes regarding genomic research and public health interventions for Sickle Cell Disease-related complications in Cameroon
This study published by Wellcome in 2021 explores the role, benefits and potential of young people’s involvement in health research, with a focus on mental health, infectious diseases and global heating. It provides recommendations on how to meaningfully involve young people in research, and what it means to do that well.
This in-depth empirical analysis of the research field in science communication published in 2020 looks both at strengths and weaknesses of research in the field, and a reflects on its future needs and perspectives.
The Global Code of Conduct for Research in Resource-Poor Settings aims to stop the export of unethical research practices to low and middle income countries.
PANChSHEEEL (Participatory Approach for Nutrition in Children: Strengthening Health, Education, Environment and Engineering Linkages) is an interdisciplinary cross-sector project designed to explore health, education, engineering and environment factors that influence infant and young child feeding practices and nutrition in India.
“Right to Food Project” was implemented by the African Population and Health Research Center from 2018 to 2019 in urban Kenya. Different participatory visual methodologies were used to engage with the community members on the right to food. These included graffiti and wall murals, digital stories, photovoice, radio shows, human libraries, participatory educative theaters, open air events and community dialogue.
Researchers funded by the NIHR Global Health Research Programme are expected to involve patients and the public in planning, implementation and evaluation of their research. This resource guide provides community engagement links, resources, references and learning to offer research teams and funding applicants a starting point
The International Network for Public Involvement and Engagement in Health and Social Care Research was launched in London on 27th November 2017. Our vision is for a world where patient and public involvement is an integral part of health research.
This paper from BMC Medical Ethics explores how researchers and research centres can activtly involve children and young people in health research activities and in the development of research proposals. They used group discussions with community members and schools students in rural Kenya to explore views on the topic.
Literature: Developing a finer grained analysis of research impact: Can we assess the wider effects of public engagement?by Marco Haenssgen
This article, published with a creative commons licence on the LSE Impact Blog, suggests a more comprehensive and balanced approach for the evaluation of public engagement, drawing on evaluation criteria commonly used in aid evaluation.
Literature: From ‘Trial Community’ to ‘Experimental Publics’: How Clinical Research Shapes Public Participationby C. Montgomery & R. Pool, Mesh Editorial Team
This article argues for a conceptual shift away from the static, singular term ‘trial community’ towards ‘experimental publics’. The authors observe that the term ‘community’ is often employed uncritically and assumes that ‘communities’ pre-exist research; that they are timeless and undifferentiated wholes. ‘Experimental publics’, by contrast, are dynamic, multiple, and impermanent in nature.
This paper describes a case study, which planned to involve citizen science in an air pollution study. Findings are based on interviews and observations, including a six-month field diary, of ten scientists who engaged in a citizen science project not because they are convinced of its value as an approach to strong science but in order to receive funding for their scientific research.
Examining the use of participatory visual and narrative methods to explore the lived experience of migrants in Southern Africaby mesh editorial team
This working paper explores the opportunities and challenges associated with visual research methodologies. The paper draws specifically on a MoVE (methods: visual: explore) project that explored the lived experiences of migrant groups in southern Africa.
The Wellcome Trust commissioned report from 2013 on the general public’s attitudes to different types of personal data and data linking. The research looked at whether health data are viewed differently from other types of data, and what are the perceived risks and benefits, to self and society, of linking different kinds of data for research and other purposes.
Developing Ethical Practices for Public Health Research Data Sharing in South Africa: The Views and Experiences From a Diverse Sample of Research Stakeholdersby Spencer G Denny, Blessing Silaigwana, Douglas Wassenaar, Susan Bull, mparker
This qualitative study examined the perceptions, experiences and concerns of 32 research stakeholders about data-sharing practices.
InformalScience.org is a central portal to project, research and evaluation resources designed to support and connect the informal science education community in museums, media, public programs and a growing variety of learning environments
A useful and comprehensive overview of how to undertake research and practice in arts in health. Contains practical advice for the management of a collaborative arts and health project (including how to manage a tender process, plan and evaluation and write a research protocol).
Photovoice Ethics is a report and ethical guide for researchers who want to explore sensitive topics with their audiences.
The Digital storytelling in research is a qualitative report published in February 2017. The paper includes a review of the history and value of digital story telling as an arts based research method for generating data about important issues.
Summary of academic paper critiquing experimental approaches to public engagement advocating instead an 'organic engagement' approach with 'ecological validation' which explores the context and mechanisms in which public's deliberations and opinions are formed. The paper is not open access however a comprehensive summary is given here.
Guide: Performing Ethics: Using Participatory Theatre to Explore Ethical Issues in Community Based Participatory Researchby Mesh Editorial team
A code of ethics created by the San people of Africa for researchers wishing to study their culture.
Banks, S. et al (2014). Using co-inquiry to study co-inquiry: community-university perspectives on research collaboration. Journal of Community Engagement and Scholarship 7(1).
Organisations that undertake research, engagement and policy work are dominated by white middle-class men. The basic question the book attempts to answer is: "what happens when these institutions attempt working with the rest of the world, which is different and diverse?”
Project Report: A puppet show to engage the community addressing antimicrobial resistance and research with childrenby Alice Hawryszkiewycz, phaikyeong
Fishy Clouds, a puppet theatre show, was created to engage the community on issues of antimicrobial resistance and research with children in Thailand. Fishy Clouds ran for twelve shows during the months of November and December 2016 in schools, hospitals, theatres and health centres. The show was performed in Bangkok and in the greater Mae Sot area in the Tak district of Thailand.