Welcome - Participatory Research (mesh)

Guide: Essential Principles & Practices for GPP Compliance: Engaging stakeholders in biomedical research during the era of COVID-19

This tool from AVAC in intended to help guide stakeholder engagement in COVID-19 research. Built from the Good Participatory Practice Guidelines for Biomedical HIV Prevention Trials (GPP), it responds to needs expressed by both researchers and advocates.

Guide: WHO R&D Good Participatory Practice for COVID-19 clinical trials: a toolbox

This toolbox was developed in 2020 for the World Health Organisation COVID-19 Research Roadmap and provides a synthesis of key action points from the WHO GPP-EP guidelines. This “how to” guide gives an overview, tips and resources and will be updated as new resources are completed and approved.

Guide: WHO guidelines on Good Participatory Practice for Trials of Emerging Pathogens (GPP-EP)

GPP-EP were prepared in 2016 by the WHO to support prevention and treatment trials of emerging (and re-emerging) pathogens that were likely to cause severe outbreaks. The guidelines address how to engage community stakeholders and promote ethical standards throughout the research process. 

Guide: Empowering meaningful community engagement and involvement in global health research - critical reflections and guiding questions

This learning resource, from the UK's NIHR published in collaboration with the Institute of Development Studies, offers a brief set of reflections to help guide decision-making within the context of collaborative research approaches. It was published in March 2021 reflecting on the COVID-19 pandemic.

Guide: AVAC Community Mapping Tool

Teaming volunteer community members and research staff, this tool helps map out points of interest where key populations live, work, and access services. It can serve as a vehicle for community participation in the research process.

Guide: AVAC Stakeholder Engagement Toolkit for HIV Prevention Trials

The Stakeholder Engagement Toolkit for HIV Prevention Trials, developed by FHI360, is a guide to engaging a wide range of key stakeholders throughout the trial lifecycle.

Guide: AVAC GPP Summary Sheets

These offer an at-a-glance look at the GPP guidelines for individuals who may not be primarily responsible for implementing GPP, but who need to understand them. They are organized according to the stages of the trial life cycle: planning, trial conduct and post-trial. Each stage outlines GPP topic areas, highlights key practices, and lists considerations for various stakeholders

Guide: AVAC Good Participatory Practice (GPP) Guidelines

Although these Good Participatory Practice (GPP) Guidelines were developed by AVAC and UNAIDS for HIV prevention trials, they are valuable to clinical trials across fields, research areas, geographies and populations. 

Guide: TB Alliance Good Participatory Practice Guidelines for TB Drug Trials (GPP-TB)

Providing guiding principles and practice standards for stakeholder engagement as an integral part of TB drug trials. Stakeholder engagement refers to any form of consultation, collaboration, and partnership put in place to enable a dialogue between all parties having a stake in a specific trial.

Published Literature: Involving young people in health research

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.

Published Report: Supporting Strong Engagement Practice in Clinical Trials

This report from Hilo Consultants Ltd outlines the key themes arising from a workshop session held in October 2020 which sought to look at ways of supporting strong practice in engagement within clinical trials.

Project Report: Understanding silenced and gendered health experiences and the impact on access

This reports on the The International AIDS Vaccine Initiative's community consultation workshop which aimed to contribute to a better understanding of gender contestations with regards to access to health and participation in biomedical research. They describe how they used body-maps, sharing circles and roadblock/hurdle mapping excercises to explore the topics of the workshop.

Project Report: Bate Papo Vacina! (Let’s get vaccinated!)

This blog style project reflection from Village Reach gives an introduction to the different aspects of their research project exploring barriers to vaccination in Mozambique.

Guide: Global Code of Conduct for Research in Resource-Poor Settings

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.

Guide: Top Tips on using Facebook

This blog piece from Parenting Science Gang in the UK gives their top tips on using Facebook for citizen science and engagement.

Project Report: The PANChSHEEEL Project

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.

Webinar: Public Engagement and Involvement in Health Research: How well are we doing?

In these videos, from a webinar delivered in July 2020 as part of the Cochrane Learning Live and International PPI Network webinar series, you will hear from speakers in the UK and South Africa who share their experiences of the positive aspects of engagment as well as putting forward the problems and issues within the field.

Project Report: Right to Food Project - In their Voices

“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.

Guide: NIHR Resource Guide for CEI in Global Health Research

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

News: International Network on Patient and Public Involvement (PPI)

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.

Literature: Planning for the social and economic impacts emerging from school-university engagement with research

In this article from the Journal of Science Communication (2015) the authors reflect on their work with teachers and students at a local school in Milton Keynes in the UK. They propose a flexible and adaptive metric to support all stakeholders with planning school engagement.

Literature: Who should decide about children’s and adolescents’ participation in 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.

Report: KEMRI | Wellcome Trust Research Programme: School Engagement Programme

The KEMRI Wellcome Trust Research Programme's School Engagement Programme (SEP) aims at promoting an interest in science and science related careers amoung students as well as promoting mutual understanding between members of the community and researchers. 

News: Community Engagement for Antimicrobial Resistance (CE4AMR) network

CE4AMR network is a global gathering of researchers and practitioners who use, or are interested in using, community engagement – in particular participatory and creative approaches – to tackle Antimicrobial Resistance (AMR) in low- and middle-income countries (LMICs)

Jeevan Shakti Mela - Festival for Lifeforce

Funfair in Nepal engages the public on the prevention and control of type 2 diabetes

Project Report: Z Factor: Using themed drama competitions to facilitate conversations on psychosis

An overview of a project in Zimbabwe engaging communities on mental health stigma and discrimination. It worked to help combat stigma and open up collaborative pathways between the traditional/faith based and medical models of mental health treatment

Participatory Visual Methods

Participatory, Action, Research: How to make your work truly participatory

Building ecosystems for sustainable engagement projects

Literature: Between Vision and Reality: A Study of Scientists’ Views on Citizen Science

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 Africa

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.  

Unpacking ‘Participation’: models, meanings and practices

Published Literature: The Polio Communication Network Contribution to the Polio Outbreak Response in Ethiopia's Somali Region, 2013-2015

This article explores the Polio Communication Network's contribution to the polio outbreak response in the Somali Region of Ethiopia from 2013 to 2015. The article explores the barriers that prevented communities in seeking immunizations and they include weak health worker interpersonal communication during immunization sessions, in accessible immunization site, fear of vaccine side effects and reactions and inconvenient timing of sessions.

Published Literature: Photovoice Ethics: Critical Reflections from Men’s Mental Health Research

Photovoice Ethics is a report and ethical guide for researchers who want to explore sensitive topics with their audiences.   

Digital Storytelling in Research: A Systematic Review

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.

Guide: Coinquiry Toolkit

Guide: Dilemmas cafés: A guide for facilitators

Guide: Performing Ethics: Using Participatory Theatre to Explore Ethical Issues in Community Based Participatory Research

Using Co-Inquiry to Study Co-Inquiry: Community-University Perspectives on Research

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).

Literature: People’s Knowledge and Participatory Action Research Book

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?”