The National Institute for Health and Care Research (NIHR) is the UK’s largest funder of health and care research and provides the people, facilities and technology that enables research to thrive. They work with a range of stakeholders to deliver and enable world-class research that transforms people's lives, promotes economic growth and advances science.
NIHR funds high quality global health research that directly addresses the diverse health needs of people in low and middle income countries (LMICs). We invest in applied health research relevant to the unmet needs of LMIC communities, health system priorities and the evolving global burden of disease. Since its establishment in 2016, NIHR’s Global Health research portfolio has continued to develop at pace, underpinned by a strong commitment by all stakeholders to embed meaningful community engagement and involvement (CEI) across the full spectrum of this funding programme.
NIHR's CEI vision is that all global health research is undertaken in active partnership with the communities who are most likely to be affected by the research outcomes so as to improve its reach, quality and impact. Enabling communities, patients, carers and especially vulnerable, underserved and marginalised groups to have a genuine voice in global health research - from the funding process to study design, delivery and dissemination - is essential to achieving our ambition for long-term research impact and changing lives.
To help NIHR gain more insight on CEI in low- and middle-income countries (LMICs) and connect the organisation to the wider community engagement network, they have created the NIHR Global Health CEI Advisory Network.
NIHR Global Health Community Engagement & Involvement (CEI) Advisory Network
The NIHR Global Health CEI Advisory Network is an invited group of academics, researchers, patients, carers and members of the public with knowledge and experience of public involvement in research and community engagement in LMICs. The purpose of the Network is: to share knowledge and experience around CEI; to provide advice on NIHR’s CEI strategy and operation; and to act as enablers to support the NIHR with connecting to the wider research community.
Since its creation in July 2019 the NIHR Global Health CEI Advisory Network, as a global collaborative shared learning space, has played an important role in supporting the development of CEI in NIHR’s global health work. The Network members include representation from charities and universities based both in the Global North and the Global South. All members share an interest in CEI but other research interests range from bioethics to mental health to social anthropology.
For a full list of the Advisory Network members, please click HERE
Vision for the future
The Advisory Network has a hub on Mesh including a virtual space to host discussions and this area to share learning and resources. They aim to highlight CEI papers and resources that have been created and written by Network members and will share their learning with the wider Mesh community.
If you would like to know more information about the Advisory Network, please contact Doreen Tembo ceiglobalhealth@nihr.ac.uk
Resources
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Published in Frontiers in Public Health in January 2022, this article asks what "good" engagement looks like and highlights the importance, for some research, of investing in and developing long term relationships with communities, perhaps beyond the life cycle of a project; this was regarded as crucial to the development of trust, addressing power differentials and ensuring the legacy of the research was of benefit to the community. |
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This article published in BMJ Open in October 2021, the authors conclude that COVID-19 has highlighted the need for contingency planning and flexibility in CEI. The redesigning and adopting of remote methods has come with both advantages and disadvantages, and required new skills, access to technology, funding, reliable services and enthusiasm from stakeholders |
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GUIDE: What does it mean to take a 'leave no one behind' approach to CEI in global health research? In this final guide of the series, NIHR bring together CEI thought leaders to reflect on their own practice of CEI and what it has meant to their work to integrate an 'leave no one behind' perspective – a central principle of NIHR's CEI vision. Topics covered include how you can be inclusive without being tokenistic, as well as whose knowledge ends up ‘counting’ in global health – referring here to indigenous knowledge and perspectives. The 'Leave no one behind' approach to CEI in global health research guide is also available as a PDF (open PDF), and you can listen to the authors discuss the topic in an episode of the NIHR podcast |
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GUIDE: Ethical dimensions of community engagement and involvement in global health research This second in a three-part series of learning resources, from the UK's NIHR published in collaboration with the Institute of Development Studies, discusses the ethical dimensions to consider when engaging communities and involving patients in global health research. It was published in July 2021 reflecting on the COVID-19 pandemic.Read this blog piece from Noni Mumba, Head of Engagement at the KEMRI Wellcome Trust Research Programme (KWTRP) in Kenya, where she writes about how she overcame some of the ethical challenges arising during the COVID-19 pandemic to be able to continue her work connecting with the community |
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The first in a three-part series, this learning resource offers a brief set of reflections to help guide decision-making within the context of collaborative research approaches. This text reflects a series of conversations between experienced CEI practitioners (including NIHR's CEI Advisory Network, NIHR staff and award holders) over 2020 |
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Published in BMJ in February 2021, this article argues that small changes as well as larger system-wide changes can strengthen citizens’ contribution to knowledge in health research |
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WEBSITE: NIHR's Learning for Involvement This website is dedicated to learning and development for public involvement in health and social care research: what’s it all about and how to do it well. It brings public involvement information and resources (such as guidance, websites, videos, articles and blogs) and training together in one place |
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GUIDE: A Resource Guide for Community Engagement and Involvement in Global Health Research Developed for the NIHR Research and Innovation for Global Health Transformation (RIGHT) programme in collaboration with Erica Nelson, one of the Advisory Network members |
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NETWORK: International Patient and Public Involvement (PPI) Network Network members collaborate with the International PPI Network, who have developed a Cochrane Learning Live webinar series dedicated to the topic of PPI in health and social care research. Previous topics include, building trust and sharing power for co-creation in Aboriginal health research and stakeholder involvement in evidence synthesis |
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PRESENTATION SLIDES [PDF]: The policy making process and pathway to impact At a previous Advisory Network meeting, Professor Pamela Abbott (Director of the Centre for Global Development and Professor in the School of Education, University of Aberdeen) talked about the policy making process in LMICs. Pamela discussed how understanding the policy making process can help researchers to think more carefully about how they can have a pathway to impact. It provides useful guidance for researchers on how to influence policy makers |
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PRESENTATION SLIDES [PDF]: Case studies from members of the network - AMARI (African Mental Health Initiative) At a past Advisory Network meeting, Dr Rosemary Musesengwa (Postdoctoral researcher, Global Initiative in Neuropsychiatric GenEthics- NeuroGenE at the Department of Psychiatry, Oxford University and with the Wellcome Centre for Ethics & Humanities) provided a background summary on the AMARI (African Mental Health Research Initiative) project and the community engagement activities. Recently a documentary focusing on mental health was produced through AMARI, and production involved various members of the community. Rosemary raises some of the challenges and ethical concerns they encountered during filming and the review process |
- Professor Pamela Abbott - Director of the Centre for Global Development and Professor in the School of Education, University of Aberdeen
- Noor Akbar, Programme Manager PPIE, NIHR Coordinating Centre
- Sarah Betts, Programme Manager PPIE, NIHR Coordinating Centre
- Dr Rochelle Burgess - Associate Professor in Global Health at UCL
- Dr Mary Chambers - Head of Public Engagement with Science, Oxford University Clinical Research Unit (OUCRU)
- Dr Phaik Yeong Cheah - Associate Professor of Oxford University and Head of the Department of Bioethics and Engagement (based in Bangkok at the Wellcome Programme)
- Professor Moses Chimbari - Research Professor at University of KwaZulu-Natal and co-deputy Director of Tacking Infections to Benefit Africa (TIBA) project
- Sana Contractor -Independent Researcher, India
- Alero Dabor - Senior Programme Manager, PPIE, NIHR Coordinating Centre
- Dr Walter Flores - Principal Adviser at Centre for the Study of Equity and Governance in Health Systems (CEGSS) and Researcher at the Accountability Research Centre (ARC)
- Razina Hussain - Research Manager, PPIE, NIHR Coordinating Centre
- Tracy Jackson - Senior Research Fellow, Patient and Public Involvement Lead at University of Edinburgh
- Dr Dorcas Kamuya - Researcher in Ethics and Community Engagement, KEMRI-Wellcome Trust Research Programme
- Dr Shelley Lees - Associate Professor in Anthropology of Gender, Violence and HIV, London School of Hygiene and Tropical Medicine
- Saumu Lwembe - Senior Programme Manager, Patient and Public Involvement and Engagement (PPIE), NIHR Coordinating Centre
- Dr Susan Moloney - Associate Researcher, Newcastle University
- Noni Mumba - Head of Community Engagement, KEMRI-Wellcome Trust Research Programme
- Dr Rosemary Musesengwa - Postdoctoral researcher with the Global Initiative in Neuropsychiatric GenEthics- NeuroGenE at the Department of Psychiatry, Oxford University and with the Wellcome Centre for Ethics & Humanities
- Dr Erica Nelson - Research Fellow at London School of Hygiene and Tropical Medicine and Research Fellow at the Institute of Development Studies (IDS)
- Charlotte Seeley-Musgrave - Global health research officer, Global health research partnerships, DHSC
- Hasara Nuwangi - Postgraduate student
- Gochi Nwulu, Senior Programme Manager, Global Health, NIHR
- Linda Parton - Public contributor
- Dr Bridget Pratt - Ethics researcher at Queensland Bioethics Centre, Australian Catholic University
- Professor Dame Louise Robinson - Professor of Primary Care and Ageing, Newcastle University
- Heidi Surridge - Research Manager, PPI, NIHR Coordinating Centre
- Doreen Tembo - Senior Research Manager, Global Health, NIHR Coordinating Centre
- Sanjog Thakuri - Freelancer Consultant on Child Participation, Governance and Professional and Organizational Development. UN Global Youth Advocate.
- Dr Robin Vincent - Freelance Learning and Evaluation Consultant
NIHR CEI Working Group
The Advisory Network provides advice to and supports the work of the NIHR CEI Working Group - a group that brings together the PPI leads from different NIHR coordinating centres and includes representation from the NIHR Global Health Research programme. Members include:
- Noor Akbar - Programme Manager, Patient and Public Involvement and Engagement (PPIE), NIHR Coordinating Centre
- Sarah Betts, Programme Manager PPIE, NIHR Coordinating Centre
- Razina Hussain - Research Manager, PPIE, NIHR Coordinating Centre
- Saumu Lwembe - Senior Programme Manager, Patient and Public Involvement and Engagement (PPIE), NIHR Coordinating Centre
- Dr Helen Smith - Assistant Director, Global Health, NIHR Academy
- Heidi Surridge - Research Manager, PPI, NIHR Coordinating Centre
- Doreen Tembo - Senior Research Manager, Global health, NIHR Coordinating Centre
- Elizabeth Winterton- Research Manager, Global health, NIHR Coordinating Centre
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