20-21 September 2016

Trinity College, Oxford, UK



Community engagement is widely considered an essential feature of ethical global health research and many biomedical research efforts have taken this normative expectation to heart, integrating community engagement activities into their research practices. Despite explicit objectives related to socially responsible knowledge production, however, practices of community engagement are not inherently democratizing. Instead, engagement in global health research is sometimes used for instrumental ends - to gain community buy-in; increase consent and study enrolment, and ensure smooth research operations - rather than to achieve broader transformations in the politics and power dynamics of research. To move beyond a focus on these instrumental and normative ends, this workshop aimed to explore the political and social dimensions of engagement activities in global health research by interrogating the everyday politics and practices of engagement.

The workshop included scholars and practitioners who approach the problem of ‘engagement’ from divergent perspectives, including: (1) applied health research and bioethics, (2) science and technology studies, (3) applied and theoretical anthropology and sociology, (4) development studies, and (5) political science.

Invited papers explored the following questions, or take up the broader theme from other angles:

      • First, the workshop addressed the descriptive realities of engagement: What counts as community engagement in global health research? How do we understand public versus community’ engagement? Who are the players involved and what are their relationships like? Who is included and excluded from engagement activities? What makes engagement effective?
      • Second, a set of broader normative questions: What constitutes ethical and just global health research, and how does engagement contribute to achieving this? What are the arguments for and against engagement? What kind of engagement makes research more ‘ethical’? What kind of ethical questions emerge from engagement?
      • Third, the social and political contexts that shape (and are shaped by) engagement activities and global health research: How do engagement activities and global health research intersect with existing structures of power, local social relationships, and broader structural forces? What kinds of encounters and relationships are produced through these activities, and how do they (re)shape everyday social life?

Programme and Presentations

The structure of the workshop was based on the pre-circulation of papers, which allowed us to have more open ended discussions and develop arguments together and to create space at the workshop for all participants to receive constructive feedback and to engage in broader conversations. This format provided feedback for manuscripts which we hope to publish in an edited volume entitled Critical Issues in Community Engagement.

The full papers are hosted on a closed invitation-only location on Mesh. As these papers are expected to be works in progress, needless to say, we should all respect the authors with their original ideas and not cite or circulate them. 

The abstracts are listed within the programme below with contact details should you wish to follow up with the authors.

Day 1 Session 1: What Makes Engagement ‘Effective’ (Discussant: Dorcas Kamuya)

Community engagement for Targeted Malaria Elimination in Nong District, Savannakhet Province, Lao PDR: design, implementation and critical reflection

Bipin Adhikari, Christopher Pell, Koukeo Phommasone, Tiengkham Pongvongsa, Gisela Henriques, Paul Newton, Nicholas White, Lorenz von Seidlein, Arjen Dondorp, Nick Day, Mayfong Mayxay, Phaik Yeong Cheah

Reflections on the ethics of using participatory visual methods to engage communities in global health research

Gill Black, Alun Davies, Dalia Iskander, Mary Chambers

Involving communities in “Global mental health” research: The case for participatory action methods and community mental health competencies

Rochelle Burgess

Using participatory community engagement approaches to address severe illness in children in urban and peri-urban communities in Blantyre, Malawi

Chimwemwe Phiri, Shariffa Abdullah, Thomasena O'Byrne, Bright Molande, Chris Kamlongera, Nicola Desmond 

Day 1 Session 2: Production of Knowledge (Discussant: Rik Wehrens) 

Addressing Epistemicide to Achieve Health Equity in American Indian Communities: Applications for Global Health Research

Myra Parker, Maya Magarati and Bonnie Duran

The Possibility of Addressing Epistemic Injustice through Engaged Research Practice: Reflections on a Menstruation Related Critical Health Project

Sharli Paphitis

Contested legitimacy of regenerative vs. established biomedicine: Practices of engagement among immunostimulant-users for treating autoimmunity in contemporary Brazil

Márcio Vilar 

Legitimating the individual vis-à-vis the generalizable: the unstoppable growth of direct to consumer stem cell therapies

Saheli Datta

Day 1 Session 3&4: The Relational Dynamics of Engagement (Discussant: John Manton)

Exploring the relational dynamics of community engagement in HIV vaccine research in a peri-urban community in South Africa

Anthea Lesch and Leslie Swartz

“…not just dogs, but rabid dogs”: The effect of volunteer roles and recruitment targets on trust and distrust within communities

Mackwellings Phiri, Rodrick Sambakunsi, Kate Gooding, Nicola Desmond

Barriers to Community Engagement in a Small Hospital Based Research unit in Patan, in the Kathmandu Valley

Siân Aggett 

Who is answerable to who? Exploring the complex relationship between researchers, the community and community representative organisations in two clinical trials in Zambia

Musonda Simwinga, John Porter and Virginia Bond

Challenges of Interdisciplinary Collaboration in Community Engagement: Reflections from a Street Theatre Project at a TB Vaccine Trial Site in South Africa

Justin Dixon, Amber Abrams

What counts as community engagement in health research? views on the purpose of community engagement among stakeholders in Malawi

Deborah Nyirenda, Kate Gooding, Bertie Squire, Chiwoza Bandawe, Salla Sariola, Nicola Desmond

Engagement in Context: Practice, Research, Policy in Global and Public Health

Daniel Reeders

Partnering with Faith Communities to Address HIV Disparities in Urban America

Magdalena Szaflarski

Day 2 Session 1: Normative Frameworks (Discussant: Ariella Binik)

Towards Partnership with children, young people and parents in exploring the ethical challenges of clinical research with children: experience in Kilifi, Kenya

Katharine Wright, Vicki Marsh, Sassy Molyneux, Dorcas Kamuya

The Architecture of Community Engagement in Global Health Research

James V. Lavery & Emma Richardson

Justifying the co-production turn in research

Mark Sheehan

Day 2 Session 2: Engagement as Creating/Managing People/Groups (Discussant: Ariella Binik) 

Managing Expectations in Global Economies of Hope for Rare Disease Research

Aaro Tupasela and Zainab Afshan Sheikh

Unscripted responses: finding the unexpected in a harm reduction project evaluation in South Africa

Anna Versfeld

Community (Dis)Engagements: The LGBTQ Movement/Sector in South Africa

Kirk John Fiereck

‘Who is in and who is out?’ The politics of participation of frail elderly in Dutch healthcare

Lieke Oldenhof and Rik Wehrens

Day 2 Session 3: The Politics of Engagement (Discussant: Javier Lezaun)

Place, People and Power: Basic Concepts of People’s Lifeworld in Community Engagement for Malaria Elimination

Decha Tangseefa, Krishna Monthathip, Naruemol Tuenpakdee, Ladda Maelankiri, Myo Myo, Suphak Nosten, Andrea König, Lorenz von Seidlein, Phaik Yeong Cheah, Francois Nosten

Is “doing harm” inherent to engagement: A perspective from an LGBT-rights NGO in Malawi

Gift Trapence and Crystal Biruk

Ignorance and Knowledge: Women Sex Workers and HIV Prevention in India

Mangala Subramaniam 

Biotechnology and primary healthcare: community engagement in oncology clinical trials in Cuba

Nils Graber

Brokering Engagement: Domestic Nongovernmental Organizations and Transnational Knowledge Production

Yan Long

Religious Leaders Become Allies within the Context of the HIV Epidemic in Kenya

Evans Gichuru, Esther Adhiambo, Clifford Duncan Okoth, Salla Sariola, Monique Oliff, Eduard Sandersa, Elise M. van der Elst

Contact Us

General Enquiries: communityengagement2016@gmail.com 

Closed discussion group

Salla Sariola, Senior Lecturer, Sociology, University of Turku, Finland & Senior Researcher, Ethox Centre, University of Oxford, UK: salla.sariola@ethox.ox.ac.uk

Lindsey Reynolds, Assistant Professor, Population Studies and Training Center, Brown University, USA: lindsey_reynolds@brown.edu

We welcome your feedback on the model and content of the conference.