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 Tupasela1 and Zainab Afshan Sheikh [1]

1. Section for Health Services Research, Department of Public Health, University of Copenhagen


The extension of research networks to encompass broader and more far-reaching global collaborators and partners has become a mainstay of conducting global health research (Biehl and Petryna, 2013). In this paper we address research networks in the field of rare genetic diseases, where efforts to involve families and communities in both low and high income countries in order to collect human biological tissue are increasing. How do these efforts interact with the lives of donor families? How are the local communities managed? Based on ethnographic interviews, we compare and contrast whether and how researchers in Pakistan, Finland and Denmark facilitate research on rare diseases through engaging donors. We argue that the tacit, practical and explicit work around donor and family hopes and expectations are an important conduit through which patients, their families and the research they participate in are managed. Furthermore, we show how research goals and engagement practices are multiple and multi-faceted, whereby seeing engagement as either empowering or a type of buy-in is problematic.

According to Borup et al. (2006: 285-286), “expectations can be seen to be fundamentally ‘generative’, they guide activities, provide structure and legitimation, attract interest and foster investment. They give definition to roles, clarify duties, offer some shared shape of what to expect and how to prepare for opportunities and risks.” At the same time increased attention has been paid to the power relations between researchers and research subjects whereby practices of engagement are seen to play an important role in empowering patients. The Centers for Disease Control and Prevention (CDC), for example, sees the development of strategies for community engagement as central in improving public health, as well as improve the quality and applicability of population research (Haldeman et al., 2014). Different countries and institutions use different approaches to their engagement strategies with regard to the general public, as well as the research population from which they collect samples and data (Cañada et al., 2015; Tupasela et al., 2015).

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

Anna Versfeld [1]

1. University of Cape Town, South Africa


The importance of community involvement in public health research processes is well established. The literature is, however, less forthcoming about processes of community inclusion in public health project implementation, especially when it comes to projects focusing on key populations. The Step Up project is the first multi-city harm reduction service provision project for people who inject drugs (PWID) in South Africa. Since inception, the Step Up Project has made concerted efforts to work with and alongside people who actively identify as PWID. This paper outlines two surprising features relation to project-beneficiary dynamics that emerged in a qualitative project evaluation. The first was that project “beneficiaries” comfortably expressed criticisms of both themselves and the project, and freely noted when their behaviour contradicted project ideals. This is distinctly different to anthropological accounts that have noted that beneficiaries of harm reduction programmes often position themselves as ethical actors by voicing harm reduction discourses while expressing resistance through overtly contradicting the tenets of these discourses in their actions. The second was the extent to which engagement with the project was reported to be fostering a renewed sense of personhood and right to exist in the world. This was particularly marked for participants in the CAGs. These unexpected findings are, we suggest, partly related to the forms of community engagement exhibited by the project implementers, including multiple modes of care, consistent CAG processes, and a focus on human rights.

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

Kirk John Fiereck [1]

1. University of Pennsylvania, School of Arts and Sciences


Scholars, globally, have noted the trends towards professionalization within LGBTQ social movements and specifically their partial incorporation within neoliberal economic and cultural rationalities in western contexts. Beyond these processes occurring in locales known as Northern, this paper argues that similar, yet distinct, processes are occurring in Southern contexts and examines these transformations as they are occurring in South Africa. The analysis will be based on more than three years of the author’s ethnographic field research that examines the present-day constitution of sexual politics around the question of “community” as it was addressed by a number of global health- and LGBTQ-focused NGOs in Africa’s most economically prosperous nation and the world’s largest HIV epidemic by examining material. Most LGBTQ South Africans who work at the intersection of community advocacy and global health initiatives describe that their work takes place in, and is constitutive of, what they refer to as the “LGBT sector” and/or “health sector.” This essay will explore a number of ethnographic sources, including key informant interviews and participant-observation data collected among individuals from NGOs that work throughout the southern African region. The analysis will chart the political and cultural processes that that translate what was previously conceived of as an LGBTQ “community” or “social movement” into a market-based idiom: namely, what is now considered widely to be a “sector.” Such displacements raise questions regarding the Movement/Community/Sector’s simultaneous incorporation and marginalization within various flows of economic and cultural circulation and the implications of new forms of human and biocaptial that are emerging in the global South.

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

Lieke Oldenhof1 and Rik Wehrens [1]

1. Institute of Health Policy and Management, Erasmus University, Netherlands


Community engagement is not only an essential topic in ‘global’ health research, but also an important domain of health research in general. This paper provides a critical analysis of the mundane practices of engagement in a Dutch health collective that aims to connect medical researchers and elderly to better align research to the needs of frail elderly (i.e. elderly with multiple, often chronic conditions). Many governments in western countries embrace patient engagement as a community ideal. A core underlying assumption of engagement initiatives is an active and vocally able patient. However, not all patients align with this image. For example, frail elderly constitute a marginalized group that is often overlooked in engagement initiatives. To compensate for this, the National Program for Elderly Care (NPO) adopted as one of its core themes participation of elderly people in the articulation and evaluation of research. Empirically, our paper analyses the problems of engagement in this program in two ways: as experienced by elderly themselves and by looking at the broader social and political contexts of engagement. For this purpose, we conducted interviews with frail elderly and their organizational representatives, doctors and project leaders, in order to capture the descriptive realities and everyday politics of engagement. In order to understand the broader contexts of engagement, we analysed policy documents and minutes of meetings.

On the basis of our analysis, we draw three main conclusions. First, despite ideals of democratic participation, practices of in- and exclusion are pervasive. Especially academically and verbally ‘able’ elderly (‘the chattering classes’) initially take centre stage, whereas elderly with underprivileged social backgrounds feel less inclined to participate or are discouraged during the process of participation. Second, socialization of the ‘less able’ elderly does take place via coaching, guidelines and reflective meetings with the aim of including the emic perspective of the frail elderly. This creates tensions however: while it shapes elderly people into ‘socially acceptable’ participants in the eyes of the medical world, it reduces the particularities of the original elderly perspective. Third, we show how dominant (biomedical) definitions of good research are materially embedded in existing power structures (i.e. academic positions, review procedures and distribution of research money). Nevertheless, frail elderly did exert agency by (partially) reshaping the definition of valuable scientific research beyond a strictly biomedical repertoire. This was done by prioritizing welfare research over medical-technical topics and by emphasizing the need for practical tools to improve elderly life in the here and now rather than long-term, fundamental research. 
Theoretically, we analyse these conclusions with the use of various concepts inspired by critical sociology that allow us to grasp the inherent tensions and politics of engagement. By using the concept of governmentality, we are able to understand how elderly are being responsibilized and empowered as ‘good participants’. Empowerment, however, is also disciplining elderly to behave in ‘socially acceptable’ ways in a highly professionalized, medical habitus. Through the concept of ‘social capital’, we explain why frail elderly with underprivileged backgrounds have difficulties to become and stay engaged, while vital and highly educated elderly are better able to voice their perspective. Social capital allows for micro-advantages in the ‘participation game’ whilst the lack of social capital leads to various micro-disadvantages. The mechanisms of in- and exclusion and related power dynamics we have identified in this research have implications that are also relevant for wider debates in global health. One implication is that our study shows some of the more mundane and subtle aspects of in- and exclusion practices, in contrast to more explicitly manifest examples of exclusion in global health. Another implication is that our study shows how the politics and ethics of community engagement play out in a high income country like the Netherlands. The ways in which a traditionally marginalized group such as the elderly have been able to exert their agency in this program can offer valuable new insights related to the empowerment of marginalized groups in other global health contexts.