Authors:Lieke Oldenhof (Erasmus University Rotterdam)
Rik Wehrens (Erasmus University)
Paper short abstract:
This paper examines elderly participation in a Dutch health collective. We explore how frail elderly are being socialized into participatory citizens and what consequences this has for elderly people (who’s ‘in’ and who’s ‘out’) and the reconfiguration of medical expertise.
Paper long abstract:
This paper examines a Dutch health collective that aims to connect medical researchers and elderly to better align research to the needs of frail elderly. A core theme is to stimulate elderly patients to participate in the articulation and evaluation of research. We explore how frail elderly are being socialized into participatory citizens and what consequences this has for elderly people (who's 'in' and who's 'out') and the reconfiguration of medical expertise. We used document analysis and interviews with frail elderly and their organizational representatives, doctors, and project leaders. We draw several conclusions that link to this panel (T033). 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, the redefinition of scientific knowledge -from strictly biomedical to pluralistic repertoires of knowledge- is incremental and limited in nature due to existing organizational and financial structures. This study provides valuable insights into the pragmatic participatory balancing act that comes with translating lofty policy aims into mundane practices.
Who is in, who is out? Exploring collectives in health research