Tokenism in patient engagement

Abstract

The group (i) highly valued genuine intent and relationship building as elements to combat tokenism; (ii) noted that early genuine attempts at engagement may superficially resemble tokenism as researchers build enduring and trusting relationships with patient/community partners and (iii) emphasized the importance of seeking and utilizing patient experiences throughout research. These observations may contribute to more formal methods to help researchers (and reviewers) evaluate where engagement processes sit along the 'genuine-token' continuum.

Researchers' perspectives on public involvement in health research in Singapore: The argument for a community‐based approach

“…Singapore's ageing population and the concomitant increasing demands on health services were frequently cited as reasons for seeking ways to maximize best use of resources and increase impact. Our findings highlight the ubiquity of social hierarchies in Singapore, an issue recognized as a critical challenge to meaningful PPI …”

“…Our findings highlight the ubiquity of social hierarchies in Singapore, an issue recognized as a critical challenge to meaningful PPI. 55,56 However, it may be that the socio-political context of Singapore, with its emphasis on Eastern cultural notions of collectivism, 68 offers opportunities to address this. In a context where society is promoted "above self," 69 and in which "to be a citizen is to participate in the civic affairs of the community where one lives, extending outwards to the nation," 1 emphasizing PPI as an opportunity to contribute to the wider community good may be an appropriate way forward.…”

‘Adding another spinning plate to an already busy life’.Benefits and risks in patient partner–researcher relationships: a qualitative study of patient partners’ experiences in a Canadian health research setting

“…3 Genuine, reciprocal relationships are characterised by the presence of a sense of trust, full disclosure, mutual benefit and respect, and understanding of each other's needs, capacities and goals. 1 3 13 Several accounts indicate that patient partners experience benefits and risks in the process of relationship building with researchers.…”

“…[1][2][3][4] As a practice, patient engagement in research encompasses complex and evolving processes through which patient partners are meaningfully and actively involved in governance, priority setting, conducting research and/or knowledge translation. 5 The term 'patient partner' broadly describes individuals with at least one health condition, informal caregivers (eg, family members) or members of the public (who use health services, eg, annual physical examination; vaccination), who engage in research activities with researchers.…”

Did You Hear What I Meant to Say?

“…In summarizing qualitative data from an approximately equal mixture of patients, community clinicians and researchers, the presenters emphasized the importance of genuine intent (regarding patient inclusion) and relationship building as ways to combat tokenism. 10 In any event, careful research, thoughtful reflection and communication by and among professionals interested in incorporating patients into research planning is essential. Equally essential is genuine, respectful concern and honest communication between patients and research planners at the onset and throughout a study or research program, including clear expectations of both parties.…”