Facilitating non-tokenistic user involvement in research

Abstract

Background With the increase in user activism in the Western societies in recent years, there has also been an increase in promoting user involvement in research. Hence, is necessary to address the danger of tokenism, a false appearance of inclusiveness, in user involvement, as well as to explore methods for promoting active user involvement. Using a Norwegian research project on the rehabilitation processes following traumatic injuries organised via user involvement, this study reviews ways in which to avoid tokenism in user involvement and how to instead stimulate active user engagement in research. Methods The analysis employs an ethnographic approach using participant observations from real life settings involving user involvement during the five years research process. The empirical material includes 472 pages of transcribed audio recordings from meetings between researchers and collaborators discussing personal experiences with traumatic injuries, and 340 pages of documents on the project’s involvement process. This empirical material was examined by thematic analysis, involving processes such as decontextualising, flagging and re-contextualising. Results Two main categories of facilitation emerged as promoting non-tokenistic, active user involvement in research: 1) defining the collaborative arena, (i.e. the setting of collaboration) which entails preparing for participation and promoting active involvement, and 2) designing for research counselling, which involves gathering user perspectives and valuing criticism. Taking into account the existing asymmetric relationships between researchers and collaborators, enabling more evenly distributed power dynamics also proved to be essential. Conclusions To achieve active participation that is relevant to the collaborators, two interconnected yet analytically independent themes should be considered: the collaborative arena and counselling. Both prove crucial for curbing power imbalance and stimulating the involvement process. The study indicates that non-tokenistic involvement should be anchored in the respect for participants and their ability to make contributions. This analysis can help researchers who seek active engagement and non-tokenistic involvement in research to find methods for facilitating and organising participation in their fields.

A critical occupational perspective on user engagement of older adults in an assisted living facility in technology research over three years

“…In the past decade, user participation in research has increased (Romsland et al, 2019). Currently, Norwegian policy regarding research and innovation recommends engaging users in the cocreation of knowledge, and some research grants in Norway and many other countries even require user engagement.…”

“…has been described as tokenistic user involvement (Romsland et al, 2019), meaning that research participants have no real influence because their abilities are underestimated, their tasks condescending, or their different backgrounds responsible for a lack of mutual understanding (Morrison & Dearden, 2013). The opposite of tokenistic user engagement is meaningful engagement, which refers to participants' contributions that are made valid and understandable (Morrison & Dearden, 2013;Romsland et al, 2019). Extended over 3-years, user engagement and reciprocal communication can be understood to constitute user engagement for the cocreation of knowledge (Askheim, 2016).…”

Designing a tool to support patient and public involvement in research projects: the Involvement Matrix

“…From the perspective of patients and public, differences in educational levels and research expertise could result in disappointment, frustration and powerlessness. Another challenge in PPI is the issue of tokenism, with only symbolic efforts to involve end-users, without true openness to the ideas of others [8,16]. Finally, a common finding is the inconsistency of involvement in the various stages of the research process.…”

Between funder requirements and ‘jobbing scientists’: the evolution of patient and public involvement in a mental health biomedical research centre - a qualitative study

“…Resistance to power sharing is common, and scientific knowledge is routinely privileged over experiential and other forms of knowledge [11][12][13][14]. In this context there are indications that involvement practice remains tokenistic [15] and underpinned by a technocratic rather than a democratic rationale. This means that involvement of patients and the public is researcher rather than user-led and is sought in the hope that it may improve research quality and treatment cost efficiency rather than challenge existing power structures and engage citizens in decision making [16,17].…”