A qualitative study of public involvement in the national cancer research network.

Contemporary health policy places increasing emphasis on involving the
public In healthcare and health research. This thesis Is an empirical
Investigation of public Involvement in the National Cancer Research Network
(NCRN) In England, and draws upon emergent themes in the literature
relating to quality, epistemic, democratic, accountability and empowerment
claims for public Involvement In research, as well as Habermas' concepts of
system and lifeworld.
Research alms were to explore professional and public accounts of
motivations and rational isations for public Involvement In research, consider
how public (lifeworld) voices may be Integrated into health research (system)
spaces and, explore what counts as credible expertise In health research
settings. A qualitative approach was adopted and data were collected from
selected case studies (a local research panel and national Clinical Studies
Groups within the NCRN). The methods included participant and nonparticipant
observations, Interviews with group members (professional and
public) and documentary analysis.
Analysis of data revealed an inherent ambiguity In relation to public
involvement In health research. Involvement served multiple purposes for
the public, Including the provision of social/support functions and
opportunities to reconstruct illness/caring Identities, through the
development of research skills and active roles within health research. Case
studies revealed Inherent tensions as the Involved public and professionals
attempted to demarcate their roles and Importantly the foundations of their
credibility within the group. The identification of professional and public
members' attempts to prevent the Integration of the public voice casts doubt
on possible empowerment claims. Furthermore, the observation that many
public members were highly deferential to certified expertise calls Into
question their ability to bring a different perspective to research. Ultimately,
public involvement In health research may be less the potential to re-couple
system and lifeworld but rather a further colonisation of the public lifeworld
by professional system knowledge and expertise.