Evidence Library

Abstract:

Aim: This paper reviews the development of public involvement in health research; describes three research studies where breast cancer activists became actively involved and outlines a model of lay involvement in research based on this analysis.

Methods used: In addition to reviewing the literature, the authors interviewed a range of stakeholders in order to understand the obstacles, processes and benefits of public involvement in research. These stakeholders were all involved in environmental breast cancer research in three areas of the USA.

Findings/recommendations: The authors suggest that the potential challenges to public involvement in research fall into three categories: relationship issues, methodological issues and social, political and cultural issues.

They describe how women affected by breast cancer had an impact on research commissioning through:

• using political connections and activism to campaign for and secure government funding for research
• influencing the research agenda
• influencing how the research was carried out.

The authors describe the impact on activists:

• their undertanding of environmental causation and research methods increased
• their feelings about researchers changed from fear to respect.

Both activists and researchers described a feeling of empowerment that resulted from the collaboration. Both groups felt that public involvement pushed the research forward more quickly.

The authors reflect: "Public involvement created an articulated value structure that made research relevant to women with breast cancer." They argue that public involvement reduces distrust of science on the part of the public and increases public accountability.

They go on to describe a model for public involvement in research, which covers principles (for example openness), tasks (for example training activists) and structure (for example lay people in positions of governance).

External link: The following links will take you to information on this entry on an external website. INVOLVE is not responsible for the content or the reliability of the external websites. Link to PubMed abstract

Related entry: none currently available

Categories: health
public health
Identifying topics, prioritising and commissioning
Designing research
impact on funding/commissioning
impact on research
impact on service users involved
impact on researchers
impact on implementation and change
nature and extent of public involvement in research
impact of public involvement
reflecting on public involvement in research
journal article
Implementation and change

Date Entered: 2007/02/20

Date Edited: 2012/11/21