Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2014 Jan;24(1):46-54.
doi: 10.1177/1049732313514482. Epub 2013 Nov 25.

Exploring the impact of patient and public involvement in a cancer research setting

Jill Thompson  1 , Paul Bissell, Cindy L Cooper, Chris J Armitage, Rosemary Barber
Affiliations

Exploring the impact of patient and public involvement in a cancer research setting

Jill Thompson et al. Qual Health Res. 2014 Jan.

Abstract

An enduring theme in the literature exploring patient and public involvement (PPI) in research has been the focus on evaluating impact, defined usually in terms of participants' practical contribution to enhancing research processes. By contrast, there has been less emphasis on the perspectives and experiences of those involved in PPI. Drawing on qualitative data with people involved in the National Cancer Research Network in the United Kingdom, we report on what motivated participants to get involved and their experiences of involvement in this setting. We highlight how those involved in PPI often espoused the notion of the "good citizen," with PPI in research being a natural extension of their wider civic interests. However, our findings also highlight how PPI was an important resource, utilized by participants to make sense of living with chronic illness. We suggest that PPI in research also offers spaces for the reconfiguration of self and identity.

Keywords: illness and disease, experiences; interviews; lay concepts and practices; research participation.

PubMed Disclaimer

Conflict of interest statement

Declaration of Conflicting Interests: The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

References

    1. Barnes M., Harrison E., Murray L. (2012). Ageing activists: Who gets involved in older people’s forums? Ageing & Society, 32, 261–280. doi:10.1017/S0144686X11000328 - DOI
    1. Barnes M., Newman J., Sullivan H. (2006). Discursive arenas: Deliberation and the constitution of identity in public participation at a local level. Social Movement Studies, 5(3), 193–207. doi:10.1080/14742830600991487 - DOI
    1. Brett J., Staniszewska S., Mockford C., Herron-Marx S., Huges J., Tysall C., Suleman R. (2012). Mapping the impact of patient and public involvement on health and social care research: A systematic review. Health Expectations. doi:10.1111/j.1369-7625.2012.00795.x - DOI - PMC - PubMed
    1. Bury M. (2001). Illness narratives: Fact or fiction? Sociology of Health & Illness, 23(3), 263–285. doi:10.1111/1467-9566.00252 - DOI
    1. Campbell K. (2005). Theorizing the authentic: Identity, engagement and public space. Administration and Society, 36(6), 688–705. doi:10.1177/0095399704270582 - DOI

Publication types