Exploring the Impact of Patient and Public Involvement in a Cancer Research Setting

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.

Screening for glucose intolerance and development of a lifestyle education programme for prevention of type 2 diabetes in a population with intellectual disabilities: the STOP Diabetes research project

“…172 Service users in England contribute financially to publicly funded research, so, arguably, have a right to be involved 186,187 and can personally benefit from their involvement. 183,185,188 However, challenges to the successful involvement of service users in research include contrasting priorities, 183,189,190 understanding of research methods, 189 use of language and jargon, 189 and lack of time and resources. 183,189 The involvement of people with ID in research can pose additional challenges to those outlined above and include the need to plan ahead, allow time for effective communication and regular breaks, and ensure that meeting locations are accessible to all.…”

Evaluation of a project to engage patients in the development of a patient‐reported measure forHIVcare (the I‐Score Study)

“…Pluralist interactions are theorized as ways to foster more equality in PE and empower patients. They help uncover patients’ motivations with PE, concerns (eg, comorbidities, financial issues, etc. ), values and understandings of health, illness and care distinct from investigators’, and to value their experiential knowledge .…”

Patient and public involvement in research and the Cancer Experiences Collaborative: benefits and challenges

“…Some of these findings mirror those reported by Cotterell et al 10 who identify the personal impact upon individuals with cancer who undertake PPI involvement activity. This is extended by Thompson et al who describe the sense making process about personal illness experiences that occurs through this involvement 11. Mention is made of the possible difficulties faced by people with cancer having to readdress their own experiences through research in contexts where objectivity, rather than the subjective, is the mode of working.…”