Please use this identifier to cite or link to this item: https://ahro.austin.org.au/austinjspui/handle/1/31947
Title: The nature and impact of patient and public involvement in cancer prevention, screening and early detection research: A systematic review.
Austin Authors: Bergin, Rebecca J;Short, Camille E;Davis, Nikki;Marker, Julie;Dawson, Maria Teresa;Milton, Shakira;McNamara, Mairead;Druce, Paige;Milley, Kristi;Karnchanachari, Napin;Skaczkowski, Gemma 
Affiliation: Central Clinical School, Monash University, Melbourne, Australia.
Department of Rural Health, University of South Australia, Adelaide, Australia
Olivia Newton-John Cancer Wellness and Research Centre
Cancer Epidemiology Division, Cancer Council Victoria, Melbourne, Australia
Department of General Practice/Centre for Cancer Research, University of Melbourne, Melbourne, Australia.
Patient representative, Primary Care Collaborative Cancer Clinical Trials Group (PC4) Community Advisory Group, Melbourne, Australia
Cancer Voices South Australia, Adelaide, Australia.
Melbourne Centre for Behaviour Change, Melbourne School of Psychological Sciences and Melbourne School of Health Sciences, University of Melbourne, Melbourne, Australia.
Health Issues Centre, Melbourne, Australia.
Issue Date: 30-Dec-2022
Date: 2022
Publication information: Preventive Medicine 2022
Abstract: Patient and public involvement can produce high-quality, relevant research that better addresses the needs of patients and their families. This systematic review investigated the nature and impact of patient and public involvement in cancer prevention, screening and early detection research. Two patient representatives were involved as members of the review team. Databases (Medline, EMBASE, Emcare, Involve Evidence Library) were searched for English-language studies published 1995-March 2022. Titles/abstracts were screened by two reviewers independently. For eligible studies, data were extracted on study characteristics, patient and public involvement (who, when, how, and impact on research outcomes), and reporting quality using the Guidance for Reporting Involvement of Patients and the Public 2-Short Form. Of 4095 articles screened, 58 were eligible. Most research was from the United States (81%) and examined cancer screening or prevention (82%). Community members/organisations/public were the most involved (71%); fewer studies involved patients and/or carers (14%). Over half reported a high-level of involvement (i.e. partner and/or expert involvement), although this declined in later stages of the research cycle, e.g. data analysis. Common positive impacts included improved study design, research methods and recruitment, although most papers (62%) did not describe methods to determine impact. Reporting quality was sub-optimal, largely due to failure to consider challenges. This review found that high-level involvement of patients and the public in cancer prevention, screening and early detection research is feasible and has several advantages. However, improvements are needed to encourage involvement across the research cycle, and in evaluating and reporting its impact.
URI: https://ahro.austin.org.au/austinjspui/handle/1/31947
DOI: 10.1016/j.ypmed.2022.107412
ORCID: 
Journal: Preventive Medicine
Start page: 107412
PubMed URL: 36592674
ISSN: 1096-0260
Type: Journal Article
Subjects: Cancer
Cancer screening
Consumer involvement
Early diagnosis
Patient and public involvement
Primary prevention
Systematic review
Appears in Collections:Journal articles

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