Gaps between needs of patient and public involvement and interests of researchers on pancreatic cancer

Mathilde Resell; Morten Stranden; Gunnar Qvigstad; Duan Chen; Chun-Mei Zhao

doi:10.1016/j.pec.2023.108125

Gaps between needs of patient and public involvement and interests of researchers on pancreatic cancer

Patient Educ Couns. 2024 Mar:120:108125. doi: 10.1016/j.pec.2023.108125. Epub 2023 Dec 20.

Authors

Mathilde Resell¹, Morten Stranden², Gunnar Qvigstad³, Duan Chen⁴, Chun-Mei Zhao⁴

Affiliations

¹ Department of Clinical and Molecular Medicine, Faculty of Medicine and Health Sciences, Norwegian University of Science and Technology, Trondheim, Norway. Electronic address: Mathilde.resell@ntnu.no.
² Faculty of Medicine and Health Sciences Administration, Norwegian University of Science and Technology, Trondheim, Norway.
³ Department of Gastroenterology, St Olav's University Hospital, Trondheim, Norway.
⁴ Department of Clinical and Molecular Medicine, Faculty of Medicine and Health Sciences, Norwegian University of Science and Technology, Trondheim, Norway.

PMID: 38176082
DOI: 10.1016/j.pec.2023.108125

Abstract

Objective: Identify whether there were gaps between needs of end-users and interests of researchers focusing on pancreatic cancer.

Methods: A questionnaire for end-users (patients, close family, others) and researchers was developed to measure value from the perspective of different stakeholder groups. Two separate literature analyses were conducted to assess the prevalence and impact of patient and public involvement (PPI).

Results: Significant gaps were found between end-users and researchers in valuing basic research (15 vs 25 points, p = 0.005) and treatment (36 vs. 26 points, p = 0.015), but not in early diagnosis, risk factors, or quality of life. PPI was absent from the top 100 cited publications on pancreatic cancer research and was featured in 0.1% of all studies within the field.

Conclusions: Gaps existed between needs of end-users and interests of researchers on basic research and treatment. PPI constituted an insignificant part of the overall pancreatic cancer research literature and had negligible impact in terms of citations.

Practical implications: To help close the gaps, PPI should be incorporated throughout the research process. The impact of PPI can be enhanced by prestigious journals in consideration of journal policies and encouragements and by dissemination at academic conferences.

Keywords: End-users; Pancreatic cancer; Patient and public involvement; Value chain.

MeSH terms

Humans
Pancreatic Neoplasms* / therapy
Patient Participation
Quality of Life*
Research Personnel
Risk Factors