Evidence Library

Title: Learning from patient involvement in a clinical study analyzing PET/CT in women with advanced breast cancer.
Author: Marianne Vogsen, Susanne Geneser, Marie Lykke Rasmussen, Mogens Hørder & Malene Grubbe Hildebrandt.
Date Published: 2020
Reference: Research Involvement and Engagement volume 6, Article number: 1
Are service users or carers authors: Yes

Abstract: In this article, we share our experiences of involving patients as research partners in a clinical study of women with incurable breast cancer. Patient recruitment and retention were higher than expected in the study, and we observed a positive change of attitude in our research team towards patient involvement in the research process. Two patients with previous experience of breast cancer were invited to be partners in the research team. They were asked to contribute in particular to participator information material and evaluation of ethical aspects of the study. The patient partners suggested major revisions to the participator information material and contributed to a more patient-friendly enrollment process. This led to a higher number of patients being recruited than we expected. In contrast, a previous study that did not have patients in the research team had enrolled fewer patients than expected. The current study also had a high number of patients (86%) who continued to attend for regular follow-up scans. We noted an initial resistance among researchers of the research team against inviting patients as partners, but we found that this gradually resolved over the course of the study. Based on the results of this study, we will be inviting patients to be our research partners in more of our future clinical studies. We recommend that other researchers also consider doing this to ensure consideration of the patient perspective in study design and implementation.

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Categories: health
Identifying topics, prioritising and commissioning
Designing research
Analysing and interpreting
Writing up and disseminating
impact on research
impact on researchers
impact of public involvement
journal article
Recruitment

Date Entered: 2020/01/23

Date Edited: 2020/01/23

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