Collaborating with cancer patients and informal caregivers in a European study on quality of life: protocol to embed [PPI]... 2024 Engelaar et al

Full title: Collaborating with cancer patients and informal caregivers in a European study on quality of life: protocol to embed patient and public involvement within the EUonQoL project

Abstract

Background

Patient and public involvement (PPI) has become an essential part of health research. There is a need for genuine involvement in order to ensure that research is relevant to patients. This can then improve the quality, relevance, and impact of health research, while at the same time reducing wasted research and in doing so bringing science and society closer together. Despite the increasing attention for this involvement, it is not yet common practice to report on proposed activities. An article reporting planned PPI could provide guidance and inspiration for the wider academic community in future activities. Therefore, this current article aims to describe the way in which PPI principles are incorporated in the research project called “Quality of Life in Oncology: measuring what matters for cancer patients and survivors in Europe (EUonQoL).” This project aims to develop a new set of questionnaires to enable cancer patients to assess their quality of life, entitled the EUonQoL-Kit.

Methods
The first step is to recruit cancer patients and their informal caregivers as co-researchers in order to train them to collaborate with the researchers. Based on their skills and preferences, they are then assigned to several of the project’s work packages. Their individual roles, tasks, and responsibilities regarding the work packages, to which they have been assigned, are evaluated and adapted when necessary. The impact of their involvement is evaluated by both the researchers and co-researchers.

Discussion
PPI is a complex and dynamic process. As such, the overall structure of the research may be defined while at the same time leaving room for certain aspects to be filled in later. Our research is, we believe, relevant as co-researcher involvement in such a large European project as EUonQoL is a new development.

Plain English summary
Patient and public involvement (PPI) is important in health research. This increases the relevance, quality, and impact of research, reduces wasted research, and promotes collaboration between science and society. There is growing attention for this involvement, but it is not yet common practice to report on planned PPI activities. This article addresses this gap by describing how its principles are integrated into the project called “Quality of Life in Oncology: measuring what matters for cancer patients and survivors in Europe (EUonQoL)”, a study that aims to develop a new set of quality of life questionnaires for cancer patients. The methods involve recruiting and training co-researchers who collaborate with the researchers. Co-researchers perform tasks based on their skills and preferences. Their involvement is constantly evaluated with both researchers and co-researchers and adjusted if necessary. Continuous support is provided, and evaluations are conducted to assess the process and impact of co-researcher involvement. PPI is a complex and dynamic process. Therefore, this article outlines the overall research structure while leaving room for later adjustments. The intention of publishing the proposed activities is to contribute insights into the research field and inform future delivery of PPI. Our PPI activities should provide a meaningful contribution to the research field as co-researcher involvement in such a large European project is new.

Open access, https://researchinvolvement.biomedcentral.com/articles/10.1186/s40900-024-00597-9