Developing sustainable patient and public involvement in mesothelioma research: multi-method exploration with researchers, patients, carers, and patient organisations

Abstract

Plain English summary Patient and public involvement (PPI) in research means research that is done ‘with’ or ‘by’ the public, not ‘to’, ‘about’, or ‘for’ them. Involving patients, family caregivers or the public (e.g. coordinators of patient organisations) in research activities means that they contribute to how research is designed, conducted, or disseminated. However, some diseases where patients have a short prognosis after diagnosis make it harder for patients or their family members to get involved. In this project we explored the perspectives of patients, public, and researchers on how PPI could be increased and maintained in research on mesothelioma—a rare cancer of the lining of the lung or of the peritoneum caused by exposure to asbestos. We conducted an online survey with mesothelioma researchers, and they indicated a number of PPI benefits but also challenges such as finding people living with mesothelioma well enough to participate. We also conducted six online workshops and thirteen interviews with patients, family members and coordinators of mesothelioma patient organisations—these were not PPI representatives but participants in research. All participants in the project were motivated by the wish to enhance outcomes for other patients. Their understanding of PPI improved during the project and they saw a number of challenges to others becoming involved in PPI, such as its abstract nature and the use of scientific language. We recommend that researchers engage long-term with mesothelioma support groups so that they have opportunities to explain what PPI means and involve people affected by mesothelioma in research.

Keywords

• Cancer
• Mesothelioma
• Patient and public involvement
• Qualitative