Patient and public involvement in oesophageal cancer survivorship research

Abstract

Background Good clinical research is often conducted in close collaboration between patients, the public, and researchers. Few studies have reported the development of patient and public involvement (PPI) in research outside the United States and the United Kingdom, and for patients with more aggressive cancers. The study aimed to describe and evaluate the development of PPI in oesophageal cancer survivorship research in Sweden by the use of a framework to support the process. Methods Oesophageal cancer survivors were recruited to a PPI research collaboration at Karolinska Institutet, Sweden. The development process was supported by the use of a framework for PPI, ‘Patient and service user engagement in research’. Insights, benefits, and challenges of the process were described and discussed among the collaborators. Results The collaboration resulted in joint publications with a more patient- and family-focussed perspective. It also contributed to the development of information folders about survivorship after oesophageal cancer surgery and national conference arrangements for patients, their families, healthcare workers, and researchers. Since the PPI contributors were represented in patient organisations and care programmes, the dissemination of research results increased. Their contributions were highly valued by the researchers, but also revealed some challenges. The use of a structured framework contributed to support and facilitated the process of establishing PPI in research collaboration. Conclusions A genuine interest in establishing PPI in research and an understanding and respect for the patients’ expertise in providing a unique inside perspective was imperative for a successful collaboration. Research focus should not only be on mortality and reductions in daily life, but also on positive outcomes. Using a framework supports development and avoids pitfalls of PPI collaboration. Patient and public contribution Patient partners were equal collaborators in all aspects of the study.