Surgical Care Science, Department of Molecular Medicine and Surgery, Karolinska Institutet, Stockholm, Sweden.
Department of Anaesthesiology and Intensive Care, Södersjukhuset, Stockholm, Sweden.
Acta Oncol. 2022 Mar;61(3):371-377. doi: 10.1080/0284186X.2021.2016950. Epub 2021 Dec 20.
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.
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.
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.
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 partners were equal collaborators in all aspects of the study.
良好的临床研究通常是在患者、公众和研究人员之间密切合作下进行的。很少有研究报告过在美国和英国以外的地方，以及针对侵袭性更强的癌症患者开展患者和公众参与（PPI）的情况。本研究旨在通过使用一个支持研究过程的框架，描述和评估瑞典食管癌生存研究中 PPI 的发展情况。
在瑞典卡罗林斯卡研究所，招募了食管癌幸存者参与 PPI 研究合作。该过程得到了“患者和服务用户参与研究”的 PPI 框架的支持。合作者们对该过程的见解、收益和挑战进行了描述和讨论。
该合作促成了具有更以患者和家庭为中心视角的联合出版物。它还为食管癌手术后生存信息手册的编写和患者、家属、医护人员和研究人员的全国会议安排做出了贡献。由于 PPI 贡献者代表了患者组织和护理计划，研究结果的传播得到了增加。他们的贡献受到研究人员的高度重视，但也揭示了一些挑战。使用结构化框架有助于支持和促进 PPI 在研究合作中的建立。
对在研究中建立 PPI 的真诚兴趣，以及对患者提供独特内部视角的专业知识的理解和尊重，对于成功的合作至关重要。研究重点不仅应放在死亡率和日常生活减少上，还应放在积极的结果上。使用框架支持发展并避免 PPI 合作的陷阱。
患者伙伴在研究的各个方面都是平等的合作者。
