Patient and public involvement in cancer research: A scoping review.

INTRODUCTION: Patient and public involvement (PPI) in research emphasizes the importance of doing research with, rather than for people with lived health/illness experience(s). The purpose of this scoping review is to investigate the breadth and depth of scientific literature on PPI in cancer research and to identify how is PPI applied and reported in cancer research. METHODS: We searched MEDLINE, Embase, CINAHL, and PsycInfo up to March 2022. All titles/abstracts and full-text results were screened by two reviewers. Data were analyzed and are presented in both narrative and tabular format. RESULTS: We screened 22,009 titles/abstract, reviewed 375 full-text articles, of which 101 studies were included in this review. 66 papers applied PPI; 35 used co-design methodologies. PPI in cancer research in published research has increased steadily since 2015 and often includes those with a past diagnosis of cancer or relatives/informal caregivers. The most common applied methods were workshops or interviews. PPI was generally used at the level of consultation/advisor and occurred mainly in early stages of research. Costs related to PPI were mentioned in 25 papers and four papers described training provided for PPI. CONCLUSIONS: Results of our review demonstrate the nature and extent of PPI expansion in cancer research. Researchers and research organizations entering the fray of PPI should consider planning and reporting elements such as the stage, level, and role type of PPI, as well as methods and strategies put in place to assure diversity. Furthermore, a thorough evaluation of whether all these elements meet the stated PPI purpose will help to grasp its impact on research outcomes. PATIENT OR PUBLIC CONTRIBUTION: Two patients participated in the stakeholder consultation as part of the scoping review methodology, contributed to the discussion on refining the results, and critically reviewed the manuscript. Both are co-authors of this manuscript.

Patient-reported experiences of cancer care related to the COVID-19 pandemic in Switzerland.

PURPOSE: This study aims to describe the experience of Swiss oncological patients during the COVID-19 pandemic. METHODS: A national multi-center study including five hospitals covering the three main language regions of Switzerland was conducted between March and July 2021. Patients with melanoma, breast, lung, or colon cancer receiving active systemic anti-cancer treatment at the time of the COVID-19 pandemic were included. We conducted semi-structured telephone or onsite interviews alongside the administration of distress and resilience-validated questionnaires. Thematic analysis was performed for the qualitative data and descriptive statistics for the quantitative data. RESULTS: Sixty-two cancer patients with a mean age of 61 (SD=14) (58% female) were interviewed. Based on the interviews, we identified that the experience of having cancer during the COVID-19 pandemic was related to five dimensions: psychological, social, support, healthcare, and vaccination. Three themes transverse the five dimensions: (a) needs, (b) positive changes, and (c) phases of the pandemic. In general, patients did not experience delays or disruptions in their cancer treatment nor felt additionally burdened by the pandemic. Lockdown and isolation were reported as mixed experiences (positive and negative), and access to vaccination reassured patients against the risk of infection and instilled hope to return to normalcy. Additionally, we found low distress levels (M=2.9; SD=2.5) and high resilience scores (M=7; SD=1.3) in these patients. CONCLUSION: Swiss patients with cancer did not express major needs or disruptions in their care during this period of the COVID-19 pandemic. Results identify the mixed experiences of patients and highlight the high resilience levels.

[Patient involvement in oncology research - Development of a reference framework in French-speaking Switzerland]. / Implication des patients dans la recherche en oncologie - Développement d'un cadre de référence en Suisse romande.

Patient and public involvement (PPI) in research is increasingly recognized and encouraged by public and funding bodies. Although gaining momentum, the implementation of PPI in Switzerland remains recent. Since 2021, the Laboratoire des Patients, affiliated to the Swiss Cancer Center Léman (SCCL), aims to establish a PPI model for oncology research adapted to the local context that will assist researchers to apply PPI approaches within their projects. Among its functions, the Laboratoire des Patients will offer a training program for patients and researchers targeting PPI in research, support throughout the projects, and consultation and mediation services for patients and researchers. This article discusses the utility of PPI in research and describes the SCCL-PPI model.

L'implication des patients et du public (IPP) en recherche est de plus en plus reconnue et encouragée par les organismes publics et de financement. Bien qu'en accélération, l'implantation de l'IPP en Suisse reste récente. Depuis 2021, le Laboratoire des patients, affilié au Swiss Cancer Center Léman (SCCL), a pour but d'établir un modèle IPP pour la recherche en oncologie adapté au contexte local qui facilitera pour les chercheurs la mise en place des approches IPP au sein de leurs projets. Parmi ses fonctions, le Laboratoire des patients offrira des programmes de formation pour patients et chercheurs ciblant l'IPP en recherche, un accompagnement tout au long des projets, ainsi que des services de consultation et médiation pour patients et chercheurs. Cet article discute l'utilité de l'IPP en recherche et décrit le modèle SCCL-IPP.