Elements of successful patient involvement in clinical cancer trials: a review of the literature.

Abstract

Patient involvement in clinical cancer research has gained much ground in the past few years and studies demonstrated positive outcomes of such involvement. Yet, they also indicated a lack of evidence around best methods and practices to achieve successful patient involvement. The aim of this literature review was to provide a synthesis of elements contributing to successful and meaningful ways of involving patients in oncology trials across different stages of research. This synthesis can offer practical support to researchers in their patient involvement journey. A PubMed literature search for original articles published between 2012 and early 2023 was carried out. In total, 3132 articles were identified, among which 152 were fully assessed for eligibility. Thirty-three articles met the predefined inclusion criteria and were subjected to a quality checklist. Patient involvement occurred most often in the development stage of cancer trials (85%) and was continuous and integrated throughout the entire lifecycle of research (67%). In total, 58 elements of successful patient involvement were identified, such as clearly defined roles and responsibilities of patient partners, input of multiple patients to ensure diversity, and regular touchpoints in the project. All these elements can be applied in future studies from the planning stage to the dissemination of study results. This review provides a set of practical recommendations that can be used by the cancer research community when planning to involve or already involving patients in their clinical trial activities.