Patient and public involvement in cancer research: A scoping review

Abstract

IntroductionPatient 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.MethodsWe 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.ResultsWe 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.ConclusionsResults 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 ContributionTwo 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.

Florida-California Cancer Health Equity Center (CaRE2) Community Scientist Research Advocacy Program

“…To strengthen our program, we look to add the involvement of program alumni to help with feedback and evaluation for our program. These planned changes are consistent with the increased attention to patient public involvement (PPI) in research design and recruitment (i.e., gatekeepers) in cancer programs, which we may find useful as our program continues to develop and is evaluated each year [ 25 , 26 ].…”

Involving parents of children treated for cancer in Sweden as public contributors to inform the design and conduct of an evaluation of internet-administered self-help for parents of children treated for cancer: a protocol

“…Currently, there is no published Swedish study evaluating the impact of public contribution in research, however some Swedish studies have explored experiences of public contribution in research [ 58 – 61 ]. Further, there is currently a lack of public contribution in research in the oncology field especially outside of Canada, the UK, and the USA [ 62 ].…”

“…We hope our planned public contribution activities and the examination of the acceptability, feasibility, and perceived impact of these activities will contribute to the growing evidence of how to embed and evaluate public contribution in healthcare research. This is of particular importance given: (1) the current lack of public contribution in Swedish healthcare research and in the oncology field [ 62 ]; (2) the need to strengthen the evidence base concerning the impact of public contribution in research [ 19 , 62 , 66 ]; and (3) the need to enhance researcher understanding concerning how to best implement public contribution in research. We hope that adding public contribution to the CHANGE trial will provide other researchers with guidance on how to embed public contribution in clinical research and add to the growing evidence base concerning the impact of public contribution in research.…”

Collaborating with cancer patients and informal caregivers in a European study on quality of life: protocol to embed patient and public involvement within the EUonQoL project

“…Although unintended, these requirements contribute to an already existing underrepresentation in research of patients and the public who are in a more vulnerable position. This may include people with learning difficulties, the elderly, or people from minority ethnic groups [ 26 ]. Additionally, online meetings tend to have a more formal nature, making it harder to feel connected to each other and to the project [ 32 ].…”

“…Furthermore, systematic and standardised reporting of PPI approaches remains limited. To enhance future research using a PPI approach, it should be reported, precisely and self-consciously, how and at which level PPI was employed [ 26 ]. This will be guided in the EUonQoL project by using a tool called the Guidance for Reporting Involvement of Patients and the Public (GRIPP2) reporting checklist.…”