Actively engaging multi-level stakeholders in cancer screening and cancer-related studies: a scoping review
There are many stakeholders involved in cancer screening and cancer-related research, including those from the micro, meso, and macro levels. The ways in which stakeholders are engaged are numerous, with some methods being more active than others. There has been limited investigation into which stakeholders are being engaged, how they’re being engaged, and if these stakeholders are being engaged together. The aim of this scoping review was to explore methods of active stakeholder engagement with multiple levels of stakeholders in cancer-related studies. This study followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews guidelines. Articles were included for analysis if they included, at least, two levels of stakeholders who were involved in active stakeholder engagement and originated from the Western countries. There were no restrictions on the date of publication, language, or study design. One hundred and seventy-eight studies met the inclusion criteria. Most articles originated from the United States, were published between 2020 and 17 June 2026, and the topic was not related to any specific cancer type. The micro- and meso-level stakeholder combination was most frequently reported, and 58.4% of studies described stakeholders being engaged together. Interviews, focus groups, and committees were the most commonly reported engagement activities. Macro-level stakeholders may not be engaged due to the possibility of power imbalances with micro- and meso-level stakeholders. There was great variation in the way stakeholder engagement activities were described, highlighting a need to negotiate terminology. Cancer-related research impacts and includes many different stakeholders, including patients, doctors, and those who work in health policy. Researchers include stakeholders to improve their projects by considering and including different perspectives. However, there is no standard way stakeholders are included in research, and some activities are more active than others. Active engagement means that the perspectives being elicited are to be used, and stakeholders are not included just to fulfil a requirement. The aim of this study was to explore how multiple types of stakeholders in cancer-related research have been engaged in published articles. Articles were included for analysis if they had, at least, two different types of stakeholders actively engaged, and they originated from Western countries. There were no restrictions on publication date, the language they were published in, or their study design. One hundred and seventy-eight articles were included in this study. Most of them originated from the United States, were published between 2020 and 17 June 2026, and the topic of the articles were not related to any specific type of cancer. Most frequently, stakeholders including, or similar to, patients and doctors participated in the projects, and they were engaged together in 58.4% of the articles. Interviews, focus groups, and committees were the most common activities for stakeholders. Stakeholders with more influence may not have participated due to the possibility of power imbalances. The way stakeholder activities were described varied considerably, highlighting a need to standardize these descriptions.
Authors
- Mette Bach Larsen (ORCID: https://orcid.org/0000-0002-0727-5571)
- Rikke Buus Bøje (ORCID: https://orcid.org/0000-0003-0924-1057)
- Pia Kirkegaard (ORCID: https://orcid.org/0000-0003-2099-253X)
- Louise Stenholt (ORCID: https://orcid.org/0000-0001-5995-9564)
- Grace McKinney (ORCID: https://orcid.org/0009-0000-8994-4953)
- Pernille Aakjaer Mikkelsen
- Camilla Rahr Tatari
Institutions
- University of Southern Denmark (DK)
- Aarhus University (DK)
- Lillebaelt Hospital (DK)
- Regional Hospital Randers (DK)
- Regional Hospital Central Jutland (DK)
- VIA University College (DK)
Publication Details
- Journal
- Research Involvement and Engagement
- Published
- 2026-08-17
- DOI
- https://doi.org/10.1186/s40900-026-00954-w
- Primary Topic
- Mental Health and Patient Involvement
- Type
- article
- Field-Weighted Citation Impact
- 0.00