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. 2024 Jul 1;8(4):pkae048.
doi: 10.1093/jncics/pkae048.

Meaningful consumer involvement in cancer care: a systematic review on co-design methods and processes

Nicole Kiss  1   2 , Hannah Jongebloed  3 , Brenton Baguley  1 , Skye Marshall  3   4   5 , Victoria M White  6 , Patricia M Livingston  3   7 , Kathy Bell  8 , Leonie Young  8 , Sabe Sabesan  8   9 , Dayna Swiatek  7 , Anna Boltong  10   11 , Joanne M Britto  12 , Anna Ugalde  3
Affiliations

Meaningful consumer involvement in cancer care: a systematic review on co-design methods and processes

Nicole Kiss et al. JNCI Cancer Spectr. .

Abstract

Objective: Although the benefits of consumer involvement in research and health care initiatives are known, there is a need to optimize this for all people with cancer. This systematic review aimed to synthesize and evaluate the application of co-design in the oncology literature and develop recommendations to guide the application of optimal co-design processes and reporting in oncology research, practice, and policy.

Methods: A systematic review of co-design studies in adults with cancer was conducted, searching MEDLINE, CINAHL, Embase, and PsycINFO databases and included studies focused on 2 concepts, co-design and oncology.

Results: A total of 5652 titles and abstracts were screened, resulting in 66 eligible publications reporting on 51 unique studies. Four frameworks were applied to describe the co-design initiatives. Most co-design initiatives were designed for use in an outpatient setting (n = 38; 74%) and were predominantly digital resources (n = 14; 27%) or apps (n = 12; 23%). Most studies (n = 25; 49%) used a co-production approach to consumer engagement. Although some studies presented strong co-design methodology, most (n = 36; 70%) did not report the co-design approach, and 14% used no framework. Reporting was poor for the participant level of involvement, the frequency, and time commitment of co-design sessions. Consumer participation level was predominantly collaborate (n = 25; 49%).

Conclusions: There are opportunities to improve the application of co-design in oncology research. This review has generated recommendations to guide 1) methodology and frameworks, 2) recruitment and engagement of co-design participants, and 3) evaluation of the co-design process. These recommendations can help drive appropriate, meaningful, and equitable co-design, leading to better cancer research and care.

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Conflict of interest statement

NK reports funding from the Victorian Cancer Agency, Medical Research Future Fund, World Cancer Research Fund, and Medical Nutrition Industry. AU reports funding from the Victorian Cancer Agency, Medical Research Future Fund, and Cancer Australia. SM reports funding from Deakin University. KB and LY report consulting fees from Deakin University. HJ, BB, VW, TL, JB, AB, DS, and SS have no conflicts of interest to report.

Figures

Figure 1.
Figure 1.
PRISMA flow diagram.
Figure 2.
Figure 2.
Description of the frameworks applied to analyze the co-design initiatives. aVargas et al. (1); bco-design used as the overarching term; cadapted from a systematic review by Eyles et al. (16); dBoyd et al. (9); eAgency for Clinical Innovation, page 6 (17). Consumer refers to people with cancer. Stakeholder refers to all codesign participants including people with cancer, carers, health professionals, or other stakeholders.
Figure 3.
Figure 3.
Recommendations for researchers, clinicians and consumer advocacy organizations for the application of co-design in oncology. Co-design used as an overarching term to describe the broad initiative, whereas co-design approach is as defined by Vargas et al. (1).
See this image and copyright information in PMC

References

    1. Vargas C, Whelan J, Brimblecombe J, Allender S.. Co-creation, co-design, co-production for public health—a perspective on definition and distinctions. Public Health Res Pract. 2022;32(2):e3222211. - PubMed
    1. NHS National Institute for Health Research. Public Involvement in Research: Values and Principles Framework: INVOLVE. Eastleigh: INVOLVE. 2016. https://www.invo.org.uk/posttypepublication/public-involvement-in-resear.... Accessed May 1, 2023.
    1. Patient Centred Outcomes Research Institute. Engagement in Research: PCORI’s Foundational Expectations for Partnerships. Washington, DC: PICORI; https://www.pcori.org/. Accessed November 11, 2023.
    1. National Health and Medical Research Council. Statement on Consumer and Community Involvement in Health and Medical Research. Canberra, ACT: National Health and Medical Research Council; 2016.
    1. American Society of Clinical Oncology. How Advocates Help Create Guidelines. Atlanta, GA, USA: American Society of Clinical Oncology. https://www.cancer.net/blog/2017-03/how-advocates-help-create-guidelines. Accessed May 1, 2023.

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