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Developing and testing the ExerciseGuide UK website for people with lung cancer: reflections on the added value of patient and public involvement within a doctoral degree

Curry, Jordan; Roberts, Helen; Smith, Alan; Riley, Diane; Pearson, Mark; Forbes, Cynthia C.

Authors

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Ms Helen Roberts Helen.Roberts@hull.ac.uk
Patient and Public Involvement Coordinator

Alan Smith

Diane Riley



Abstract

Background: Lung cancer has one of the highest incidence and mortality rates worldwide. Physical activity can provide those diagnosed with lung cancer with several physical and psychological benefits. However, the examination of digitally delivered physical activity to those with lung cancer is not as researched as other common cancers. Often, those diagnosed with lung cancer are older adults (65 years or older). Older adults are often wrongly assumed to lack digital skills, interest, and not engage with digital technology regularly. Although individuals are interested, would involving older people in designing of websites and apps result in better engagement?

Main body: In this article, the authors discuss the process of adapting a digital platform with a patient and public involvement group to provide those who have received a lung cancer diagnosis with a tailored physical activity program and health educational modules. We discuss the influence of recurrent patient and public involvement on the study, the patient and public involvement members, and the doctoral researcher.

Conclusion: Working with a patient and public involvement group over several months, especially potential users of a digital intervention, may enhance its relevance, accessibility, and usability. By engaging with patients, family, or caregivers for someone with lung cancer, the doctoral student gained insight into the needs of the study population and what to consider during development. All group members expressed their interest and enjoyment in their involvement, and several are now active members of a wider patient and public involvement network.

Citation

Curry, J., Roberts, H., Smith, A., Riley, D., Pearson, M., & Forbes, C. C. (2022). Developing and testing the ExerciseGuide UK website for people with lung cancer: reflections on the added value of patient and public involvement within a doctoral degree. Research Involvement and Engagement, 8(1), Article 66. https://doi.org/10.1186/s40900-022-00395-1

Journal Article Type Article
Acceptance Date Oct 26, 2022
Online Publication Date Nov 30, 2022
Publication Date Dec 1, 2022
Deposit Date Feb 15, 2023
Publicly Available Date Mar 29, 2024
Journal Research Involvement and Engagement
Print ISSN 2056-7529
Electronic ISSN 2056-7529
Publisher Springer Verlag
Peer Reviewed Peer Reviewed
Volume 8
Issue 1
Article Number 66
DOI https://doi.org/10.1186/s40900-022-00395-1
Keywords Patient and public involvement; Digital health; eHealth; Usability; Co-design; Lung cancer; Physical activity
Public URL https://hull-repository.worktribe.com/output/4135431

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Copyright Statement
© The Author(s) 2022.
Open Access. This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.




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