‘A good decision is the one that feels right for me’: Codesign with patients to inform theoretical underpinning of a decision aid website

Kelly Kohut*, Kate Morton, Karen Hurley, Lesley Turner, Caroline Dale, Susan Eastbrook, Rochelle Gold, Kate Henwood, Sonia Patton, Reshma Punjabi, Helen White, Charlene Young, Julie Young, Elizabeth Bancroft, Lily Barnett, Sarah Cable, Gaya Connolly, Beth Coad, Andrea Forman, Helen HansonGrace Kavanaugh, Katherine Sahan, Katie Snape, Bethany Torr, Rosalind Way, Elizabeth Winchester, Alice Youngs, Diana Eccles, Claire Foster

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

Abstract

Introduction: Patient decision aids (PtDA) complement shared decision-making with healthcare professionals and improve decision quality. However, PtDA often lack theoretical underpinning. We are codesigning a PtDA to help people with increased genetic cancer risks manage choices. The aim of an innovative workshop described here was to engage with the people who will use the PtDA regarding the theoretical underpinning and logic model outlining our hypothesis of how the PtDA would lead to more informed decision-making. Methods: Short presentations about psychological and behavioural theories by an expert were interspersed with facilitated, small-group discussions led by patients. Patients were asked what is important to them when they make health decisions, what theoretical constructs are most meaningful and how this should be applied to codesign of a PtDA. An artist created a visual summary. Notes from patient discussions and the artwork were analysed using reflexive thematic analysis. Results: The overarching theme was: It's personal. Contextual factors important for decision-making were varied and changed over time. There was no one ‘best fit’ theory to target support needs in a PtDA, suggesting an inductive, flexible framework approach to programme theory would be most effective. The PtDA logic model was revised based on patient feedback. Conclusion: Meaningful codesign of PtDA including discussions about the theoretical mechanisms through which they support decision-making has the potential to lead to improved patient care through understanding the intricately personal nature of health decisions, and tailoring content and format for holistic care. Patient Contribution: Patients with lived experience were involved in codesign and coproduction of this workshop and analysis as partners and coauthors. Patient discussions were the primary data source. Facilitators provided a semi-structured guide, but they did not influence the patient discussions or provide clinical advice. The premise of this workshop was to prioritise the importance of patient lived experience: to listen, learn, then reflect together to understand and propose ideas to improve patient care through codesign of a PtDA.

Original languageEnglish
Article numbere13844
Number of pages19
JournalHealth Expectations
Volume27
Issue number1
Early online date13 Sept 2023
DOIs
Publication statusPublished - 1 Feb 2024

Bibliographical note

Funding Information:
Raquel Durán, artist, for her live visual summary of the patient discussions, bringing together the art and science of medical decision-making. This work was supported by funding from Cancer Research UK (CG1296/A27223).

Funding Information:
Raquel Durán, artist, for her live visual summary of the patient discussions, bringing together the art and science of medical decision‐making. This work was supported by funding from Cancer Research UK (CG1296/A27223).

Publisher Copyright:
© 2023 The Authors. Health Expectations published by John Wiley & Sons Ltd.

Keywords

  • codesign
  • coproduction
  • patient decision aid
  • shared decision-making

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