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

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

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.

codesign, coproduction, patient decision aid, shared decision-making
1369-6513
Kohut, Kelly
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Morton, Kate
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Hurley, Karen
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Turner, Lesley
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Dale, Caroline
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Eastbrook, Susan
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Gold, Rochelle
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Henwood, Kate
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Patton, Sonia
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Punjabi, Reshma
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White, Helen
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Young, Charlene
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Young, Julie
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Bancroft, Elizabeth
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Barnett, Lily
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Cable, Sarah
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Connolly, Gaya
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Coad, Beth
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Forman, Andrea
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Hanson, Helen
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Kavanaugh, Grace
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Sahan, Katherine
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Snape, Katie
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Torr, Bethany
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Way, Rosalind
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Winchester, Elizabeth
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Youngs, Alice
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Eccles, Diana
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Foster, Claire
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The CanGene‐CanVar Patient Reference Panel
The International Lynch Decision AidStakeholder Panel
Kohut, Kelly
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Morton, Kate
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Hurley, Karen
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Turner, Lesley
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Dale, Caroline
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Eastbrook, Susan
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Gold, Rochelle
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Henwood, Kate
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Patton, Sonia
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Punjabi, Reshma
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White, Helen
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Young, Charlene
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Young, Julie
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Bancroft, Elizabeth
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Barnett, Lily
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Cable, Sarah
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Connolly, Gaya
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Coad, Beth
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Forman, Andrea
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Hanson, Helen
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Kavanaugh, Grace
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Sahan, Katherine
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Snape, Katie
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Torr, Bethany
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Way, Rosalind
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Winchester, Elizabeth
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Youngs, Alice
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Eccles, Diana
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Foster, Claire
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Kohut, Kelly, Morton, Kate, Hurley, Karen, Turner, Lesley, Dale, Caroline, Eastbrook, Susan, Gold, Rochelle, Henwood, Kate, Patton, Sonia, Punjabi, Reshma, White, Helen, Young, Charlene, Young, Julie, Bancroft, Elizabeth, Barnett, Lily, Cable, Sarah, Connolly, Gaya, Coad, Beth, Forman, Andrea, Hanson, Helen, Kavanaugh, Grace, Sahan, Katherine, Snape, Katie, Torr, Bethany, Way, Rosalind, Winchester, Elizabeth, Youngs, Alice, Eccles, Diana and Foster, Claire , The CanGene‐CanVar Patient Reference Panel and The International Lynch Decision AidStakeholder Panel (2024) ‘A good decision is the one that feels right for me’: codesign with patients to inform theoretical underpinning of a decision aid website. Health Expectations, 27 (1), [e13844]. (doi:10.1111/hex.13844).

Record type: Article

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.

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Health Expectations - 2023 - Kohut - Version of Record
Available under License Creative Commons Attribution.
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Accepted/In Press date: 1 August 2023
e-pub ahead of print date: 13 September 2023
Published date: February 2024
Additional Information: 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

Identifiers

Local EPrints ID: 483369
URI: http://eprints.soton.ac.uk/id/eprint/483369
ISSN: 1369-6513
PURE UUID: a519c5c2-0a72-4099-b813-b0d5467d8e25
ORCID for Kate Morton: ORCID iD orcid.org/0000-0002-6674-0314
ORCID for Diana Eccles: ORCID iD orcid.org/0000-0002-9935-3169
ORCID for Claire Foster: ORCID iD orcid.org/0000-0002-4703-8378

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Date deposited: 30 Oct 2023 11:59
Last modified: 21 Sep 2024 01:49

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Contributors

Author: Kelly Kohut
Author: Kate Morton ORCID iD
Author: Karen Hurley
Author: Lesley Turner
Author: Caroline Dale
Author: Susan Eastbrook
Author: Rochelle Gold
Author: Kate Henwood
Author: Sonia Patton
Author: Reshma Punjabi
Author: Helen White
Author: Charlene Young
Author: Julie Young
Author: Elizabeth Bancroft
Author: Lily Barnett
Author: Sarah Cable
Author: Gaya Connolly
Author: Beth Coad
Author: Andrea Forman
Author: Helen Hanson
Author: Grace Kavanaugh
Author: Katherine Sahan
Author: Katie Snape
Author: Bethany Torr
Author: Rosalind Way
Author: Elizabeth Winchester
Author: Alice Youngs
Author: Diana Eccles ORCID iD
Author: Claire Foster ORCID iD
Corporate Author: The CanGene‐CanVar Patient Reference Panel
Corporate Author: The International Lynch Decision AidStakeholder Panel

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