‘A good decision is the one that feels right for me’: Codesign with patients to inform theoretical underpinning of a decision aid website
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...
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Wiley
2024-02-01
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| Series: | Health Expectations |
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| Online Access: | https://doi.org/10.1111/hex.13844 |
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| author | Kelly Kohut Kate Morton Karen Hurley Lesley Turner The CanGene‐CanVar Patient Reference Panel 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 Hanson Grace Kavanaugh Katherine Sahan Katie Snape Bethany Torr Rosalind Way Elizabeth Winchester Alice Youngs The International Lynch Decision Aid Stakeholder Panel Diana Eccles Claire Foster |
| author_facet | Kelly Kohut Kate Morton Karen Hurley Lesley Turner The CanGene‐CanVar Patient Reference Panel 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 Hanson Grace Kavanaugh Katherine Sahan Katie Snape Bethany Torr Rosalind Way Elizabeth Winchester Alice Youngs The International Lynch Decision Aid Stakeholder Panel Diana Eccles Claire Foster |
| author_sort | Kelly Kohut |
| collection | DOAJ |
| description | 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. |
| format | Article |
| id | doaj-art-5d85ab691f14464786d07d0d55ab91d4 |
| institution | Kabale University |
| issn | 1369-6513 1369-7625 |
| language | English |
| publishDate | 2024-02-01 |
| publisher | Wiley |
| record_format | Article |
| series | Health Expectations |
| spelling | doaj-art-5d85ab691f14464786d07d0d55ab91d42025-08-23T11:53:04ZengWileyHealth Expectations1369-65131369-76252024-02-01271n/an/a10.1111/hex.13844‘A good decision is the one that feels right for me’: Codesign with patients to inform theoretical underpinning of a decision aid websiteKelly Kohut0Kate Morton1Karen Hurley2Lesley Turner3The CanGene‐CanVar Patient Reference PanelCaroline Dale4Susan Eastbrook5Rochelle Gold6Kate Henwood7Sonia Patton8Reshma Punjabi9Helen White10Charlene Young11Julie Young12Elizabeth Bancroft13Lily Barnett14Sarah Cable15Gaya Connolly16Beth Coad17Andrea Forman18Helen Hanson19Grace Kavanaugh20Katherine Sahan21Katie Snape22Bethany Torr23Rosalind Way24Elizabeth Winchester25Alice Youngs26The International Lynch Decision Aid Stakeholder PanelDiana Eccles27Claire Foster28School of Health Sciences, Centre for Psychosocial Research in Cancer (CentRIC) University of Southampton Southampton UKSchool of Health Sciences, Centre for Psychosocial Research in Cancer (CentRIC) University of Southampton Southampton UKStanford R. Weiss, MD Center for Hereditary Colorectal Neoplasia Cleveland Clinic Cleveland Ohio USAPatient and Public CollaboratorsPatient and Public CollaboratorsPatient and Public CollaboratorsPatient and Public CollaboratorsPatient and Public CollaboratorsPatient and Public CollaboratorsPatient and Public CollaboratorsPatient and Public CollaboratorsPatient and Public CollaboratorsPatient and Public CollaboratorsCancer Genetics Unit and Academic Urology Unit The Royal Marsden NHS Foundation Trust London UKSt George's University Hospitals NHS Foundation Trust London UKSt George's University Hospitals NHS Foundation Trust London UKSt George's University Hospitals NHS Foundation Trust London UKSt George's University Hospitals NHS Foundation Trust London UKSt George's University Hospitals NHS Foundation Trust London UKSt George's University Hospitals NHS Foundation Trust London UKDivision of Genetics and Epidemiology The Institute of Cancer Research London UKNuffield Department of Population Health, The Ethox Centre University of Oxford Oxford UKSt George's University Hospitals NHS Foundation Trust London UKDivision of Genetics and Epidemiology The Institute of Cancer Research London UKDivision of Genetics and Epidemiology The Institute of Cancer Research London UKSt George's University Hospitals NHS Foundation Trust London UKSt George's University Hospitals NHS Foundation Trust London UKFaculty of Medicine University of Southampton Southampton UKSchool of Health Sciences, Centre for Psychosocial Research in Cancer (CentRIC) University of Southampton Southampton UKAbstract 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.https://doi.org/10.1111/hex.13844codesigncoproductionpatient decision aidshared decision‐making |
| spellingShingle | Kelly Kohut Kate Morton Karen Hurley Lesley Turner The CanGene‐CanVar Patient Reference Panel 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 Hanson Grace Kavanaugh Katherine Sahan Katie Snape Bethany Torr Rosalind Way Elizabeth Winchester Alice Youngs The International Lynch Decision Aid Stakeholder Panel Diana Eccles Claire Foster ‘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 codesign coproduction patient decision aid shared decision‐making |
| title | ‘A good decision is the one that feels right for me’: Codesign with patients to inform theoretical underpinning of a decision aid website |
| title_full | ‘A good decision is the one that feels right for me’: Codesign with patients to inform theoretical underpinning of a decision aid website |
| title_fullStr | ‘A good decision is the one that feels right for me’: Codesign with patients to inform theoretical underpinning of a decision aid website |
| title_full_unstemmed | ‘A good decision is the one that feels right for me’: Codesign with patients to inform theoretical underpinning of a decision aid website |
| title_short | ‘A good decision is the one that feels right for me’: Codesign with patients to inform theoretical underpinning of a decision aid website |
| title_sort | a good decision is the one that feels right for me codesign with patients to inform theoretical underpinning of a decision aid website |
| topic | codesign coproduction patient decision aid shared decision‐making |
| url | https://doi.org/10.1111/hex.13844 |
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