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

Abstract

IntroductionPatient 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.MethodsShort 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.ResultsThe 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.ConclusionMeaningful 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 ContributionPatients 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 of Lynch ChoicesTM: Using implementation science to create a clinically deliverable patient decision support website to transform cancer genetics care pathways

“…Working together, with the support of a suite of resources including PtDA, shared decision-making between healthcare professionals and patients can help to support a 'good decision', which is always individual and the one that a patient feels 'is right for me'. 10 More research is needed to discover whether people follow through on intended decisions and whether use of PtDA improves patient care and health outcomes. However, none of this will be possible unless high quality, effective PtDA are used in the real-world setting, in the context of the resource limitations and time pressure that make systematic uptake challenging even when recommended by healthcare systems and government guidance.…”

“…A 'good' decision is intricately personal and based on values, priorities, life situation, tolerance for uncertainty and the influence of others. 10 Patient-facing resources for genetic cancer susceptibility are needed to scale-up information provision, due to the ever-increasing amount of genetic testing initiated through universal tumour screening [11][12][13] 'mainstreaming' beyond the traditional clinical genetics setting to point of care testing in oncology clinics [14][15][16][17][18] and additional findings in cancer susceptibility genes from genetic or genomic (whole genome sequencing) testing initiated for non-cancer related indications.…”