'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 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.

Keywords: codesign; coproduction; patient decision aid; shared decision‐making.

Figure 1

Adapted from NHS England statutory guidance B1762 ‘Working in partnership with people and communities’. Rectangular boxes show how we followed this guidance when planning and executing the patient workshop and for the codesign and coproduction of the patient decision aid/website. PtDA, patient decision aids.

Figure 2

Draft logic model for patient decision aid website/booklet, displayed on the wall in poster size during the workshop. Notes were affixed to this throughout the day with ideas and suggestions from patients and facilitators (shown in circles, numbered). 1. ‘These are our “active ingredients” for decision‐making’. 2. ‘Why doesn't the UK have panel genetic testing?’ 3. ‘Improve equity of access/opportunity for information’. 4. ‘This purple box should move up closer to the beginning’. 5. ‘Clinicians need to remember that we are people too, not just part of the process’. 6. ‘Use of language: clinician + patient ‐ WE’. 7. ‘Is my clinician “on board” with the decision aid usage?’ 8. ‘Heavy decision/burden. What does it all mean? However, clinician often makes this for you’. 9. ‘Having time to consider. Ability to process’. 10. ‘Peer‐peer/patient support groups’. 11. ‘Professional education, especially for rarer disorders’. 12. ‘Cultural/professional stigmas, discrimination concerns’. 13. ‘Empowerment of patient, improved advocacy, specialists’ 14. ‘Urgency: where do we capture this? Treatment versus risk reduction versus age‐related risks’. 15. ‘Timing of decision might be affected by other responsibilities, for example, young children to care for’. 16. ‘Other people's stories: maybe use video testimonials. Less of a “scenario” if it's spoken’.

Figure 3

Theories considered and selected for short, lay‐friendly presentations at the workshop. Elwyn et al. identified eight theories (shown in boxes) published between 1940 and 2010 with the most relevance to design and evaluation of decision‐support interventions. Additional theories or constructs from theories were also considered, based on publications found through forward citation‐searching, a rapid overview of the decision‐making theory literature and discussion amongst workshop organisers with expertise in psychology, health behaviour decision making and clinical genetics. The final theories presented at the workshop are numbered 1–6 and shown in blue ovals.

Figure 4

Live visual summary created by a professional artist (Raquel Durán), summarising a lay interpretation of the presentations and the patient experiences and views shared in small group discussions.

Figure 5

What is important to people when they make decisions? Schematic map of subthemes (shown in boxes): autonomy, emotions, time of life, resilience, self‐efficacy, feeling alone/excluded, understanding risks, influence of others and uncertainty. In the centre (shown in an oval) is the overarching theme: It's personal.

Figure 6

Revised logic model based on output from the workshop, including thematic analysis of patient small group discussions and artwork summary drawing and notes placed on the logic model poster.