Codesign of Lynch Choices: using implementation science to create a clinically deliverable patient decision support website to transform cancer genetics care pathways

Background: genetic testing has increased without corresponding growth in genetics/oncology workforces. Resources including Patient Decision Aids (PtDA) are useful and valued by patients and clinicians to provide information and complement shared decision-making. Despite their promise, few PtDA have been developed for patients with genetic cancer susceptibility facing difficult decisions about risk management. We aimed to fill this gap in care, partnering with patients from the earliest stages of project conception. Methods: we codesigned Lynch Choices, a PtDA (interactive, personalised website/booklet) for families with Lynch Syndrome. This will later be adapted for other conditions. In addition to a Patient Reference Panel, we purposively invited a large, international stakeholder panel including patient groups, charities, public bodies, clinical and academic experts. Implementation strategies and frameworks were employed to identify barriers and facilitators and maximise uptake potential. Patient/stakeholder feedback was incorporated in a transparent Table of Changes using the Person-Based Approach. Patient funding was provided, and a publication policy agreed with stakeholders. Additional grant funding facilitated partnerships with underserved communities. Conclusions: Creating an effective, engaging PtDA is not enough. Systematic uptake in real world clinical practice, with its challenges and resource limitations, is needed to optimise benefit to patients and clinicians. Implementation science methods should be applied from the earliest stages of codesign of a PtDA, involving patients who will use the resource and a wide range of stakeholders. Assessment of speed and breadth of dissemination and usage will be collected to further evidence the benefit of embedding implementation science methods from the outset.<br/

Person-based co-design of a decision aid template for people with a genetic predisposition to cancer

BackgroundPeople with genetic predispositions to cancer are faced with complex health decisions about managing their risk. Decision aids can support informed, values-based decisions, alongside shared decision-making with a clinician. Whilst diagnoses of genetic predispositions to cancer are increasing, there is no scalable decision aid to support these people. This paper presents an accessible, relevant decision aid template which can be adapted for different predispositions to cancer.MethodsThe decision aid template was co-developed with 12 patients affected by cancer and informed by empirical and theoretical literature. In addition, consultations were conducted with a further 19 people with Lynch syndrome; a specific genetic predisposition to cancer. Clinical stakeholders were consulted regularly. Coulter's framework for decision aid development guided the process, and these activities were complemented by the International Patient Decision Aid Standards, and the latest evidence on communicating risk in decision aids. Programme theory was developed to hypothesise how the decision aid would support decision-making and contextual factors which could influence the process. Guiding principles co-developed with the patient panel described how the decision aid could effectively engage people.ResultsThe in-depth co-design process led to the identification of five core components of an accessible decision aid template for people with a genetic predisposition to cancer: defining the decision; a table showing implications of each option; optional further details such as icon arrays to show tailored risk and personal narratives; values clarification activity; and a summary to facilitate discussion with a clinician. Specific guidance was produced describing how to develop each component. The guiding principles identified that the decision aid template needed to promote trust, reduce distress, and be comprehensive, personally relevant and accessible in order to engage people.ConclusionAdopting a co-design process helped ensure that the decision aid components were relevant and accessible to the target population. The template could have widespread application through being adapted for different genetic predispositions. The exact content should be co-designed with people from diverse backgrounds with lived experience of the specific predisposition to ensure it is as useful, engaging and relevant as possible

‘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.</p