Introduction
The involvement of healthcare professionals and patients is increasingly recognised as essential to the design of health services and interventions.1–3 However, codesign is rare in respiratory medicine. Our recent search of five major respiratory journals only identified two research articles which discussed how codesign or patient and public involvement had been conducted in the development of respiratory medicine interventions or plans for their implementation (online supplemental material 1). This suggests that little attention is paid to the involvement of healthcare professionals and patients, or that reporting of involvement is insufficient.
In this Perspective, we describe and critically reflect on our experience of involving patients and healthcare professionals in the design of an intervention to improve asthma care. Our intention is to open a discussion about the value and feasibility of codesign approaches in respiratory medicine, so that the processes can be developed, refined and applied to maximise codesign’s role in improving the effectiveness and delivery of respiratory interventions. In this Perspective, we reflect on the strengths and weaknesses of our adaptation of the experience-based codesign (EBCD) process, outline how EBCD principles can be used in respiratory research and propose actions for patients, health professionals, researchers, and funders to develop the potential of EBCD in respiratory research.
Short-acting beta agonist (SABA) overuse (≥3 canisters per year) is associated with worse asthma outcomes and accounts for the majority of greenhouse gas emissions from asthma inhalers in the UK.4 5 Reducing SABA overuse aligns with the National Health Service (NHS) long-term plan to optimise asthma treatment while minimising environmental impact, but adoption of local asthma guidelines for an SABA-free strategy using maintenance and reliever therapy for appropriate asthma patients is limited (online supplemental material 2). SABA rEductioN Through ImplemeNting Hull asthma guidELines (SENTINEL) aims to improve asthma outcomes and reduce the environmental impact of asthma medications in Hull and East Yorkshire by promoting implementation of the local adult asthma guideline.
Initial consultation was undertaken with key stakeholders including primary and secondary care clinicians and commissioners of asthma services. This consultation comprised a series of virtual meetings during which a multifaceted intervention was drafted. The draft intervention was circulated to meeting participants and refined in response to comments. This proposed intervention was then adapted and optimised through a series of codesign workshops with staff and patients from participating primary care networks (PCNs) to ensure it would meet the needs of the local population and healthcare providers, as described in this Perspective. The finalised intervention will be implemented across Hull over a 12-month period with robust evaluation and comprehensive evidence generation, with intervention delivery phased across PCNs in a step-wedge approach.
How we adapted EBCD
Recognising the importance of Involve's principles for co-producing research,6 which encompass the inclusion of all perspectives and skills, valuing of the knowledge of all stakeholders, and a reciprocal (rather than contractual) approach, we used a codesign process based on EBCD principles to develop and refine the SENTINEL intervention with patients and healthcare staff.7 Rather than seeking to ‘perfect’ processes or pathways from a service perspective, EBCD focuses on the experiences of patients as a vital source of knowledge about service redesign.8 Pivotal in this process are the facilitation of codesign workshops that bring together patients and staff, so that boundaries are crossed, new working relationships are formed, and new insights are obtained.9 Mindful of the limited contextual tailoring of many interventions in health services,10 we sought to use a codesign process adapted from EBCD principles, so that patients and staff could ‘tell the untold stories’ that would enable a contextually informed refinement of the SENTINEL intervention focused on the needs of the patients who could benefit from the intervention and the healthcare professionals with a role in delivering it.
EBCD processes have been honed to address the frequently encountered challenges posed by limited timescales, for example, in Locock et al’s ‘accelerated’ process (seven stages with two pathways completed in 12 months), which was developed from the Point of Care Foundation’s process (eight stages in 12 months).7 11 12 We adapted Locock et al’s accelerated approach to build on the already-completed initial SENTINEL intervention development work and to enable the timely completion of codesign to inform implementation of the intervention in Hull and East Riding of Yorkshire PCNs (table 1).
Central to our adaptation of EBCD was close consideration of the views and experiences of healthcare staff as well as patients. There were both healthcare staff-facing (eg, the intervention pillars ‘healthcare professional education’ and ‘real-time data monitoring and reporting of asthma care metrics’) and patient-facing (eg, aspects of the ‘targeted asthma reviews’ and ‘patient support and education’) elements to the intervention. Healthcare staff were, therefore, ‘recipients’ or ‘end-users’ of the intervention as well as patients, and as such their insights were important for the development of the intervention and its implementation.
Although the reduced time frame of our codesign process necessitated a reduced number of stages and participants compared with previous studies, we preserved the focus on individuals’ experiences and unique perspectives as the core element of our adapted approach. The themes that emerged during individual exploratory meetings were used as catalysts for discussion in group meetings to ensure individuals’ insights remained central to the process of refining the intervention. By bringing healthcare professionals and patients together in joint discussion, we allowed debates to cross boundaries between different roles and for final decisions to draw from a wide base of experiences.