Participatory co-design and normalisation process theory with staff and patients to implement digital ways of working into routine care: the example of electronic patient-reported outcomes in UK renal services

Abstract

Background Successful implementation of digital health systems requires contextually sensitive solutions. Working directly with system users and drawing on implementation science frameworks are both recommended. We sought to combine Normalisation Process Theory (NPT) with participatory co-design methods, to work with healthcare stakeholders to generate implementation support recommendations for a new electronic patient reported outcome measure (ePRO) in renal services. ePROs collect data on patient-reported symptom burden and illness experience overtime, requiring sustained engagement and integration into existing systems. Methods We identified co-design methods that could be mapped to NPT constructs to generate relevant qualitative data. Patients and staff from three renal units in England participated in empathy and process mapping activities to understand ‘coherence’ (why the ePRO should be completed) and ‘cognitive participation’ (who would be involved in collecting the ePRO). Observation of routine unit activity was completed to understand ‘collective action’ (how the collection of ePRO could integrate with service routines). Results The mapping activities and observation enabled the research team to become more aware of the key needs of both staff and patients. Working within sites enabled us to consider local resources and barriers. This produced ‘core and custom’ recommendations specifying core needs that could be met with customised local solutions. We identified two over-arching themes which need to be considered when introducing new digital systems (1) That data collection is physical (electronic systems need to fit into physical spaces and routines), and (2) That data collection is intentional (system users must be convinced of the value of collecting the data). Conclusions We demonstrate that NPT constructs can be operationalised through participatory co-design to work with stakeholders and within settings to collaboratively produce implementation support recommendations. This enables production of contextually sensitive implementation recommendations, informed by qualitative evidence, theory, and stakeholder input. Further longitudinal evaluation is necessary to determine how successful the recommendations are in practice.

Co-designing new tools for collecting, analysing and presenting patient experience data in NHS services: working in partnership with patients and carers

“…The findings were crucial to capturing what tools might work in practice as they were on site. Published studies have similarly reported on the richness that emerges in the research and partnership from adopting PPIE in co-design [ 32 , 33 ]. Our work resonates with the reciprocal learning reported emphasising the importance of building the foundations for relationships, fostering trust, respect, creating a safe space, to talk about the research and the effects on the partnership [ 74 ].…”

“…When designing digital health interventions, these should equally be based on patient and carer experiences [ 29 – 31 ]. Finally, PPIE in co-design is context dependent [ 32 , 33 ] and thus it is important to outline the approach taken in the co-design of an intervention.…”

Time to re‐envisage culturally responsive care: Intersection of participatory health research and implementation science

“…This synergistic participatory implementation methodology, informed by NPT, is being explored and applied to meaningfully involve relevant parties in developing and evaluating a range of complex interventions. Some examples include; support for relatives of patients entering end‐of‐life care (Duke et al, 2020), and participatory co‐design of electronic patient reported outcome systems (Knowles et al, 2021). In the latter study by Knowles et al (2021), the authors concluded that participatory approaches supported the establishment of meaningful partnerships and collaboration; and led to an enhanced, context‐relevant articulation and specification of NPT constructs.…”

Innovations in implementing a health systems response to violence against women in 3 tertiary hospitals of Maharashtra India: Improving provider capacity and facility readiness

“…A recent evaluation of a health system intervention for addressing VAW in Palestine utilized Extended Normalization Process Theory [NPT] to identify intervention-context interactions that impacted fidelity and workability of the specific intervention ( Bacchus et al, 2021 ). NPT and Extended Normalization Theory are theories of “mechanisms that can support or impede the implementation of new ways of working” ( Knowles et al, 2021 ). These theories include concepts relevant to our planning and understanding of ways to design and implement health system response to VAW in resource-constrained environments, including users’ capability, capacity of the context to implement the intervention, including the range of resources available to individuals within the system to support implementation, and potential, which is “individual readiness to translate beliefs and attitudes into behaviours that are congruent (or not) with system norms and roles” ( Bacchus et al, 2021 ).…”

“…), and collective action (what are the existing routines and practices that the intervention must work alongside?) ( Knowles et al, 2021 ). The present paper describes the process of generating in-depth understanding of multiple components of the context in tertiary facilities in Maharashtra, India, in order to inform intervention components and implementation plans.…”