Participatory codesign of patient involvement in a Learning Health System: How can data‐driven care be patient‐driven care?

Abstract

Background: A Learning Health System (LHS) is a model of how routinely collected health data can be used to improve care, creating 'virtuous cycles' between data and improvement. This requires the active involvement of health service stakeholders, including patients themselves. However, to date, research has explored the acceptability of being 'data donors' rather than considering patients as active contributors. The study aimed to understand how patients should be actively involved in an LHS.Design: Ten participatory codesign workshops were conducted with eight experienced public contributors using visual, collective and iterative methods. This led contributors to challenge and revise not only the idea of an LHS but also revise the study aims and outputs.Results: The contributors proposed three exemplar roles for patients in patientdriven LHS, which aligned with the idea of three forms of transparency: informational, participatory and accountability. 'Epistemic injustice' was considered a useful concept to express the risks of an LHS that did not provide active roles to patients (testimonial injustice) and that neglected their experience through collecting data that did not reflect the complexity of their lives (hermeneutic injustice).Discussion: Patient involvement in an LHS should be 'with and by' patients, not 'about or for'. This requires systems to actively work with and respond to patient feedback, as demonstrated within the study itself by the adaptive approach to responding to contributor questions, to work in partnership with patients to create a 'virtuous alliance' to achieve change.

Epistemic justice in public involvement and engagement: Creating conditions for impact

“…If health research is to benefit from experiential knowledge, public collaborators need testimonial justice. What they say needs to be taken as worthy of influencing the research 12 . Sociologists have had a longstanding interest in people's everyday ideas about health and illness 13–15 .…”

“…What they say needs to be taken as worthy of influencing the research. 12 Sociologists have had a longstanding interest in people's everyday ideas about health and illness. 13 , 14 , 15 These ideas have been explored in the context of public health and healthcare.…”

‘We are data rich but information poor’: how do patient-reported measures stimulate patient involvement in quality improvement interventions in Swedish hospital departments?

“…These measures potentially influence QI interventions, but this study corroborates previous research3 30 and illustrates significant opportunity for improvement. Earlier research indicates that hospital professionals do not request large amounts of data as they need only the relevant data for guidance, recommendations and prioritisation of each case 40. Patient-reported measures must help professionals focus on what matters most in QI rather than overwhelm them with information or demanding administration.…”

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.…”