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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 patient-driven 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., Patient or Public Contribution: Public contributors were active partners throughout, and co-authored the paper., (© 2021 The Authors. Health Expectations published by John Wiley & Sons Ltd.)

Background: Patients and carers should be actively involved in patient safety and empowered to use person-centred approaches where they are asked to both identify safety concerns and partner in preventing them., Objectives: The aim of this study was to co-design a patient safety guide for primary care (PSG-PC) to support patients and carers to address key patient safety questions and identify key points where they can make their care safer. The objectives were to i) identify when and how patients and carers can be involved in primary care patient safety, and ii) identify the relevant information to include in the PSG-PC., Design: An experience-based co-design approach., Setting and Participants: We conducted three workshops with patients, carers, community pharmacists and general practitioners to develop and refine the PSG-PC., Results: Participants identified both explicit and implicit issues of primary care patient safety especially relating to technical and relational components of involving patients and carers. The importance of communication, understanding roles and responsibilities, and developing partnerships between patients and health-care providers were considered essential for actively involving patients in patient safety. Co-developing the PSG-PC provided insight to improve care to develop the PSG-PC., Discussion: The PSG-PC is the first guide to be developed for primary care, co-designed with patients, carers, general practitioners and pharmacists. The PSG-PC will support patients and carers to partner with health-care professionals to improve patient safety addressing international and national priorities to continuously improve patient safety., (© 2020 The Authors. Health Expectations published by John Wiley & Sons Ltd.)