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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 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.

Plain English summary We conducted a study exploring how patients could be involved in improving services using health data. This paper reports on the evaluation of that study. We collected different kinds of feedback throughout, including a survey of impacts on contributors, a focus group to reflect on what worked well and what could be done better, and also sharing thoughts throughout the study itself. We analysed this feedback together, to make sure that both contributor and researcher perspectives were considered equally. We found that the successful co-production that happened during the study was the result of having ‘space to talk’ and ‘space to change’. Space to talk that meant we all shared our views and recognised each other as experts bringing equally important knowledge. Space to change meant that we acted on the knowledge shared, to change both the study and to change how we worked together. We found that these themes occurred at multiple levels. They were partly achieved by the specific participatory codesign methods that were used, but equally or perhaps more important was the trusting relationship between the researcher and contributors, including openness to explore tensions. The wider systems that supported involvement, in this case the financial reimbursement for contributor time, were also as important to this as the things that happened within the study itself. We recommend that future work creates ‘space to talk’ and ‘space to change’, and reports openly on how both contributors and researchers are affected by this.

Abstract 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.

Abstract Background The NHS Health Check Programme is a risk-reduction programme offered to all adults in England aged 40–74 years. Previous studies mainly focused on patient perspectives and programme delivery; however, delivery varies, and costs are substantial. We were therefore working with key stakeholders to develop and co-produce an NHS Health Check Programme modelling tool (workHORSE) for commissioners to quantify local effectiveness, cost-effectiveness, and equity. Here we report on Workshop 1, which specifically aimed to facilitate engagement with stakeholders; develop a shared understanding of current Health Check implementation; identify what is working well, less well, and future hopes; and explore features to include in the tool. Methods This qualitative study identified key stakeholders across the UK via networking and snowball techniques. The stakeholders spanned local organisations (NHS commissioners, GPs, and academics), third sector and national organisations (Public Health England and The National Institute for Health and Care Excellence). We used the validated Hovmand “group model building” approach to engage stakeholders in a series of pre-piloted, structured, small group exercises. We then used Framework Analysis to analyse responses. Results Fifteen stakeholders participated in workshop 1. Stakeholders identified continued financial and political support for the NHS Health Check Programme. However, many stakeholders highlighted issues concerning lack of data on processes and outcomes, variability in quality of delivery, and suboptimal public engagement. Stakeholders’ hopes included maximising coverage, uptake, and referrals, and producing additional evidence on population health, equity, and economic impacts. Key model suggestions focused on developing good-practice template scenarios, analysis of broader prevention activities at local level, accessible local data, broader economic perspectives, and fit-for-purpose outputs. Conclusions A shared understanding of current implementations of the NHS Health Check Programme was developed. Stakeholders demonstrated their commitment to the NHS Health Check Programme whilst highlighting the perceived requirements for enhancing the service and discussed how the modelling tool could be instrumental in this process. These suggestions for improvement informed subsequent workshops and model development.

IntroductionThe transition of patients across care settings is associated with a high risk of errors and preventable medication-related harm. Ensuring effective communication of information between health professionals is considered important for improving patient safety. A National Health Service(NHS) organisation in the North West of England introduced an electronic transfer of care around medicines (TCAM) system which enabled hospital pharmacists to send information about patient's medications to their nominated community pharmacy. We aimed to understand the adoption, and the implications for sustainable use in practice of the TCAM service.MethodsWe evaluated the TCAM service in a Clinical Commissioning Group (CCG) and NHS Foundation Trust in Salford, United Kingdom (UK). Participants were opportunistically recruited to take part in qualitative interviews through stakeholder networks and during hospital admission, and included hospital pharmacists, hospital pharmacy technicians, community pharmacists, general practice-based pharmacists, patients and their carers. A thematic analysis, that was iterative and concurrent with data collection, was undertaken using a template approach. The interpretation of the data was informed by broad sociotechnical theory.ResultsTwenty-three interviews were conducted with health care professionals patients and carers. The ways in which the newly implemented TCAM intervention was adopted and used in practice and the perceptions of it from different stakeholders were conceptualised into four main thematic areas: The nature of the network and how it contributed to implementation, use and sustainability; The material properties of the system; How work practices for medicines safety were adapted and evolved; and The enhancement of medication safety activities. The TCAM intervention was perceived as effective in providing community pharmacists with timely, more accurate and enhanced information upon discharge. This allowed for pharmacists to enhance clinical services designed to ensure that accurate medication reconciliation was completed, and the correct medication was dispensed for the patient.ConclusionsBy providing pharmacy teams with accurate and enhanced information the TCAM intervention supported healthcare professionals to establish and/or strengthen interprofessional networks in order to provide clinical services designed to ensure that accurate medication reconciliation and dispensing activities were completed. However, the intervention was implemented into a complex and at times fragmented network, and we recommend opportunities be explored to fully integrate this network to involve patients/carers, general practice pharmacists and two-way communication between primary and secondary care to further enhance the reach and impact of the TCAM service.

Introduction Patients and carers should be active partners in patient safety with healthcare professionals and be empowered to use personalised approaches to identify safety concerns and work together to prevent them. This protocol paper details a study to examine the feasibility of a multicomponent intervention to involve patients and/or carers in patient safety in primary care in the UK.Methods and analysis This is a two-phase, non-randomised feasibility mixed methods pragmatic study of a patient safety guide for primary care (PSG-PC). 8 general practices will recruit 120 patient and/or carer participants. All patient and/or carer participants will receive the PSG-PC. It will examine the feasibility and acceptability of the PSG-PC in primary care settings in patients aged 18 years or older who attend appointments at general practice with health professionals four or more times per year as either patients or carers. It will identify secondary outcomes for improving patient safety, health status and patient empowerment, and reducing health service utilisation over 6 months between baseline and 6-month follow-ups. The findings will inform whether a main effectiveness trial is feasible and, if so, how it should be designed, and how many patients and practices will be needed. The study will be undertaken between January 2020 and September 2021.Ethics and dissemination Ethical approval was obtained from the National Health Service London-West London and Gene Therapy Advisory Committee Research Ethics Committee (reference: 19/LO/1289). Research findings will be disseminated with participating general practices and shared in a range of different ways to engage different audiences, including presenting at international and national conferences, publishing in open-access, peer-reviewed journals and facilitating dissemination workshops within local communities with patients, carers and healthcare professionals.Trial registration number ISRCTN90222092.

This consensus statement reflects the deliberations of an international group of stakeholders with a range of expertise in public involvement and engagement (PI&E) relating to data-intensive health research. It sets out eight key principles to establish a secure role for PI&E in and with the research community internationally and ensure best practice in its execution. Our aim is to promote culture change and societal benefits through ensuring a socially responsible trajectory for innovations in this field. Our key premise is that the public should not be characterised as a problem to be overcome but a key part of the solution to establish socially beneficial data-intensive health research for all.