Developing a patient safety guide for primary care: A co-design approach involving patients, carers and clinicians.

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.

Patient and public involvement in doctoral research: reflections and experiences of the PPI contributors and researcher.

PLAIN ENGLISH SUMMARY: There is evidence in the literature showing that involving patients and the public in health research can have a positive influence on quality, relevance and impact of research. However, patients and the public are not always involved in all stages of the research. There is often no explanation as to why they were only involved in some stages of the research and not others. Additionally, there is often no description of researchers' or PPI contributor's experiences of involvement. This also raises another issue which is a lack of recording of impact such involvement can have on the research process and the people involved in the research. In this paper, we present what PPI in a doctoral research should look like by providing a detailed description of how involvement occurred from pre-funding to dissemination stages of the research process. We provide some practical examples of how this was done and how involving patients made a difference to the research project. Finally, we present reflections from the patient and public contributors and the researcher on involvement in this project along with some recommendations for future doctoral and postdoctoral researchers considering involving public/patient contributors in their research. ABSTRACT: Background Patient and Public Involvement (PPI) has received considerable attention in the last two decades and working in partnership and co-design have now become a prerequisite in health services research in the UK. However, there is a lack of evidence and consistency in recording PPI and related activities. Researchers and PPI contributors are encouraged to record and reflect on the impact of PPI on research. There is significant variation in the way PPI contributors are involved, and it is often limited to some stages of the research cycle than others, without any reflections on the decision-making process for such involvement or any transferable learning. This has resulted in failure to provide a narrative of the research journey including researchers' and PPI contributors' personal reflections of involvement. Therefore, this paper provides an exemplar of what PPI in a doctoral research context should look like by providing a detailed account of how PPI was embedded in a doctoral research project, the PPI contributors and researcher's reflections and key recommendations for involving people specifically in doctoral research.Methods A reflective approach was taken using data from PPI contributor and researcher notes, e-mail correspondence, meeting notes. Data is presented narratively to reflect on the experiences of involvement throughout the research cycle.Results Undertaking PPI enhanced the quality and relevance of the doctoral research, contributed to the recruitment of study participants, data analysis and dissemination. Building trust and relationships with PPI contributors was key to continued involvement throughout the life of the project and beyond. There is a need to adopt flexible approaches rather than a one-size-fits-all model when working with PPI contributors. Reflections by PPI contributors and the researcher emphasises that involvement was a rewarding experience.Conclusions This paper contributes to the wider literature by providing an exemplar of how PPI can be embedded in doctoral research and demonstrates the value of PPI to the research process and the individuals involved. We also present recommendations on how PPI can be incorporated by doctoral and postdoctoral researchers when planning PPI in their research project.

Using patient and public involvement to improve the research design and funding application for a project aimed at fostering a more collaborative approach to the NHS health check: the CaVIAR project (better Care Via Improved Access to Records).

BACKGROUND: Following an initial NHS Health Check appointment, the National Institute for Health and Care Excellence (NICE) suggest patients with QRISK2 scores of ≥10% should be offered advice on lifestyle and the risks and benefits of starting a statin. NICE recommend GPs should ascertain patients' pre-existing knowledge of cardiovascular disease risk, explore health beliefs, assess readiness to change, offer support, and engage family members. Condensing this complex discussion into a short consultation may result in inadequate patient understanding of the benefits of preventive measures. An alternative approach is needed. We propose a digital adjunct giving patients the opportunity to interact with their health check results from home before returning to see their GP. Before embarking on funding applications we sought the views of patients and members of the public. METHODS: We consulted the Primary Care Research in Manchester Engagement Resource (PRIMER), an established departmental Patient and Public Involvement (PPI) group (N = 9) and then ran a workshop with 19 members of the public, co-facilitated by 4 members of PRIMER. Following a brief presentation on the background to the project, attendees were split into four groups and introduced to Ketso, a toolkit for creative engagement. Ketso was used to encourage group discussions regarding the project idea. RESULTS: This PPI work improved the study design and proposed intervention. Discussions focussed on three themes: 1) positive feedback, 2) challenges and solutions, and 3) improvements/alternatives. Positive feedback included benefits to the NHS and patients. Challenges identified related to: 1) access, 2) data security, 3) engagement, and 4) negative consequences. Workshop members generated various solutions to these challenges and made additional suggestions for improvement relating to: 1) population (e.g. also including those with QRISK2 scores ≤10%), 2) duration (e.g. ongoing access to provide continued feedback), and 3) platform content (e.g. signposting to relevant services). CONCLUSIONS: This PPI work helped identify potential challenges and solutions not previously considered by the research team. Findings have informed the subsequent intervention design and strengthened the bid for funding. We aim to ensure ongoing patient and public involvement in all future stages.

A qualitative interview study of people living with well-controlled Type 1 diabetes.

OBJECTIVE: While many people with Type 1 diabetes find it difficult to achieve recommended blood glucose levels, a minority do achieve good control. Our study was conceived by patient and public (PP) partners and sought to learn about experiences of people living with well-controlled diabetes. DESIGN: A collaboration between academic health psychologists and five PP partners with experience of diabetes, who were trained to conduct and analyse semi-structured interviews. Fifteen adults with well-controlled Type 1 diabetes were interviewed about the history of their diabetes and their current self-management practices. Interviews were subjected to inductive thematic analysis. RESULTS: Eight sub-themes were arranged into two overarching themes, 'facing up to diabetes' and 'balance leads to freedom'. Participants described a process of acceptance and mastery of diabetes, and talked about how they gained a deeper understanding of bodily processes through trial and error. CONCLUSION: Based on the experiences of people with well-controlled Type 1 diabetes, interventions for people with this condition should encourage acceptance of the diagnosis and increasing confidence to experiment with behaviours (trial and error) to encourage 'mastery' of self-management. The research collaboration described here is an example of best practice for future researchers wanting to actively engage PP partners.