Title: Participatory research to strengthen the role of patient and public involvement in general practice service improvement
Funder: Department of Health and Social Care

Abstract: Objectives Patient and public involvement (PPI) in health service design and delivery is using increasing resources and gaining policy prominence as a means of improving the quality and safety of health services. However, there is little evidence about impact, and the Francis inquiry into failures at Mid Staffordshire NHS Trust concluded that existing institutional mechanisms for involving patients failed.(1) This results from confusion about the role, lack of guidance, and difficulty in measuring the effect of PPI. This proposal aims to develop an intervention to strengthen the role of PPI in service improvement, using general practice as an exemplar. PPI in general practice takes the form of Patient Participation Groups (PPGs). The intervention will identify the necessary conditions for normalisation of PPG involvement in service improvement. The strengthened role of PPGs can then be formally evaluated to assess the impact on patient care and outcomes. Design Participatory research methods will be used throughout the research reflecting evidence that this can result in increased acceptability and sustainability of interventions.(2) Normalisation process theory (NPT) will be the theoretical framework underpinning intervention development and evaluation.(3) The proposal involves three work streams (WS): WS1. A systematic narrative review to identify theories and mechanisms of how PPI can improve services, using NPT as a conceptual framework. WS2. Intervention design using economic principles to develop a locally adaptable, patient centred prioritisation survey for general practice service improvement. Known attributes of general practice will be discussed in stakeholder focus groups and a list of attributes amenable to change will be developed by consensus. These will be adapted into a prioritisation survey and piloted on a convenience sample using quantitative and qualitative methods, including NPT analysis. A consensus meeting of the PPI and expert advisory teams will make recommendations for PPGs/practices regarding how to use the prioritisation survey locally, drawing on the findings of the systematic review and participants' experience of PPGs. WS3. The intervention (prioritisation survey and recommendations for use) will be field tested in 3-4 general practices. The prioritisation survey will be analysed quantitatively and each PPG/practice will co-produce an action plan to address identified priorities. The process of using the intervention will be evaluated qualitatively, with interviews, documentary analysis, and observation of meetings. Qualitative data will be analysed using NPT resulting in a theory-informed framework of the key conditions necessary for successful PPI in general practice service improvement. Expected outcomes There will be three immediate outcomes: A locally adaptable, patient centred, prioritisation survey to be used by PPGs in partnership with general practice staff to plan service improvement. Recommendations on how to use the survey, including training required for patients and staff, advice on sampling strategies that can be used when conducting the survey locally, and key conditions for successful partnership working. A theory-informed framework of the key conditions necessary for successful PPI in general practice service improvement. This framework will include elements which are generalisable and transferable to other settings. Post doctoral research will involve adapting the intervention to produce a user-friendly interface, independent of a research facilitator. The intervention will then be empirically tested to investigate the effect on quality of general practice services, including patient experience. Intended benefits The intervention will provide practical help to PPGs and professionals regarding partnership working to improve local general practice services and improve quality of care. The theory-informed framework will add to the growing evidence base for PPI in service improvement and will be transferable to other settings. In the future, this will lead to authentic patient involvement ensuring services are responsive to patient need and deliver patient centred care, resulting in improved health outcomes.

Lay abstract: Aim Patient and public involvement (PPI) is seen as a way of improving health care services. But there is little guidance on how, when, and why to involve patients and the public. This makes it hard to measure the impact of PPI on health care services. More worryingly, the report into failings at Mid Staffordshire NHS Trust found that formal mechanisms of PPI failed.(1) Patients' concerns were not listened to or acted on, leading to harm. As a result, NHS England's Five Year Forward View calls for new and better ways of working with patients and the public to improve healthcare services.(5) I aim to design and test a clear role for PPI in planning and running of health care services. I will use general practice as an example. In the future, I aim to test if the strengthened' PPI role leads to improved services with better patient experience and patient safety. Background There are many terms to describe PPI. I use PPI' as it is used in national reports, and involvement suggests an active rather than consultative role. The NHS constitution gives patients and the public the right to be involved in all health services.(6) So far, the main focus has been on PPI in hospital services and commissioning groups. I have chosen to look at PPI in general practice for the following reasons: In the UK, it is the first place most people contact health care services. Patients and the public are involved by joining practice Patient Participation Groups (PPGs). From April 2015 it will be mandatory for general practices to have a PPG.(7) PPG activity is mainly related to feedback on one off projects. Patients are not always aware of all the aspects of general practice they could influence. General practices are small organisations. This can mean they have few skills and time for involving patients. It is the right time to strengthen PPGs' role in meaningful service improvement in general practice. Design and methods used Patients, the public, clinicians, managers, academics, and policy makers will be involved in all parts of the research. This proposal has three work streams (WS): WS1. We will systematically review the evidence, looking for examples of how PPI has improved health services. We will describe what has and has not worked, and use this in WS2. WS2. We will design an intervention that can be used in different general practices to strengthen PPGs' role. The intervention will include: A prioritisation survey. Unlike feedback, prioritisation shows which parts of a service people value most. Focus groups with patients, clinicians, managers, and policy makers will adapt an existing list of aspects of general practice that could improve services. The list will be turned into a survey and tested. PPGs will then use this survey in WS3. Advice, facilitation, and training for PPGs/staff on how to use the survey. We will use the findings of WS1 and our experience of PPGs, to develop recommendations. These could include advice on working together, getting credible results, and using these results for service improvement. WS3. We will test the developed intervention (WS2) in 3-4 general practices, in different areas. Each practice will choose versions of the survey to ask their patients. I will analyse the results using statistics. The PPG/staff will then agree and carry out an action plan based on the results. I will observe what happens, take notes, and interview patients and staff about their experiences. We will see how everyone understands the intervention, whether they are happy to take part, how easy it is to carry out, and what they think of the results. We will use this to make a framework to understand if it will work in other practices. Patient and public involvement This proposal is based on work I am already doing with patients, the public, and general practice staff in PPGs in Leeds and Manchester. Patients and the public will be involved in all parts of the project. They will join an advisory team to help run the research. Depending on their interest and experience there will be options to help do the research. Dissemination I will write a summary about what works and does not work. This will be published widely. I will present the results to patients, clinicians, managers, policy makers, and academics. In the future I will develop the intervention so that any PPG can use it. I will then measure whether the intervention leads to improved care and outcomes for patients.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: GENERIC HEALTH RELEVANCE