Title: Developing a role for patients and the public in the implementation of health and social care research evidence into practice.
Funder: Department of Health and Social Care

Abstract: Background: NIHR spends a billion pounds a year on researching what works and what doesn’t work in health and social care. To ensure that this research is not wasted, we need to implement research evidence: to move from ‘what we know’ about a particular condition or health and social care service to ‘what we do’ to provide the best quality care. Most often, clinicians are the main implementers of research evidence. In this project, we want to explore the potential roles of patients, their families, and members of the public in using research evidence to improve the quality of care, as supporters, co-producers or leaders. We feel that it is important for patients and their families are involved in all decisions about their care, including how research evidence is implemented. Research aims: Our first aim is to learn more about how patients and wider communities can be involved in implementing research evidence. Second, we want to partner with patients and the public to develop a toolkit to support patient and public involvement in implementing research evidence. The 'Pathways to Implementation for Public Engagement in Research’ (PIPER) toolkit will provide a Guidance Manual and resources, developed with members of the public, to support research teams to work in partnership with patients and the public in implementation activities. Research Objectives: We have brought together a team of experts, including patients and public contributors, who will achieve the following objectives. 1.To develop an understanding of how, why, in what context, and with what impact, patients, service users, carers and the public involvement can be involved in the process of using evidence to change practice. 2. To develop a set of ideas or theories that help explain how patients and service users can become involved in using evidence to change health and social care practice. Initially, will review the literature to find out what we already know about how patients and the public can be implementers of research evidence to develop some initial ideas. We will then interview 40-60 people who will help us refine our ideas and theories. 3. To develop a toolkit with advice, information and resources to help patients, service users, carers and the public be involved in the putting what we know about public involvement in implementation into practice. We will hold four workshops and invite key experts to think creatively about the design of PIPER. 4. To test the PIPER toolkit. Our patient and public contributors and collaborators will select four case-studies to test PIPER . We will invite our case-studies to provide feedback and suggestions to improve PIPER so it is ready to be rolled-out and used by patients, service users, patient organisations and different health and social care organisations. 5. To better understand how our co-production approach with patients has worked in this project. Impact and dissemination: We will co-produce an impact strategy to help us achieve national and international impact. The PIPER Toolkit and its Guidance Manual will be housed with the NIHR Centre for Engagement and Dissemination for wider dissemination through key NHS health and social care networks, through patient organisations and through national organisations including NICE and SCIE. We will disseminate through the ARC and AHSN networks, HealthWatch branches and other patient organisations. We will co-produce our papers and our conference presentations.

Lay abstract: Research question: This study will address the key gap in our knowledge and practice, by answering the overall question, ‘how best can we involve patients, carers, service users and the public in the implementation of health and social care research evidence into practice?’ Background: Implementing research evidence into health and social care practice can help ensure health and social care is high quality, cost-effective, acceptable and appropriate for patients and service users. Implementation activities are usually led by health and care professionals or researchers. Patients, carers, service users and the public could be key partners and could play different roles in the implementation of evidence into practice. They could work with health and care professionals in implementation partnerships, or lead implementation activities, supported by health and care professionals. Yet their role is often neglected and we have a limited understanding of the potential roles and contributions patients, carers, service users and the public could make to implementation practice. We will address this key gap in our knowledge and practice. The specific research questions are: 1. How can patients, carers, service users and the public be involved in the implementation of health and social care research evidence into practice? 2. What types of roles, contributions and impact can patients, carers, service users and the public make to the implementation of health and social care evidence into practice? 3. How can we support patients, service users, carers and the public to contribute to the implementation of health and social care evidence into practice? 4. How can we co-produce the knowledge that supports a greater role for patients, carers, service users and the public in the implementation of health and social care evidence into practice? Realist evaluation will frame the study and co-production will run through the work packages as a cross-cutting theme in supporting patient and public involvement. Methods and timelines: WP1: (Months 0-10) We will undertake a realist literature review to try and find all the relevant studies. This review will help us develop initial theory about the possible roles of patients, service users and the public in implementation. WP2: (Months 9-18): We will undertake a set of 40-60 realist interviews with stakeholders to refine our programme theory. WP3: (Month 19-32): We will use the programme theory from WP2 to run four workshops with key experts to develop Pathways to Implementation for Public Engagement in Research (PIPER), a set of guidelines, principles and resources to support patient and public involvement in implementation. WP4: (Months 33-38): We will test PIPER using three case studies chosen by our patients and professionals, in order to produce a final version of PIPER. Impact and dissemination: We will co-produce an impact strategy for national and international impact and transformational change. Our key output, the PIPER Toolkit and its Guidance Manual will be housed with the NIHR Centre for Engagement and Dissemination for wider dissemination through key NHS health and social care networks, through patient organisations and through national organisations including NICE and SCIE. We will disseminate through the ARC and AHSN networks and though local Health Watch branches. We will co-produce our papers and and our conference presentations (with plain language summaries).

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