Title: Mobilising knowledge to patients and wider publics. What works and who does it work for?
Funder: Department of Health and Social Care

Abstract: This project addresses practical knowledge mobilisation (KMb) and KMb research in involvement arenas described by sociologists as ‘knowledge spaces’. These are where people with different sorts of knowledge meet, to share perspectives about an issue. Knowledge spaces in health and social care may involve several professionals (researchers/clinicians/managers/commissioners/public health officials, etc.) engaging with lay publics (patients/carers/citizens and communities). Examples include: Patient/community forums working with researchers/service development initiatives governance bodies with patient/public representatives overseeing research, funding, service provision or commissioning activist groups campaigning about patient safety or service provision. Policy makers and funders identify patient and public involvement/engagement as a priority, Ideally knowledge is mobilised in both directions, to inform individual health/lifestyle decisions, and to design/commission better services/interventions. But if done badly it can be experienced as tokenistic and alienating. Interactions between multiple stakeholders and their different relationship with organisational, social and policy contexts make these ‘knowledge spaces’ intrinsically complex. This makes it implausible that a single approach to addressing KMb will be straightforwardly transferrable to all settings. By combining a realist review with participatory action research methodology KMb mechanisms will be identified and used to tailor and trial individual KMb strategies. Community based knowledge champions will be identified and supported. By supporting educators involving patients and communities in medical teaching, this learning can be embedded in developing curricula. Research question: In complex cross-sectoral health ‘knowledge spaces’ which include multiple stakeholders, what enables the KMb that addresses different stakeholder priorities and what can be done to foster that process? Key research aims are to: map support for patient, public and community access to research evidence and information about opportunities to influence research and care as complex programmes develop methodology for active KMb in multi-sector knowledge spaces in health research and care advance theoretical understandings of structures and processes. promote the practice and teaching of patient and public involvement as KMb Plan of investigationThere are two complementary elements: applied KMb and KMb research. These are largely enmeshed through use of a participatory action research design, but can be differentiated in terms of: Applied: identifying stakeholders’ KMb priorities, developing strategies/skills to address them, supporting community knowledge champions and through work with educators develop teaching of involvement as KMb in medical school curricula Research: developing/evaluating this methodology in different types of knowledge space and advancing theoretical models of cross-sectoral knowledge spaces in health. Participant groups have been chosen to represent knowledge spaces with different constituent stakeholders working in different contexts. This will directly engage with and influence local KMb activities. Key partners in this include researchers and service providers working with these groups as well as health librarians and medical educators. By explicitly supporting medical educators in Cornwall and Ethiopia to develop KMb within their curricula the project will begin to explore the potential portability of these mechanisms, including to lower/middle income economies. The research process has 5 main steps: A realist review of published evaluations and grey literature of interventions to support patient and public involvement/engagement and access to health and social care research evidence Mapping contexts, including different stakeholder KMb priorities Developing support strategies Delivering support strategies and theorising mechanisms Evaluation Steps 2-4 will be repeated through at least two cycles with each group. The theoretical and practical aspects of this work will extend beyond the completion of the fellowship. As well as embedding KMb skills locally, outputs will include both academic and practitioner papers and methodological resources. The inclusion of pedagogical application raises KMb between professionals, patients and communities at an early stage of professional development, something that could have wider impact in future.

Lay abstract: Aims This project is about using existing knowledge of what works in public involvement/engagement and developing new understandings of how we can communicate better. It will: • map existing support for people to access evidence and influence research • develop ways to match support to particular circumstances and requirements • improve our understanding of what works and why • embed what we learn in our practice and teachingBackground Health research, care services, and public health advice all aim to be useful to people in their everyday lives. So they need to include an understanding of the real world experiences of patients and communities. For people to make informed decisions about their own health, or about the services needed in their communities, they need to be able to access clear information about what works. This is not about telling people the ‘right’ answers. It is about having ongoing conversations in which knowledge is shared in both directions. These conversations can also support organisations to understand the needs of their communities better, something policy makers and funders identify as vital. But when involvement is not done well it can feel tokenistic and off-putting. This proposal is to support patient and community groups, researchers and health professionals to develop ways of working that help them to communicate with each other more successfully. In doing this we will learn more about what works to move knowledge between those who know it and those who need it. This will be used to develop practical resources, which can help other groups and inform the way we teach in medical schools. Design The project starts by looking at what is already happening. A review of published papers, reports and websites will explore detailed methods for supporting patient and public involvement, and access to health research. Members of the public advisory group will be involved in helping to scope this review. It will ask: what worked? who did it work for? why did it work? what were the circumstances? The review will inform our theories about how things work, so we can map different methods to different requirements. Results will be tested with four very different groups to each create their own strategies for sharing and accessing knowledge. They will try out these strategies, identify what worked, what is missing, then adapt their strategy and try it out again. Working both with professionals and the people they involve will enable this learning cycle to continue beyond the end of this project. This research method is called participatory action research. As well as supporting learning this design helps people taking part to have more control of research processes than is usual in academic research. This gives research participants a greater role in shaping the knowledge produced. The key groups in this project are based in Cornwall and Devon. Some are mainly involved with researchers, while others mainly with health service providers.The Health and Environment Public Engagement group (HEPE), an informal network working with researchers in the European Centre for the Environment and Human Health and their partners in Cornwall. NHS Kernow Patient Reference Group, people from a range of backgrounds who scrutinises and comment on the plans and actions of the Clinical Commissioning Group for Cornwall and Isles of Scilly from patient and community perspectives. West Cornwall HealthWatch, a voluntary, independent campaigning health watchdog in West Cornwall. The PenCRU Family Faculty, working with Child Health researchers on issues affecting families including children with neurological disabilities. Working with these groups will give practical support for local organisations sharing knowledge. While they all focus on health, they each engage with researchers and service providers in different settings and in different ways. This will enable comparisons of different requirements. Patient and Public Involvement Members of these groups helped develop this proposal. An advisory group will oversee the project. In partnership with researchers, health librarians and service providers, training and support will be offered to those who are interested in becoming community knowledge champions beyond the completion of this fellowship. Dissemination As well as academic papers and presentations this project will produce practical resources to support other groups including: a map of different approaches, written reports, videos and audio recordings, games, activities and workshop plans. Partnership work with teachers and researchers in the medical schools in Cornwall and Wollega, Ethiopia will help make sure that learning from this project is used to shape the skills of tomorrow’s doctors and health researchers. This work will continue after completion of this fellowship.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;7.3 MANAGEMENT AND DECISION MAKING
Health categories: GENERIC HEALTH RELEVANCE