Title: Mobilising knowledge in a Learning Healthcare System: The impact of patient involvement.
Funder: Department of Health and Social Care

Abstract: Background: Learning Healthcare Systems use integrated electronic health records to enable continuous improvement in care. Data are collected and analysed as part of routine care, and knowledge to guide improvements is then communicated back into practice through the same infrastructure, enabling rapid knowledge mobilisation. Proponents of Learning Healthcare Systems recognise that the users of such systems are as crucial to its effectiveness as the data itself. This fellowship will focus specifically on the patients as users, who contribute data and receive care within the learning system, to explore how patients could or should be involved either as creators or users of knowledge within rapid mobilisation systems.Aims:Developing the model: To identify, with multiple stakeholders including patients themselves, how, when and where patients will interact with the LHS and the opportunities for them to be involved in both knowledge creation and mobilisation in the system to design a prototype model of involvement opportunities (Study One). Implementing the model: To apply the model in practice within two clinical projects, Wound Care and Stroke Care, to deliver knowledge mobilisation cycles to improve care in Greater Manchester (Study Two) Evaluating the model: To evaluate the impact of patient involvement on knowledge mobilisation and implementation, and assess the acceptability and feasibility of involvement (Study Two, infomed by agreed outcomes from Study One). Plan of Investigation: The research will employ mixed methods, including qualitative interviews, observation, and survey measurement. Participatory codesign methods will be used to develop and deliver the knowledge mobilisation activities with patients and health professionals within two clinical exemplar projects.In Study One, interviews with all stakeholders, including patients, and process mapping will be conducted to identify when, where and how patients can be involved in the creation or mobilisation of knowledge in the LHS. Participatory design methods will then be employed to develop this into a model of patient involvement, codesigned with patients themselves. The model will consider the different patient populations involved in Wound and Stroke care and suggest different involvement mechanisms that can be tailored to be appropriate for different patients and at different points in the system. A consensus exercise will determine expected implementation impacts of patient involvement to be measured in Study Two. Normalisation Process Theory (NPT), a conceptual model for understanding and informing the collective action required to implement change, will be used to analyses the studies and consider barriers to implementation that need to be addressed in the knowledge mobilisation activities.In Study Two, the model of patient involvement will be applied in practice to support knowledge mobilisation cycles, conducted by the research fellow, in two clinical priority themes: Wound care and Stroke care. The feasibility and acceptability of patient involvement to both health professionals and patients themselves will be assessed. Impact on implementation outcomes and changes in NPT constructs before and after the cycles will be quantitatively assessed.Potential benefits to patients and the NHS: The fellowship will contribute directly to mobilising knowledge from the Learning Healthcare System to improve community wound services and stroke services in Greater Manchester, to directly impact and improve patient care. It will also contribute to NHS aims to deliver patient-centred services and to involve patients as partners in improving care. The evaluation and learning achieved will contribute to efforts to expand and improve the Learning Health System in the North West and beyond, to help achieve the potential of a continuous learning system to deliver the best quality care to patients.

Lay abstract: What is “Knowledge Mobilisation” research?Knowledge mobilisation refers to the process of getting research – the ‘knowledge’ – out to the people and places that can use it. Beyond “dissemination’, which means telling people the results of a research study, “mobilisation” means actively working to get research into practice, and working together with the users of research to understand how studies can be most useful. In health research, these users are the patients and professionals in the NHS. My project aims to understand how patients in particular can be better involved in making a new system of knowledge mobilisation effective, to get knowledge about health into practice and make a real impact on peoples’ care.Patient Involvement in a Learning Healthcare System: the Connected Health Cities programme A new programme of work in Greater Manchester, called Connected Health Cities, is aiming to change the way we currently get knowledge into practice by making it much faster and more direct. Connected Health Cities will link up different electronic health data sets - for example, the records held at hospital with those in the community. As well as improving the access to these records for different professionals in different parts of the system (for example, the nurse who supports a patient's rehabilitation in the community will have access to information from when the patient was cared for in hospital), we will be able to analyse these records together to identify useful lessons about about how to improve services.For example, if when we look at the all the data in the records together it shows that certain people take longer to recover when they are home from hospital, we can feed that information directly back to the health professionals involved in their care at home so they can better support those patients. This is called a “Learning Healthcare System” and it could make improvements in care happen much more quickly than they currently do.The Greater Manchester CLAHRC will be conducting research into how health professionals will use the data and apply the lessons learned from it. My project will study the other users of this data - the patients themselves who receive the care and whose data is collected and analysed. I will work with patients and service users themselves to identify at which points in this system patients should or could be involved. This could be as ‘creators’ of the knowledge – for example, what kinds of data do patients think should be collected? How are their experiences included in the system? It could also be as ‘users’ of the knowledge – how can patients help prioritise which improvements should be made, and can they help make those changes happen?How can we involve patients in a Learning Healthcare System? My proposed research. I will use methods that drawn on design principles to help patients imagine the Learning Healthcare System in action and how they would wish to be involved in it. I will also conduct interviews with patients, professionals and researchers to think about the best ways of involving patients and what the barriers to this might be.These methods will enable me to produce a model of how to involve patients, and then apply this model in practice, by involving patients directly in trying to make improvements to care based on the lessons learned from the data in the Learning Healthcare System. I will particularly consider how best to involve people who are ‘easy to ignore’ and tend not to be included in involvement activities, and also think about how opportunities for involvement will need to be different for different patients. As well as involving patients and carers as participants in the work of making improvements, I will have a steering group of patients, carers and service users with experience of involvement. We will think about the best ways to reach people to take part and how to support them to contribute.Finally, I will make sure that the knowledge created by the studies is itself made ‘mobile’ and communicated to the people who can use it. I will share the progress I have made with networks of ‘users’ – other health researchers, designers and commissioners of Learning Health Systems, and patient and carer networks – through research papers, presentations, and public engagement platforms such as blogs or youtube, to ensure that the model developed can be used elsewhere to support more patients to contribute to service improvements in the NHS.

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