Title: Knowledge sharing in atopic eczema: understanding and enhancing mindlines and patientlines to improve experience and outcomes of primary care consultations and self-management practices
Funder: Department of Health and Social Care

Abstract: BackgroundThe NIHR has invested in many atopic eczema (AE) studies yet little is known about mobilisation of this knowledge to primary care. AE is a common skin condition that impacts on wellbeing and quality of life. It accounts for many primary care consultations and some costly referrals to secondary care. AE has a high self-management demand and some patients report low levels of satisfaction with primary care consultations. Studies have shown that clinical decisions are often based on mindlines, which are defined as collectively reinforced, internalised tacit guidelines. It is proposed here that patients have an equivalent basis for their decision making namely patientlines. Given the extent to which eczema has to be self-managed it is essential that new research knowledge is mobilised to patients and clinicians to achieve synergy between mindlines and patientlines and so increase scope for jointly understood and agreed treatment plans. Theoretical context The study is based in the narrative paradigm of knowledge mobilisation and will be underpinned by three theoretical constructs that are relevant to knowledge mobilisation and congruent with my own knowledge and experience: i. mindlines and patientlines; ii. knowledge sharing and iii. co-design. Aims Phase 1 (months 1 to 18)Investigate the processes and interactions by which eczema mindlines and patientlines are developed by clinicians including nurses, doctors, health visitors, practice based pharmacists and patients From the ethnographic data create tentative models of mindlines and patientlines to be validated by patients and clinicians Phase 2 (months 19-48) Co-design and implement eczema specific knowledge sharing activities that will effectively and synergistically inform patientlines and mindlinesEvaluate the impact of knowledge sharing activities across researcher-patient-clinician boundariesMethodPhase 1a: an ethnographic study using observation, interviews and documentary review in one large typical GP practice will be used to discover how mindlines and patientlines are formed. Tentative diagrammatic models will be developed. Phase 1b: the tentative mindlines and patientlines will be validated through annotation of the models and qualitative interviews with patients and clinicians in 5 GP practices. Phase 2a: a co-design team including patients with AE, parents and clinicians from the five practices in phase 1. Exact numbers will not be known until practices are recruited but will include a minimum of 3 clinicians and 5 patients. In addition 2 members with significant PPI experience and the leader of the Nottingham support group together with a representative from the National Eczema Society will be invited to join. This will ensure representation from a range of stakeholders. Collectively the group will analyse how the new knowledge about how mindlines and patientlines are developed can be used to design novel approaches to effective knowledge sharing. Phase2b: following a period of knowledge sharing in the five GP practices I will conduct a series of qualitative interviews with patients, parents and clinicians to evaluate the impact this work has had on satisfaction with GP consultations and self-management. I will also measure self-assessed skin condition and perceived eczema related self-efficacy Relevance to clinical practice and benefit the public and patientsA model for sustainable knowledge sharing activity between the AE research world and primary care clinicians and patients will be developed as an output from this work. It is anticipated that the conscious effort to bring together mindlines and patientlines will ensure shared understanding resulting in more satisfactory consultations, increased self-management and potentially improved quality of life and cost savings. Although the focus of this project is on AE it is likely that the principles will be equally applicable to primary care and self-management of other long-term conditions

Lay abstract: The purpose of this project is to find effective ways in which to get any new knowledge about eczema care from research teams to patients, parents of children with the condition, and clinicians (nurses, GPs, pharmacists and health visitors) in primary care. Eczema is a common skin condition affecting around one in 5 children and 1 in 12 adults. It can cause significant physical and psychological suffering. People often see their nurse or GP with eczema but the responsibility for day-to-day care rests with the patient and this can be hard to manage. Much high quality eczema research has been completed but the extent to which findings have been applied in primary care for patient benefit is not known. Studies suggest that patients and clinicians may not have sufficient up to date knowledge to manage eczema well. Research has shown that GP's health care decisions are often based on their individual mindlines. Mindlines are ways of thinking that are formed by a mixture of personal experience, the knowledge and opinions of colleagues and experts and, to a lesser degree, research evidence. If clinicians have mindlines it seems reasonable to think that patients, particularly those living with long-term conditions such as eczema, will have an equivalent which I have called patientlines. My belief is that to have high quality, useful consultations and clear agreed self-management plans we need to find ways of ensuring that patients and clinicians are provided with shared information to guide the development of accurate and up-to-date patientlines or mindlines. In this project I will observe and interview patients, parents and clinicians in a GP practice to understand how their patientlines or mindlines are developed; the information gathered will be used to develop diagrammatic patientlines or mindlines which will be tested with a larger group of clinicians and patients to check that they are valid. The challenge is then to find ways in which to get knowledge that is relevant and of direct use to both patients and clinicians to inform their patientlines or mindlines. To achieve this I will work with a team of patients, parents and clinicians to design simple methods that will get research findings into practice. The exact way in which this happens depends on what I discover about how patientlines and mindlines are formed and also on the expertise of the team. The aim is to produce accessible, shared information that can be used as a basis for agreeing workable treatment plans. Shared information is important as patients and clinicians need to get a common understanding of the best treatment for that person and agree how they will be able to self-manage these on a daily basis. Once the new approach to knowledge sharing has been tried in practice I will interview patients, parents and clinicians to discover what difference it has made to quality of consultations and self-management. I will also ask patients to complete questionnaires about how bad their eczema is and their belief about their ability to self-manage at the beginning and end of the study. This study focuses on eczema but the principles of knowledge sharing to inform patientlines and mindlines, if effective, will be useful in many other long-term conditions.

Research activity codes: 8.4 RESEARCH DESIGN AND METHODOLOGIES (HEALTH SERVICES);7.1 INDIVIDUAL CARE NEEDS
Health categories: SKIN