Improving health outcomes for young people with long term conditions: The role of digital communication in current and future patient–clinician communication for NHS providers of specialist clinical services for young people – LYNC study protocol

BACKGROUND: Young people living with long term conditions are vulnerable to health service disengagement. This endangers their long term health. Studies report requests for digital forms of communication – email, text, social media – with their health care team. Digital clinical communication is troublesome for the UK NHS. AIM: In this article we aim to present the research protocol for evaluating the impacts and outcomes of digital clinical communications for young people living with long term conditions and provide critical analysis of their use, monitoring and evaluation by NHS providers (LYNC study: Long term conditions, Young people, Networked Communications). METHODS: The research involves: (a) patient and public involvement activities with 16–24 year olds with and without long term health conditions; (b) six literature reviews; (c) case studies – the main empirical part of the study – and (d) synthesis and a consensus meeting. Case studies use a mixed methods design. Interviews and non-participant observation of practitioners and patients communicating in up to 20 specialist clinical settings will be combined with data, aggregated at the case level (non-identifiable patient data) on a range of clinical outcomes meaningful within the case and across cases. We will describe the use of digital clinical communication from the perspective of patients, clinical staff, support staff and managers, interviewing up to 15 young people and 15 staff per case study. Outcome data includes emergency admissions, A&E attendance and DNA (did not attend) rates. Case studies will be analysed to understand impacts of digital clinical communication on patient health outcomes, health care costs and consumption, ethics and patient safety.