Title: Improving health outcome 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 (The LYNCs study)
Funder: Department of Health (England)

Abstract: Our overall research question is “What are the effects impacts costs and necessary safeguards for digital clinical communications for young people living with long term conditions and engaging with specialist NHS providers?” The research focuses on young people (age 16-24 years) with long term health conditions (e.g. diabetes cystic fibrosis sickle cell) as they tend to disengage from health services resulting in poor health outcomes. It will investigate whether and how their engagement can be improved through the use of digital clinical communication (direct patient-clinician communication with clinical content) and so improve health outcome. Young people are prolific users of digital communications (e.g. email text messaging social media web portals) and use it for health care. As such young people using the NHS present the best current opportunity for understanding how why and with what effect digital clinical communication can be used by NHS providers. Many NHS clinicians and young people have started unofficially using digital communication; this research will learn from these innovators. We expect this research will prompt a rethink about the way the NHS uses digital media for clinical communication and the implications of this for information governance. It will inform policy and commissioning of NHS services for young people with long term conditions and guide the deployment of digital clinical communication across specialist NHS care more widely. There is public interest in digital clinical communication. The scientific literature which includes many technology or disease specific systematic reviews suggests its use may improve health outcome. We seek to address identified evidence gaps: what is important to patients and clinicians cost and resource use risks and harms and understanding the active ingredients and their link with outcome. Many reviews suggest research is undertaken across disease areas.Our research has two aims: A) to evaluate the impacts and outcomes of digital clinical communications for young people living with a long term condition; B) to provide a critical analysis of the use monitoring and evaluation of digital clinical communications by NHS providers.Our objectives are:1) To engage young people including those with long term conditions in the implementation of the research.2) To evaluate and synthesise published evidence on the use of digital clinical communication by health professionals with young people with long term conditions that informs future policy and practice.3) To identify from patients clinicians clinic support staff and managers the issues concerns opportunities and solutions for the use of digital clinical communication in the NHS for a variety of clinical conditions their expectations of it their perspectives on the function of the communication and issues concerning patient safety quality of communication patient-clinician trust medico-legal issues ethics work load and configuration training and policy development and its dissemination.4) To investigate the impact of digital clinical communications on health outcomes for young people with long term conditions and on their engagement with and use of health services. Health service engagement includes routine outpatient appointments (monitoring) between appointment contacts (advice and support at the time of need) and emergency care use (unexpected/unpredicted needs).5) To describe the cost of implementation and on-going provision of digital clinical communication and how it varies across different clinical conditions to understand the value of this service to patients and clinicians to understand the cost of up-scaling in the NHS.6) To explore the use of an outcome measure for future cost-effectiveness studies which can be used across disease areas to capture the impact of digital clinical communication on engagement with health care.7) To develop and disseminate guidance for NHS providers and commissioners on policy procedures and payback in return for investment guidance on which clinical areas are most likely to benefit; and to consider the need for and design of future cost-effectiveness research.Patient and Public InvolvementTo inform the implementation of the project we will run ‘Warwick Young Researcher’ projects engaging school pupils to undertake mini-research projects to capture the perspectives of their peers on questions related to the research. We will undertake a similar activity with young people aged 19-24 years.Literature review We will i) review potential generic measures available to assess the impact of digital clinical communication ii) review the use of digital clinical communication in the UK and iii) summarise relevant legal ethical and policy issues. We will also undertake six rapid scoping reviews on topics identified during data analysis. An example might be a systematic review for evidence related to a specific type of participant intervention and outcome.Case studiesWe will identify 60 clinics providing NHS care to young people with long term conditions that are costly to the NHS both clinics using and not using digital clinical communication. From these we will sample up to 20 clinics for diversity of clinic setting disease and technology use. In each clinic we will collect data to understand what works for whom where when and why and data for exploring cost value ethics safety and impact. Data will include policy documents non-participant observation field notes interviews with up to 15 patients and where appropriate parents/carers and up to 15 clinic staff. NHS staff will extract data about clinic patient attendance A&E attendance and emergency hospital admission. Analysis will use the following approaches: qualitative case study approach a before-after analysis cost-benefit and willingness-to-accept analysis ethical policy analysis safety and risk analysis and qualitative thematic analysis related to impact. Synthesis of results and consensus meetingResults of work packages will be synthesised for presentation to a consensus meeting including young people specialist service providers and national stakeholders. Policy recommendations will be developed.Dissemination of results and policy recommendations will be to all NHS commissioning and providing organisations and to stakeholder organisations.


Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: GENERIC HEALTH RELEVANCE