Title: Effectiveness and cost-effectiveness of A Digital social intervention for people with troublesome astHma prOmoted by primary care Clinicians (AD-HOC)
Funder: Department of Health and Social Care

Abstract: Research question Does promoting engagement in an online health community improve asthma control and quality of life? Background Of 4.3 million adults living with asthma in the UK, up to one third experience suboptimal control. Poor asthma control has major impacts: 93,000 people are hospitalised annually, with 121,000 A&E visits and 6.3 million primary care consultations/year. Asthma costs the UK &pound;1.1bn/year. UK asthma mortality is amongst the worst in Europe. Digital social interventions are novel in healthcare and have potential to impact health on a large scale, for example, NHS Digital Facebook groups to promote cancer screening. Evidence of effectiveness is sparse and robust large-scale evaluations are needed. Online health communities (OHCs) now exist for asthma and many other long-term conditions. We have shown that accessing an online asthma OHC facilitates inhaler taking. This is mediated through a core of very active users, 'superusers' in the Asthma UK OHC, who are highly motivated lay individuals who exhibit judgment about the complexity of coping with asthma and the limits of their advice. The rapid move to online healthcare provides a timely context in which to test whether primary care can promote engagement with OHCs. Aims and Objectives Test the hypothesis that primary care can promote engagement in the Asthma UK OHC to improve asthma control and quality of life. Co-develop a structured intervention by primary care clinicians to promote engagement with the Asthma UK online community, and a questionnaire to identify and recruit study participants Co-develop the methods to evaluate the intervention Optimise safety and effectiveness of patients engagement and OHC moderation process Test feasibility and acceptability and effectiveness and cost effectiveness of the intervention Methods Co-develop with stakeholders a questionnaire survey and structured intervention, informed by social support theory (Workstream 1, WS1) Develop robust methods, including health economics modelling, through the Asthma UK Centre for Applied Research Trials Methodology Platform (WS2) Develop a set of recommendations from qualitative and network science analyses of ten years of discussion threads in the Asthma UK OHC (WS3a); and evaluate OHC moderators and users experiences (WS3b) Complete a randomised feasibility study (50 patients; 3 GP practices) (WS4) Complete a randomised controlled trial (468 patients; 50 practices) with asthma control as primary outcome (WS5) Timelines of delivery Preliminary work (WS1-3) complete by 24 months. Feasibility/acceptability study (WS4) by 36m. Definitive trial and health economic evaluation (WS5) by 60m. Anticipated impact, benefits to patient and the NHS Findings have potential to improve asthma control and QOL on a large scale within 5 years of completion. By publishing robust trial and health economic evaluation and working with policy makers and guideline development groups our findings will alter national, European and global guidance on asthma. Dissemination A dissemination programme, co-developed with the PPI group, charity representatives and our knowledge exchange lead, will tailor media and messages to audiences (patients, carers and public, NHS organisations, academia, policy-makers, government agencies) to influence health policy and delivery in the UK and globally.

Lay abstract: 4.3 million adults live with asthma in the UK; more than a third of them experience troublesome asthma symptoms and many experience anxiety. Supporting self-management for people with long-term conditions like asthma has proved difficult in the past. New approaches are needed. Online health communities are beginning to be used in healthcare, for example NHS Digital Facebook groups to promote cancer screening. Evidence that they make a real difference, though, is sparse. Online health communities could represent a beneficial untapped means to help the NHS treat people with long-term conditions, but research is needed. Using asthma as an example, this programme will deliver research of the required high standard. If engagement with online communities works for people with asthma, then it is likely to work for people with other long-term conditions. We found that in an online health community up to 95% of requests for information received replies. In the Asthma UK community, peer advice helped people with taking their inhalers. Members of the community gained a sense of reward through helping and interacting with peers. Information and support spread through online communities thanks to a small number of very active superusers' (knowledgeable people who are regularly active online). Superusers act as catalysts to bind an online community together and help to maintain it. Only ten superusers are needed for an online community of 1,000 people to flourish. These communities do need moderation from healthcare professionals to ensure that the advice being given is relevant and correct. Our PPI activities revealed that just having someone to talk to, who understands your condition can sometimes be all that is required to relieve anxiety and potentially avoid an exacerbation. Our aim is to find out whether general practice teams can promote online peer support to help people with troublesome asthma experience fewer asthma symptoms and enjoy a better quality of life. How will we do this? Throughout this project we will continue working closely with people with asthma. We will: Through a survey, identify people with troublesome asthma, and via their GP, invite them to join the Asthma UK online health community Design the best way of evaluating the impact of joining an asthma online health community Maximise the safety of online communities through developing recommendations for moderators Find out the best ways to encourage people to participate in our study in 3 GP practices Using the best research methods, test the impact of joining an online health community on the health of people with troublesome asthma from 50 GP practices If successful, we will work together with our PPI colleagues to promote this model nationally and internationally for asthma, and take it forward for people with other long-term conditions.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: RESPIRATORY