Title: Realist evaluation of online mental health communities to improve policy and practice
Funder: Department of Health and Social Care

Abstract: When people experience mental health difficulties, they often look for help online. This has increased during Covid-19, because it has been harder to get in-person help. Online searches will lead them to a range of mental health peer forums (also called online communities). These are websites where people with a shared interest or concern can “post” messages to others and get their advice and support._x000D_ Online forums can be very helpful. Some people report feeling less distressed, less alone, and more able to cope. However, others have reported feeling more distressed and less able to cope after using forums. We do not know why these differences occur. This means we do not know how to make forums better, or which ones should be offered to people seeking help._x000D_ _x000D_ We aim to find out: how online mental health forums work; why some work better than others; and why some people find them helpful and others do not. Based on what we find, we will work with people who use forums; people employed to support forums; and people who set up and fund forums; to develop tools to improve the design and support from online mental health forums._x000D_ _x000D_ Throughout the research we will work closely with our three Expert Groups. Group 1 (PPI) includes people with lived experience of mental health problems and using forums, and people who support the forums (called moderators). Group 2 (Host) includes people who design and run the forums. Group 3 (Impact) are senior people who can help make sure our findings make a difference to policies and procedures which determine how forums are designed and funded in future_x000D_ _x000D_ We have three overlapping work-streams. In work-stream 1 (1-18 months), we will pull together relevant knowledge from research literature. We will also interview people who currently use, support, or have studied online forums. Based on what we find, and with the support of our Expert Groups, we will come up with ideas about how online forums work, and develop some specific theories to test. _x000D_ _x000D_ In work-stream 2 (6-30 months), we will test and refine our theories in a range of different mental health forums. We will use surveys to measure impacts for different groups of forum members. We will use interviews with forum members and people who support them to understand their experiences. We will analyse what is happening in the text of the forum conversations. At regular time points, we will share our findings with our Expert Groups, and work with them to come up with our final theories._x000D_ _x000D_ In work-stream 3 (2-34 months), we will use the theories to create tools and training designed to improve peer online forums. We will work with our Expert Groups to ensure these are designed and shared in ways that make them easy to find and use. We cannot say now exactly what the tools will be until we have done the research. However, the PPI work we did told us people wanted: attractive ways to promote online mental health forums; guidance for designing and setting up online mental health forums; training for people who support forums; an online space for these supporters to work together to build up this role and their skills._x000D_ _x000D_ Our team includes people with experience of seeking support for mental health problems; people who fund, run and support online mental health forums; and people with the skills to collect and analyse the data. Our outputs will be shared with people taking part in the research, and then widely across mental health and academic groups.

Lay abstract: Aims-To improve uptake, safety and usefulness of online mental health communities _x000D_ _x000D_ Research Questions_x000D_ What are the impacts of using online mental health communities for people experiencing mental health difficulties? How, why, in what contexts, and for whom are these impacts generated?_x000D_ What are the roles of community moderators and how do they impact online mental health communities?_x000D_ How can evidence-based theories of online mental health communities be used to inform best practice guidance and support?_x000D_ _x000D_ Background-Online mental health communities are dedicated support platforms aimed at helping individuals to share, discuss and solicit information and support related to mental health. They offer 24-hour opportunities for members to feel understood, access important information, make friends, use their own experiences to help others, whilst managing how they present themselves online. Online communities can be an important gateway to offline support as people test out sharing, challenge stigma, and are signposted elsewhere. They can increase access to support where face-to-face support is limited _x000D_ However, online communities have potential to cause harm. Information shared can be misleading, inaccurate, harmful, or triggering. Hearing about the experiences of others can exacerbate low mood and risk of harms, create dependency and generate unrealistic expectations and greater anxiety about one’s own condition. Normative and reductionist ideas about health may leave some users feeling misunderstood or even bullied, and people in mental distress may be particularly vulnerable to the negative impacts of this behaviour. Members may be worried about how their data may be used by hosts relying on advertising or data exploitation as a funding source. _x000D_ There is an urgent need to understand how online communities impact on mental health outcomes, for whom, and in what context. This will inform how online communities are commissioned and designed to ensure they are safe and useful._x000D_ Methods-Realist informed mixed methods evaluation, with multiple case studies to co-design theory informed best practice guidance tools for online mental health communities. Cases are theoretically-sampled communities. Mixed-methods include: a realist informed review of existing literature and stakeholder theories; qualitative interviews with community members, moderators and hosts; quantitative surveys of community members; corpus-based discourse analysis and natural language processing of “real time” contextualised posts; co-design of best practice tools and implementation strategy._x000D_ Timelines (months): 0-2 study set up, and whole team training. 1-18 programme theory development from literature and stakeholder interviews; 6-30 programme theory testing in online community case series; 2-34 co-design of best practice tools. _x000D_ Anticipated impact- Knowledge exchange video/animation will guide referrers and people with mental health difficulties in choosing online communities. E-learning curricula and a community of practice will support community moderators in this challenging role. They will be freely accessible through the NHS Learning Hub, and charity-led peer support networks. Best practice design principles, a characterisation framework, and evaluation guidance will be developed to complement the NICE Evidence Standards Framework for digital health technologies. These will guide policy makers, commissioners and community hosts in their decision-making

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