Embedding lived experience expertise in mental health research

Lived experience is a form of expertise. At Wellcome, a global team of Lived Experience Advisors shapes our Mental Health strategy, its governance, delivery, and decision-making.

We expect lived experience to be central to most projects funded by Wellcome’s Mental Health programme, whether informing research priorities, governance, leadership, design or delivery. This can help ensure that any resulting interventions align with the needs and priorities of the people who will use them.

Lived experience is the knowledge, insight and expertise that comes from having first-hand experience of mental health challenges, either now or in the past. 

Lived experience experts should self-identify as having lived experience. They do not need to have been diagnosed by professionals or have accessed formal mental health services, and we recognise it may not always be safe or possible to do so. 

Lived experience of mental health problems is different from the experiences of carers, family members or support workers of people with mental health challenges. These experiences are another important form of knowledge and expertise, which may be relevant to include when shaping projects or studies (for example, those focusing on interventions for carers or family members), but are separate to people with lived experiences of mental health challenges. 

Lived experience experts are not research participants. Lived experience experts use their personal knowledge and expertise to inform in the strategic direction, governance, design and delivery of the research. Participants take part in the studies and experiments (for example, focus group discussions and questionnaires).

These considerations have been developed based on common questions that grant applicants have asked us over the years. We hope they are useful to you when planning your own applications.

• Make lived experience central to all major project decisions and stages of research. Involve people with lived experience in the research design, delivery, implementation, governance, monitoring and dissemination. 
• Embed lived experience across project roles, for example, coapplicants, peer researchers, collaborators, advisors or workshop participants. Identify a lived experience lead who will be accountable for this aspect of the work.  
• Include a diverse group of lived experience experts with specific and relevant knowledge and experience. One person cannot speak on behalf of multiple communities and contexts.
• Consider how you will reach and collaborate with people from the communities you are researching. This may involve building relationships with community-led organisations and networks. Where appropriate, formalise these partnerships in your application. 
• Recognise lived experience experts as colleagues and value their input as you would with any other member of the project team. 
• Budget for and compensate people who provide lived experience expertise. This budget should reflect the scale and ambition of the project. Include all costs associated with working with lived experience experts, including contingency costs for unforeseen activity that cannot be predicted at the application stage. Consider the logistical challenges of compensating people during the setup phase of your project (for example, after funding has been confirmed but before grant money can be accessed).
• Consider the training and development needs across the team regarding lived experience involvement. Include lived experience experts in your training and professional development plans (including developing transferable skills), and budget appropriately. 
• Build a positive, safe, and supportive research environment for everyone, including lived experience experts, to thrive.
• Demonstrate an understanding of universal safeguarding policies. Ensure there are routes for escalation of personal and safeguarding concerns that are grounded in organisational policy. These should apply across the team, including, but not limited to, lived experience experts. 
• Provide management support and communication channels for everyone involved in the team, including for any partner organisations (for example, lived experience-led and community-led organisations).
• Acknowledge the contribution of lived experience experts to your project, for example, by naming them on your applications and research outputs or papers, if they wish to be named.
• Consider the sustainability of relationships with lived experience experts beyond the lifespan of the project. Consider if and how lived experience contributors want to be updated about the impact of the project beyond the duration of the funding.
• Understand that a person’s lived experience informs their expertise, but it is not the sum of their expertise. Lived experience experts contribute knowledge, ideas and expertise. They may choose to share personal information in some contexts, but it should always be their choice what they share, and how and when they share it. 
• Remember that lived experience involvement is complex and is best learnt through practice. This is an iterative and reflective process. Consider how you will document the way lived experience has informed the progress of your project, including in shaping key decisions.  

We are open to any approaches to involvement suited to the needs of the project, but suggest multiple methods are included across multiple stages. We appreciate that research teams will have different levels of experience embedding lived experience in research and working with lived experience experts. We recognise that approaches to lived experience collaboration will vary depending on the aims of project and the stage of the research pipeline (for example, basic or translational research).

When reviewing mental health funding applications, we consider how lived experience has been involved in a range of different ways relevant to the type, aims and ambitions of the project.

There may also be some circumstances where lived experience involvement may not be appropriate in a project. In these cases, please justify why.

Please note that Wellcome will not cover any costs associated with the development of applications.

Research aiming to address youth mental health challenges should embed children and young people's involvement in project design, governance and delivery. Additional considerations for embedding the lived experience of children and young people include:  

• Consent – Although formal consent is not typically required for lived experience involvement, it is important to ensure that children and young people consent to their involvement and that assent is obtained from parents or caregivers. Consent and assent should be captured and stored in line with organisational policies.
• Accessibility - Activities must be designed and delivered in ways that best support children and young people to contribute. This may include the use of interactive formats, flexible scheduling and the provision of age-appropriate and comprehensible materials.  
• Safeguarding – Steps must be taken to ensure the safety of children and young people (for example, risk-management processes, designated safeguard contact and appropriate escalation pathways). We encourage you to seek guidance from existing organisational safeguarding policies and procedures.  
• Recognition of time – As with other forms of lived experience involvement, children and young people should have their time appropriately acknowledged. This may include provision of financial remuneration, gift vouchers, developmental opportunities and crediting children and young people in project outputs. 
• Recruitment – Consider which children and young people are most relevant to the research topic and how to reach them in ways that are ethical, inclusive and appropriate. You may wish to recruit children and young people independently or enlist the support of existing youth groups.  
• Power dynamics – Plan how to minimise imbalances between researchers and children and young people. Strategies may include co‑facilitation, transparent decision‑making, pre‑briefing sessions and creating environments where children and young people feel able to challenge or question.

Additionally, applicants may wish to consider whether the knowledge, insights and expertise of parents or carers can add value in addition to children and young people alone. The involvement of parents and carers should complement, not replace, the perspectives of young people themselves.

In developing youth involvement plans, applicants may wish to engage with existing tools and guidance. Some relevant resources include: 

• Effective Youth Engagement Practices (Global Mental Health Action Network) - a set of guiding principles for people who work with or engage with young people living with mental health conditions.
• Young Person's Advisory Group Toolkit (Generation R Alliance/eYPAGnet) – A toolkit is designed to take you through each part of the process of setting up a Young Person’s Advisory Group.
• Young Researchers: Toolkit (Dr Louca-Mai Brady and Berni Graham) – A toolkit developed to provide researchers, project workers and others with clear guidance and tools to use when supporting children and young people from a diverse range of backgrounds to be young researchers.
• Voice of the Child Toolkit (Centre for Community Child Health) - An evidence-based resource designed for researchers, service providers, clinicians and others keen to involve children and young people in their work.
• 10 for 10: Public involvement in mental health research (The McPin Foundation) – A resource in which McPin Foundation reflect on their public involvement in mental health research work, with a focus on practical matters relating to involving Experts by Experience in research.
• Co-designing with young people - The fundamentals (Orygen) - This guide aims to assist those working in Primary Health Networks and youth mental health services co-designing with young people by addressing some of the fundamental issues. 

Lived experience expertise can be embedded in mental research in many ways. Below are some examples:

Roles 

• Lead applicant
• Coapplicant embedded in the research team
• Peer researcher working on the project
• Project collaborator (including community-led organisations)
• Advisor (for example, members of an advisory or steering group focused on lived experience or embedded into a larger multidisciplinary group)
• Participant in workshops or online discussions related to the project 

Areas for collaboration

Prioritisation

• Identifying the problems to be solved
• Identifying priority topics for research

Project design and development

• Developing the funding application
• Identifying and advising on ethical considerations
• Refining and designing research methodologies
• Reviewing and defining opportunities for impact

Governance and leadership 

• Participating in steering and oversight groups
• Contributing to strategic discussions

Data collection

• Reviewing or designing data collection approaches, recruitment plans and data management proposals
• Reviewing data collection tools
• Collecting data as peer or co-researchers

Analysis and interpretation

• Exploring preliminary findings to inform how results are interpreted
• Discussing the impact of the findings 
• Identifying future research possibilities
• Identifying potential risks around implementation

Reporting and dissemination

• Contributing to or co-authoring publications (for example, checking the sensitivity and appropriateness of language)
• Co-developing outputs such as papers, presentations and blogs
• Identifying dissemination routes and methods

Implementation and process evaluation

• Reflecting on the project and how it could influence practice
• Reflecting on lived experience involvement in the programme

This is not an exhaustive list. Applicants should embed lived experience expertise across a range of project roles and areas. 

For basic science projects, for example looking at molecular, cellular or computational models, it may be less obvious where Lived Experience perspectives can feed in. Non-experts may find it difficult to comment on highly technical methodologies which don’t involve human participants. However, for most projects it will still be important to involve lived experience experts at some stages. Lived experience experts can advise on:

• whether your project will address the priorities of the communities most affected by mental health problems; how to make this the most impactful; or if another area of focus might be more impactful 
• what translational opportunities might arise from your research findings; what questions might future research explore 
• potential ethical implications may result from the research findings or potential future translational opportunities 
• how best to disseminate your findings to the community who might benefit

Additionally, you might be able to identify individuals who have both technical and lived experience expertise, who can advise on the more scientific aspects of the project. Members of your research team may be able to draw on insights from their own lived experience, if they have personal experience of a relevant mental health condition themselves. While this can be very valuable to a project, dedicated lived experience expertise should also be sought, to ensure a diversity of perspectives. 

For each stage of your project, you should consider how lived experience perspectives could inform and shape your activity, and how best to obtain these perspectives.