Lived experience panels
and co-production

It is important to involve experts through experience in co-production. Involving such experts will allow for their skills and experience to be considered in planning and shaping services and activities, ensuring that they are fit for purpose and meet local needs. 

Lived experience (or experts by experience) panels are becoming increasingly more popular in the co-pro landscape, emphasising the growing recognition of their value.  

Such panels, however, require to be carefully facilitated, especially in cases where the subject matter has the ability to restimulate trauma from past experiences.  

There has been a significant amount of evaluation and research in this subject area, and here are some of the main things to consider when thinking about introducing a lived experience/experts by experience panel.

Is this the right approach?

Supporting people with lived experience can be resource intensive and, in some instances, may require you to adapt how you and the rest of your team work.  

It is useful to ask yourself when planning any type of experience panel, whether you have the relevant internal knowledge or practice gaps that need to be addressed prior to recruiting members. 

This brief self-assessment (Word document) may be useful (adapted from a Tamrack Resource).

Always remember the creation of a panel is not a tick box or an alternative to wider engagement. People with lived experience can represent their own views and experiences and bring wider reflections if they are part of a group or network and are actively encouraged to seek views from these contacts.  They cannot be expected to comment on behalf of entire populations or groups.  

Purpose and goal

Once you are confident that you can successfully support a lived experience panel it is important to be clear about the purpose and goal of the panel.  This will include:  

• Determining areas where lived experience will make an impact. 

• Outlining the purpose, objectives and expected outcomes of the panel. 

• Being transparent about the goals and clearly articulate expectations for the panel – what influence will they have, what the timescales/length of involvement is, what type of time commitment will be expected, what type of activities are anticipated. 

• Identifying who do you want to involve, what type of experience they need, how you anticipate recruiting and what resources you have to support the panel.

If aspiring to co-design and co-produce, consider equal numbers of ‘lived experience individuals’ and professionals.  Panel size may vary, and be dependent on resources available.  A manageable panel should normally not exceed 20 members.  

Recruitment

Create an outline document – detailing all the information considered when identifying purpose and goals.  This document, which might be similar to a job description, should explain the opportunity, identify any experience/role requirements, identify support available/offered and describe the any application process and deadlines.     

Publicise the opportunity – create an advert (using information contained in the outline document) what can be shared through existing channels, local networks and provider organisations with direct access to service users. Or alternatively use more targeted recruitment if your project is about a specific community/ condition. Consider how you will select people and the process of short-listing if you have too many people interested. 

Consider the value of having an informal chat – talk with individuals before offering them the opportunity. It may also be appropriate to hold an information session as part of the process for people to find out more and ask questions. 

Potential panel members may have their own agendas and perspectives, based on their own backgrounds. It is, therefore, important to consider this as part of your recruitment processes. 

Ensure you have also considered wider methods of engagement – these can support your project/programme of work in addition to having people with lived experience as part of your governance.

Role clarity and support

In addition to setting out a clear role outlines when recruiting panel members, it is important that ongoing support is maintained ensure and encourage participation. The following methods can help you provide the appropriate clarity and support.

Induction session – Provide a general induction session where all panel members can come together at the beginning of the process. This will allow everyone the opportunity to meet and get to know each other, to ask questions and to gain clarity as to roles and activities going forward. 

Working agreement – An induction session is also a good opportunity to start to discuss the development of a working agreement which will set out expectations and requirements from everyone involved. 

A working agreement will typically identify the overall purpose, Individuals tasks/expectations (and where appropriate identified named people – minute taking etc.) membership requirements, remuneration/expense arrangements, support tasks, communication preferences and ongoing meeting arrangements as well as meeting etiquette.    

This template (Word document) will help get you started.

Contact person

There should be one main point of contact identified for all panel members responsible for the panel facilitation and co-ordination. 

Resources and ongoing engagement

The panel should be provided with resources – including access to data, information, training and capacity building opportunities, and any necessary administrative support, to help fulfil its role effectively.    

Agree a regular meeting schedule – this should accommodate the availability of all panel members and meetings should be accessible, which may include providing transportation or childcare support.  

Parameters and guidelines should be set out – this allows for a safe space to be created where all panel members feel comfortable sharing opinions and experiences.   

Flexible schedules and emotional support resources – these should be provided, where appropriate, for panellists with trauma in their past to identify, respond to, and prevent emotionally distressing triggers and re-traumatization. 

Open and honest communication – this can be implemented by encouraging constructive dialogue, sharing of differing viewpoints, and demonstrating that the input from the panellists is impactful and essential. 

Areas of the process where the panel will be actively involved in decision-making and have an equal say in shaping the work’s direction should be identified clearly within the purpose. 

All of the above, where possible, should be included in the working agreement developed collectively by the whole panel. 

Training and capacity building

Opportunities for training and capacity building activities may be necessary within a lived experience panel. Remember it is important that everyone has access to equal knowledge to ensure that they are all speaking the same language and feel confident enough with any topic to confidently participate.

Remuneration (valuing peoples time)

Panel members should be remunerated where possible to ensure fairness, inclusivity and sustainability whilst recognising the importance of their contributions. This remuneration can take many forms and will be dependent on the resources available. This is one of the most complex parts of co-production and is very individual to those participating. 

We suggest reading the following guidance documents for information.  

Payment for Involvement Playbook - The Social Change Agency 

Research - paying participant expenses and compensating for time: guidance

Evaluation and feedback

Time should be taken to regularly review what is working well and what could be improved (from everyone’s perspective) so that any adjustments can be made. 

This may involve assessing whether goals are being met and where efforts are making a positive impact on the project in question.   

Appropriate mechanisms should be agreed and implemented to record all panel members feedback, experience and improvement suggestions as well as how the co-production journey is recorded and expressed. 

Guidelines for Best Practice Around Lived Experience Involvement from Leeds Mind.

Seven steps to develop an organisational lived expertise engagement framework from Mental Health Lived Experience Tasmania.

Engaging people with lived experience: best practice, challenges and opportunities from The Alliance.