These guiding principles are for anyone who introduces people with lived experience to organisations to work on research or commercial projects. They were created in collaboration with lived experience expert Chris Frederick, Founder of Project Soul Stride who has contributed to 180+ cross-sector engagements across NHS, public health, academia and grassroots organisations.

We have organised the princples by the stages of an introduction, from before you refer someone, through to once they've joined. They're written to be practical rather than exhaustive, and we share them in the hope they're useful to anyone doing this work.

‍

What is lived experience and why are introductions important?

Some of the most valuable contributions to research and social projects come from people with direct, personal experience of the topic being studied. Lived experience can include health conditions, a life circumstance, a specific environment, or a system someone has navigated. In research and healthcare, these contributors are often called "lived experience experts" (or LXPs). Involving them well makes research more relevant, more ethical, and more likely to produce something that actually works for the people it's meant to serve.

But there's a step that often influences whether a collaboration succeeds: the introduction.

Lived experience experts are frequently brought into projects by a third person, a connector, a colleague, someone who knows both sides and vouches for the fit. That person is the "introducer." It's easy to treat this as a quick referral and simply pass along a name, make the connection, and step back. In reality, the introducer holds real responsibility, before, during and after the connection is made.

‍

Start from expertise, not vulnerability

Much of good practice is about making sure the right support is in place, but support should never inadvertently position an LXP as fragile. The strongest partnerships are reciprocal, they make support available while recognising the LXP as an equal contributor. The aim is to remove unfair burdens and barriers, not to remove the person's ownership of their own involvement. As you work through the principles that follow, remember to start from expertise, not vulnerability.

‍

Phase 1) Before you refer someone

‍

1. Gather the details first, so they can make an informed decision

Before referring someone, make sure you have the key project information to hand, including:

• What the work involves 
• The time commitment
• The full project team
• How they'll be paid and in what format (bank transfer, vouchers)

If you don't have all the information yet, be honest about what you're still finding out and when you'll know, and give them enough time to think it over before committing. Nobody should be asked to say yes to something that's still half-unknown.

‍

2. Screen the organisation before you introduce anyone

Ideally, have a conversation with the organisation first to understand their approach to lived experience work. Ask practical questions like: 

• What are your processes for onboarding and supporting LXPs? 
• Can you accommodate different ways of working and flexible payment options like vouchers, documents in accessible formats, adjustments to how meetings run? 
• What happens if something goes wrong partway through? 

Screening for this early lets you spot and address potential issues before the person joins, rather than after they've already committed.

‍

3. Make it okay to say no as part of the process

Sometimes the right outcome is for someone to decide that a project isn't for them before it starts, or partway through. Treat that decision as legitimate and a useful outcome in itself, not a failure. Withdrawal shouldn't carry guilt, reputational consequences, or a sense of having let anyone down, and an LXP should never feel they have to see something through simply because they committed to it.

Sometimes not all elements of a project will work for someone, so make it clear that stepping back is always an option, and that choosing it won't affect how they're regarded or whether they're approached about future work. 

‍

4. Confirm payment processes and options before they commit

Payment and contracting isn't just admin. Financial arrangements can carry additional stress or practical consequences for some people. Employment status and payment method can matter for different reasons, so how you talk about them matters as much as the details. Check the practicalities with the organisation early: 

• How much someone will be paid and whether this is in line with the NIHR
• How often they will be paid (every month or after specific meetings or deliverables)
• Whether options like vouchers or split payment arrangements are possible 

Frame it around making the arrangements work for the person, rather than treating their needs as a problem to be managed. Discovering restrictive terms late can be enough to make someone walk away and it's far more stressful when it comes after they've already committed.

‍

Phase 2) Making the introduction and scheduling the first meeting

‍

5. Arrange a joint meeting before anyone commits

Before asking someone to join a project or commit to working together, offer a call or in-person meeting with the key people involved. This helps both the LXP and organisation work out whether there's the right chemistry, and whether the project suits the person emotionally and practically. Lived experience work asks people to bring their personal history into the room, and that only works when they feel part of a team that knows and respects them.

‍

6. Make sure the right information is shared before the joint meeting

Information to share with the organisation:

It can help the people running the project to understand relevant context about the LXP before they meet them, with their agreement. This might include their professional background, aspects of their lived experience, and their preferred ways of working. Crucially, the LXP decides what is shared: it's their choice what information about their lived experience, background and working preferences is passed on, and nothing should be shared automatically or without asking them first.

If no one on the project team knows anything about them, this can make a person feel slotted in to tick a box rather than brought in for what they offer. In contrast, if the team knows their experiences and working preferences before meeting them in a joint call, this sets a very welcoming and supportive tone.

Information to share with the LXP:

Before the first meeting, share short bios from the organisation’s team and, where useful, LinkedIn profiles of everyone involved. Walking into a session already knowing a little about who your teammates are, and what they bring, makes a big difference to how safe and connected an LXP feels. Nobody should be joining a call unsure who anyone is or what their credentials are.

‍

7. Keep a slow and steady pace

Excitement and a tight deadline can push the early stages along too fast. Being complimented, being invited onto something with a well-known organisation, or the chance to step into a bigger role can all make it easy to say yes before there's been time to properly consider fit. As the introducer, protect that space. Build in a pause after the referral and joint call so the person can ask questions and decide whether the project is genuinely right for them, rather than being swept along.

‍

Phase 3) Setting up to work well and handing over

‍

8. Don't leave the person you've introduced to navigate contracts alone

Chasing payment terms, going back and forth about contracts with legal, and negotiating rates is draining for anyone, and can be especially hard for an LXP who may already be managing other pressures. But you can help by offering to act as their advocate or facilitator to flag contractual issues early, help them understand what's being asked, and make sure they're not left to navigate it on their own.

‍

9. Check whether there's someone else they can connect with

Ideally, an LXP should have someone they can build a personal connection with on the project team, ideally another person with lived experience, or just someone to turn to if things get hard. Think about this deliberately rather than leaving it to chance. Being the only lived experience voice, or feeling unable to build rapport with others on the team, can leave someone feeling isolated even in a full room. If you’re not working on the project team yourself or unable to support the LXP, think carefully about who you can ask to support them informally and help make those connections happen.

‍

10. Make onboarding materials accessible

Check how each person likes to communicate, and make sure onboarding documents, contracts, pre-reading, timelines and project trackers are in a format that works for them (not just lengthy articles and PDFs). Sometimes a short audio note or a video explaining how the project is organised is far more helpful. LXPs shouldn't be expected to use all the same technology, apps and project software as office workers or researchers who've been in the industry for years. Where materials are technical, provide their own clear version that sets out what's needed from them for each deliverable, what's expected each week, and what will happen at each meeting and between meetings.

‍

11. Treat introductions as an ongoing relationship

An introduction isn't just a hand-off. The person is trusting you, and that trust deserves care both before the project and throughout it. Check in at regular points to see how they're getting on. Make it clear early that they can come to you at any time, formally or informally. And remember that a good introduction opens the door to future work together, so it's worth getting right.

‍

If you've introduced lived experience experts to projects, been introduced yourself, or have a perspective on anything we might have missed, we would love to hear from you.

You can reach us at hello@sci-translate.com‍