Skip to main content

How people with lived experience can help shape your charity’s comms

10 August 2021

People with lived experience are the people your content (and therefore your charity) aims to talk to and exists to serve. Therefore, those with lived experience should have a say in shaping this content. This will not only help make sure they get what they need from your charity, but also that they feel heard and represented in this content in a way that is true to them.

For examples of this in action look to medical charities working with people affected by health conditions. I recently spoke to three people from three leading medical charities; Georgina Hill, engagement & impact manager at the Stroke Association, Dr Katherine Fletcher, research communications manager at Parkinson’s UK and Ruth Martin, editorial lead at Muscular Dystrophy UK about how they involve people with lived experience in shaping their comms. Each of these charities works with a group of people with lived experience of the health condition – either people with the condition themselves, or their carers or loved ones.

Here they offer their tips to help you involve people with lived experience in shaping your charity’s comms.

Before involving people with lived experience

  • Understand the goal

    “Think about what you would hope the group would achieve”, says Ruth, “be clear about that, right from the start.”

    How would you want people with lived experience to contribute? Do you want them as a sounding board for ideas? To review and sense-check your publications? To plan and actively co-create your content? To feed into strategy? Identify from the beginning what you need, and what people need from you.
  • Consider who you need

    Decide on the skills and qualities you need to best achieve your chosen goal. “Have a think about the role profile and process for involvement, so you’re setting out clear expectations for participants,” says Georgina from the Stroke Association.

    What input is your charity lacking right now? Are there particular groups of people your charity isn’t serving well at the moment?
  • Strive for diversity, in every way

    “Think about how you can get a diverse group of people to represent the community that you work with,” says Katherine from Parkinson’s UK.

    No two people’s experiences are the same, so include a broad range. Taking the example of medical charities, that could include people who have been recently diagnosed with an illness and others who have been living with it for a while. It could also include family members of those affected.

    You should also look to include a range of people across characteristics such as age, gender, ethnicity, class, disability, sexuality, and so on. Because there’s not much value in getting input from a group solely made up of white men in their 50s, unless that’s the only people you’ll ever speak to!

    Also be careful of picking your ‘nearest and dearest’. Your most dedicated supporters may be eager to help, but their experience of your charity might not represent everyone’s experience of your charity. How will you reach out to people who are not warm to your organisation?

During the process

  • Build it into your planning

    If you’re serious about consulting with people with lived experience, you need to make it part of your processes, and take it into account when planning.

    Ruth from Muscular Dystrophy UK says “we’ve actually built a reminder [to consult with the content advisory group] into our briefing for our marketing and comms team, to keep people with muscle-wasting conditions front and centre.”

    And remember: what might take you half an hour to check over might take someone else much longer. “Leave plenty of time to build the consultation with people into your project timelines,” says Georgina, “particularly if you’re asking them to input into lots of content.”
  • Be clear on the process

    Decide what exactly the process will be, and make sure the people you’re working with understand this. Will they provide feedback via email, or over a call? Are you collating everyone’s ideas, or asking people to feedback individually? And crucially – be clear on the deadlines!
  • Get specific with your questions

    When it comes to soliciting feedback on content, don’t ask vague questions like ‘what do you think?’ – get specific. What exactly do you need from them? What aspects are you looking for their input on?

    “Think hard about the questions you ask about each piece of content”, says Georgina. “You want to make sure they’re clear and will arrive at feedback that can actually make a difference to the communications you’re working on.” Georgina suggests asking people what they would like to know next, which can help inform the user journey.

After their contribution

  • Incorporate their input!

    Involving people with lived experience is pointless unless you’re genuinely willing to change your content based upon their feedback. Of course, you will have a lot of different things to consider, so you might not be able to act on every suggestion. But don’t ignore their feedback just because it’s inconvenient for you or you disagree.

    “Working with steering groups and co-producing projects is something we are doing more and more, as the contributions from people affected by Parkinson’s are so valuable and enriching,” says Katherine from Parkinson’s UK. “This way of working brings new ideas, creativity and motivation, leading to better and more meaningful engagement.”
  • Get feedback, give feedback

    Ruth explains: “One of the things I’ve learned is that the group [working with Muscular Dystrophy UK] really, really likes feedback. It can be so easy to get their input, build it into our content, and then move on. It’s always important to complete that loop by going back to the group and saying, ‘This is the difference that your work has made. This is how we’ve taken on what you’ve said’.”

If you enjoyed this you may also like:

Banner image: Malcolm Lightbody on Unsplash

Richard Berks

freelance science writer, freelance

Richard is a freelance science writer specialising in helping medical charities talk to supporters, patients, and the public about life-changing medical research.