Find out how three medical charities collaborate with people with health conditions to shape their comms – everything from their day-to-day content to strategy work.
Medical charities exist for the benefit of people with various diseases and health conditions. There’s always been a strong reason therefore to make sure that these people are involved in decisions at these charities.
There are a few different ways that medical research charities can involve people with lived experience. Either people with a condition, or the people who care for them. One common practice is to involve ‘lay experts’ in deciding what research to fund – having them review research grant applications, for example. People with lived experience might get involved in the charity in other ways too, such as telling their story to support PR efforts to raise awareness of the condition, or for fundraising.
But lately, I’m interested in the possibility of involving people with lived experience in the comms work ‘behind the scenes’ at charities. I feel that people with lived experience have a lot to offer with making more ‘strategic’ decisions at charities. As well as providing their input on the day-to-day work.
I spoke to three people from three medical research charities, to find out how they’re involving people with lived experience in shaping their comms.
- Georgina Hill, Engagement & Impact Manager at the Stroke Association
- Dr Katherine Fletcher, Research Communications Manager at Parkinson’s UK
- Ruth Martin, Editorial Lead at Muscular Dystrophy UK
Why do you feel it’s important to involve people with lived experience in making decisions around your comms?
Research communications have to work for multiple audiences. The way we speak about research topics to researchers is different to the way we speak to stroke survivors or carers. It’s really important that patients are involved in making decisions on research communications, as at the end of the day, the research will hopefully have the greatest impact for their lives. It must be understandable, interesting, and sensitive to their experience.
The perspectives of patients has also given me new ideas in my communications. By understanding what patients find useful and interesting, it helps me to understand what aspects of research are most important to delve into and continue talking about.
Most of the communications we put together are for people who have Parkinson’s, their families, friends, and carers. Therefore, it is vital that we work with the Parkinson’s community to shape our communications to understand what people want to hear about and in what way. Involving people affected by the condition helps us to understand priorities and make sure we are communicating clearly and sensitively.
We work closely with people who have muscular dystrophy to make sure that we were doing things that are useful and valuable. We need our community’s input to decide if something is needed or that we are positioning it correctly, or to test the language we use. It’s just a really helpful way of testing that we’re saying the right things in the right way.
What kinds of comms activities are you involving people with lived experience in?
Right now, patients are mostly involved in reviewing communications. They will look at an early draft of new content for our website, reports or videos, and feedback on different aspects such what they think the main message is, what they find helpful, or could be improved. They’re also asked for ideas about how the information is presented, including suggesting appropriate imagery. We also ask them what they’d like to know next, which can help to inform the user journey.
We have an editorial board that helps to shape our research magazine, Progress. It is made up of seven people affected by Parkinson’s and three members of Parkinson’s UK staff. We work together to decide on topics to feature and how to present the information. The group are then involved in reviewing drafted articles and design ideas to agree on a final product.
Plus, we have a steering committee of people affected by Parkinson’s and staff organising our first online research conference aimed at a lay audience, which is taking place in November. So far, they have decided on a conference name, branding, how long the conference should be and what topics should be featured. They are now starting to think about speakers and how to communicate and share the conference invite with the wider Parkinson’s community.
Our Content Advisory Group is a group of about 25 people who have muscular dystrophy themselves or who have a family member who does, ranging from 19 years old to 70 years old and everyone in between. They’re people who live with the reality of having a muscle-wasting condition, and represent our target audience. They’re a sort of ‘patient reference group’ for any kind of content or any projects that we’re considering as a charity.
We might ask the Group to look at materials like fact sheets about specific conditions, or practical information for when you live with a muscle-wasting condition. We’re also consulting the Group on our marketing strategy. And last year, we asked for their input on our Muscle Matters webinars – a series of online events to replace our annual conference – for which the Group contributed ideas for topics.
So from the practical tangible things to the more strategic work, we get the Group to feed in and give us their thoughts and perspectives – always along the lines of whether it is useful, valuable and relevant.
What impact has this involvement had on your charity?
Our patient involvement group is an influential sounding board for our research communications. Their experience and feedback can make me re-think the way I’m approaching communications, and provides vital insight into how the communications may be received by patients. It’s most important that patients feel their experience is represented accurately and appropriately, and they find the information about research helpful. I’ve been surprised by and grateful for the level of detail in feedback and peoples’ willingness to share reflections on their own experience in the context of the issues being tackled through research.
The impact is evident in the positive feedback we get from our research magazine, confidence that we are communicating about the topics people want to hear about and assurance that we are pitching our research communications at the right level. 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. This way of working brings new ideas, creativity and motivation leading to better and more meaningful engagement.
The feedback we get from our Content Advisory Group is so, so valuable. They challenge us on a lot of things such as the use of language that we might just take for granted; for example, the use of the word “affected” – as in, ‘people affected by the condition’ – or talking about a “faulty” gene or a “mistake” in a gene.
And what do people with lived experience get from this involvement, do you think?
I’ve often heard that patients feel like they can give something back by getting involved. Some have said that they find it interesting, and that they enjoy learning through the role.
I have heard people say that being involved in some of our projects is helpful for them to hear about research or topics that they may not have come across by themselves. Being involved gives them a change for their voice to be heard and a purpose to help make a difference. Working on co-produced projects means the ownership is shared and the sense of achievement when a project is completed is something we are all united in.
I think the Group values the opportunity to feed into things that are important to them, and to make sure that our community is getting what they need from us, and that we communicate in a way that’s meaningful to them. And I think the Group members value being creative, and getting to know each other in the Group as well. In the past when we’ve had a face-to-face meeting, there’s been lots of time spent together in the pub afterwards! They’re a really engaged and really committed group of people.
Do you have any tips for charities who want to involve people with lived experience in their comms?
Have a think about the role profile and process for involvement so you’re setting out clear expectations for participants. Leave plenty of time to build the consultation with patients into your project timelines, particularly if you’re asking them to input into lots of content. Think hard about the questions you ask about each piece of content – 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. Start thinking about how you can reach out to patients that are not warm to your organisation – this can represent the mix of patients who may come across your communications.
Take time to plan how you will go about meaningfully involving people with lived experience in your work. Think about how you can get a diverse group of people to represent the community that you work with. Involving people in shaping a communications project takes extra time but is well worth it!
Think about what you would hope the group would achieve – be clear about that, right from the start.
One of the things I’ve learned is that the group really, really likes feedback. It can be so easy to get the feedback from them, build it into our communications or our content or whatever it is that we’re working on and then move on. It’s always important to complete that loop by going back to the Group to say, “This is the difference that your work has made. This is how you’ve helped shape this new series of seminars. This is how we’ve taken on what you’ve said.”
For each project, I’ll work with the internal team managing the project, and I’ll get from them a couple of clear specific questions for the group, rather than leaving it vague or woolly.
We’ve really made a commitment internally to consulting the Content Advisory Group on relevant projects – we’ve actually built a reminder into our briefing for our marketing and comms team, which helps us keep the needs of people with muscle wasting conditions front and centre.
Do you collaborate with people with lived experience in developing your comms? I’d love to hear your experience – get in touch, either by email, tweet me @DrRichardBerks or connect with me on LinkedIn.
Thanks so much to Georgina, Katherine, and Ruth for their time and valuable insight into the work happening at their respective charities.