Wed 05 Mar 2025

Getting the most out of lived experience: Advice on patient involvement

Our All-Wales Cancer Community was launched to help make the voices of people affected by cancer in Wales heard by those who make policy decisions, deliver services, and design and conduct cancer research.

Each of these areas can be enriched through engagement with people who have lived experience of cancer. The people who have sat in the oncology departments, heard the words no-one ever wants to hear, or walked alongside loved ones with a cancer diagnosis.

Researchers, policy makers, and health care professionals reach out to our team when they have projects that they think would benefit from involving these voices. We share these opportunities on our website, our social media channels, and through regular bulletins to our members. You can sign up here to receive these and find out more about what it’s like to be a member of the All-Wales Cancer Community.

Mal is a valued member of the All-Wales Cancer Community and has been involved in the Community since it started. He has experienced first-hand the huge impact that his involvement can have:

I know how big an impact our presence made on that day, because of the amount people who were coming up to us and thanking us for being there, because we were the ones that were putting our emotions on view to be seen and to be heard, to give them an understanding of what all the talk is about, because we are not words on a page but people with real emotions saying why we got involved."

However, on occasion, he has felt like he is not qualified enough to fulfil the requirements that researchers want from members of the public who want to get involved. He said:

Too often the research project is headlined to appeal to a wider audience. You are drawn into believing that you can be a part of this research project, because you have been through this, but soon as you show an interest then the questions are asked and the doubts start to appear: ‘do you have this qualification?’, ‘have you been involved with this branch of the health service?’, ‘could you run a study group or read research projects and give recommendations?’, ‘do you have clinical knowledge?’

Suddenly something you thought you could get involved with has turned into something you believe only people with a vast knowledge and experience of the subject can be involved with. All you wanted to do was to help to share your experiences of the various cancer treatments you’ve gone through and how it has affected you and your family and the people around you, the things you want to talk about, the things you want to make a difference to someone else going through the same thing."

Mal wanted to share his thoughts to help researchers understand the impact poorly communicated public involvement can have on applicants. He said:

Sometimes it can make you feel less important; just another cancer patient, and you might have so much to say, the things that researchers and study groups need to hear. The public are there, they just need to be encouraged and not frightened to get involved, but because they can’t spell or they might not understand a certain phrase or word, it all may be a bit too complicated for them. Just seeing the word research can frighten people into believing you have to be academically minded.

Following this recent feedback and advice we have learnt some important lessons about what we share with our community, and how. It’s also encouraged us to reflect on how we communicate with people who want to share opportunities with you. Moving forward, we will be taking extra care that opportunities we share are inclusive, and any eligibility criteria is crystal clear. Echoing existing guidance like the Standards for Public Involvement available here, we’ve pulled together these tips for anyone looking to engage the public in their work:

Diversify who you work with, give everyone a chance. Unless you give different people the opportunity to be a part of these groups and research projects, you will limit the people you attract and the insight you gain. to your opportunities.
If someone is not right for your project, take the time to speak to them and explain why they haven’t been selected on this occasion. You are asking people to talk about their lived experiences at sometimes really difficult times in their lives. People are willing to share, but sometimes you can make them feel like they are not experienced enough or not qualified enough.
Do not ask too much of members of the public who want to get involved. Their lived experience is what is of most value to you through patient and public involvement, so think about how that contribution can make your work better, no matter how small. If specific training or experience, beyond having lived with a certain condition, is needed, please make these requirements really clear, and think about what you will gain or lose by only selecting from those who have these credentials

To close with some more of Mal’s own words:

Lived experience, insight, fear, doubt, uncertainty, pain, love, lost, alone, share. Just words on a page. When spoken they come alive. People need your help to do this together, then everyone wins."

Want to find out more about the All-Wales Cancer Community?

Click here

You might like

News

Thu 20 Feb 2025

Cancer waiting times stagnant for another year

News

Wed 15 Jan 2025

Most people diagnosed with a less survivable cancer will die within one year

News

Tue 14 Jan 2025

In response to Audit Wales’ report on cancer services in Wales

If you or someone you love has been affected by cancer, our free Support Line is there for you. Just call 0808 808 1010