Creating a culture of public involvement

By Jenny Sharma

What is it like to be diagnosed with cancer? What is the hardest part of living with the condition? If you wanted to take part in research, where would you look and what information would you want to know? We need to routinely ask questions like this so that we can design research that best meets the needs of the cancer community. What we need is a culture of public involvement.

My name is Jenny and I’ve recently started as Public Involvement Manager at the CRUK Scotland Centre. It’s my job to work closely with our researchers to involve people affected by cancer in our research. When I say public involvement, I’m talking about having two-way conversations with people affected by cancer to hear about their experiences of living with the condition and involving them when it comes to all aspects of research. Public involvement focuses on the idea of shared decision making and the recognition that people affected by cancer are experts by experience. They bring a unique insight to cancer that we can’t learn from textbooks, labs, or lectures.

The CRUK Scotland Centre has a five-year public involvement strategy aiming to embed the voices of people affected by cancer throughout our research programme. We want to have members of the cancer community contributing at every level, from the top strategic discussions of the Governance Group all the way through to planning individual research projects or clinical trials. It’s important that we involve people in a way that works best for them so that they are fully empowered to contribute to our research and have a real impact.

Building this culture of public involvement requires some key first steps. To start with, we need to have a good understanding of what public involvement is taking place at the moment and identify what members of the public we’re currently engaging with. I’ll use this information to work out where the gaps in our public involvement are and how we can address them. This could be through training for researchers or reaching out to members of the public to make sure that we’re involving a wide range of voices. Building up a picture of the existing public involvement groups also means that we know where to go when we’re working on new funding applications.

Great public involvement can’t take place unless there’s a resource to fund it though. As a result, I’ll also be supporting researchers to budget for public involvement in new grant applications and I’ll be developing a funding model so that we can run public involvement activities in the pre-award phase of research. Public involvement is required by the majority of funding bodies so it’s important that we can demonstrate that we have both the resource and the skills to do this well.

I’ll also be setting up a Public Involvement Steering Group for the centre to help deliver our public involvement strategy. We’ll have two people affected by cancer sitting on the Steering Group, one as a co-chair, to make sure that their voices are central to the discussions. We’ll also have colleagues from the Glasgow and Edinburgh CRUK Centres, the Edinburgh Cancer Research Centre, the IGC, Glasgow School of Cancer Science and the Beatson West of Scotland Cancer Centre, as well as postdoctoral and PhD Students.

Creating a culture of public involvement means making sure that everybody has a voice at the table, and these are some of the early steps that I’ll be taking to push forward our public involvement strategy at the CRUK Scotland Centre over the next year.

If you have any examples of public involvement that you’d like to share, or any ideas that you’d like to discuss, then please do get in touch.