As part of this year’s Engage conference, I was invited by those kind folk at NCCPE to share my story of navigating change and embedding public engagement and involvement in health research over the last 10 years. Part of the brief was to bring an object that captures something of that story of change. Here’s my object, story and some of what I said:
Sheep have a special significance for me. My PhD investigated how a sheep virus, from the same family as HIV, causes brain damage. I spent many a happy hour chasing sheep around rolling Scottish mountains. Later, as a science communication student, a marking moment was reading Brian Wynne’s paper on the importance of lay knowledge and living experience in science, based on the experience of Cumbrian sheep farmers during the Chernobyl nuclear crisis. Today, I live amongst those sheep. They are an everyday reminder of why I do what I do.
My mission is, and has been, to knit that lay knowledge into the fabric of health research, into the structures of my organisation, Manchester University NHS Trust.
Patterns and crafting change
A plethora of patterns are available on the knitting market. Jumpers, hats, baby booties, blankets, which to tackle first? Which aspect of change and embedding engagement to knit first?
10 years ago, my post, and my team were unusual. We still are. Through the vision of previous leadership, my post had been created (albeit with soft money) to support public engagement with genetics. We took baby steps: we enabled researchers to engage, we supported people living with genetic conditions to take active role in research, we debated, inclusively, the hot topics of the genetics day. But we were still the add-on: the bobble on the hat.
Time and funding moves on (read: funding comes to an end). We moved away from a narrow focus on genetics, to work across a wider range of health research. The beauty of knitting is that the options, the stitches, the patterns, are limitless. Knit one, purl one. The delicate, sensitive stitches of baby booties; being bold and brave with a statement jumper. Choose a pattern, a public engagement or involvement method, a way of embedding change, from the multitude that are available, to suit your purpose. And get knitting.
Now, we have woven lay knowledge into the Executive and Governance structures of our research organisation, our researchers learn how to work hand in hand with patient partners, our community of patients and people involved in research is celebrated and thriving, we connect with thousands of people and patients everyday through our projects and events, in real life and online. And occasionally in knitting groups.
Do I represent the knitting needle of engagement? I don’t like to think of myself as pointy but… I have had to:
- Acutely navigate the sometimes sharp politics of health in a competitive environment that often questions the value of public involvement and engagement,
- Demonstrate incisive strategic, evaluation and implementation skills.
- Always, always, be clear about the point of engagement and involvement. What are you knitting and what are you hoping to achieve (mine’s currently a jumper)?
- And yes, sometimes, you have to be pointy to pierce the crap and cynicism, and accusations of ‘woolliness’, that are sometimes directed at public engagement and involvement.
It happens, I’ve dropped a few stitches in my time. It’s not the end of the world. We learn and move on. You can still make a wearable jumper with a few dropped stitches.
You may have noticed that my wool is made of strands of different colour. What’s not so visible is that some strands are synthetic, some are wool. Having different strands of wool makes a better jumper.
My mission now, and that of our team is to make engagement and involvement to become more diverse. Health research generally does not reflect our population – be that in the profile of who takes part in clinical trials, or who is engaged or involved in health research, or who becomes a health researcher. We’re developing a range of different approaches across our team and research organisation to support a more inclusive research environment. Knitting with different wools, according to different patterns, some of which may not have been knitted in our organisation before.
“This is bigger than us”, say some colleagues. Perhaps, but that’s not a reason not to try. I might need to get a bit more pointy.
How long is a piece of wool?
18 balls of wool it took me to knit my last jumper. That’s a long piece of wool. Of course, embedding change takes a long time, we know that. I’ve been going 10 years in my current context, and there’s plenty more to do. But I’m always surprised at how people think it can take single ball of wool; I’m always amazed at the length of 18 balls of wool.
Not to mention that balls of wool are not cheap. Embedding engagement effectively, requires resource. Obvs.
“Help us set up a new knitting group”, they said, “we’re just across the road”.
Gladly, I did. The group thrives to this day. Except something unexpected happened. It seems that we’re now in knitting competition. When did “My jumper is better than yours, but I’m not going to share the pattern” happen?
Public engagement, and embedding public engagement is becoming a competitive advantage in health research. This is to be welcomed, in terms of according value and status to our practice. There are more and more ways to share patterns, to evidence the value of engagement and draw on experiences of culture change – today included. But we still need to avoid the pitfalls of siloing practice, of racing to the next trendy pattern to show our knitting brilliance.
My jumper is taking shape. It’s not finished yet. It’s not followed the most straightforward pattern. It’s not perfect. But I’ll be wearing it with pride anyway.