Medical research charities want to say: ‘we made this medical advance possible’. But the researchers who did the work may feel uneasy about making such a claim. In this blog, we’ll look at ways to resolve this conflict.
I’m incredibly grateful for the contributions of two experts in public engagement and science communication, who know first-hand the challenges faced by medical charities:
- Dr Kat Arney is science writer, author, and founder and creative director of First Create The Media, and previously worked at Cancer Research UK.
- Dr Emily Burns is the Director of the Centre for Public Engagement at Queen Mary University of London, and previously worked at Diabetes UK and MS Society.
The charity perspective
Charities argue that to raise money (and thank donors), they need to demonstrate the impact that these donations have. For charities which fund medical research, this means showing the difference made by the research they have funded.
The thinking goes that supporters and patients only care about ‘tangible benefits’ of medical research. Advances like new drugs, or new tests, that lead to outcomes like improved survival or better quality of life. But for many medical research charities, the early-stage research they fund is a long way from patient benefit. Charities would like to ‘connect the dots’ between that early-stage research and those tangible benefits.
But how an early discovery in a lab becomes a new treatment for patients is complex. The process of medical research is a mystery to most people. Charity communicators ideally want to turn the impact the charity has into a message that’s short, clear, and memorable. And leave little room for nuance. One way to expand on concise messages is through compelling stories, but these often focus on one ‘hero’ of the story and follow their individual struggle or journey.
The researcher’s perspective
But research doesn’t work like this. It is incredibly rare for one person to be solely responsible for a medical advance.
“Yes, one person might have the idea or the vision,” says Kat, “but it takes a team of colleagues and collaborators to turn that vision into a reality.”
This is why many people object to the idea of Nobel Prizes in science, which appear to take the glory earnt by a research team over many years, and hand it over to one or two or three people.
There’s also nervousness around the impact of ‘claiming ownership’ on professional relationships with other researchers. Certain fields of research can be quite close-knit, where everyone knows each other and what they’re up to. A researcher claim that they discovered such-and-such might raise eyebrows among their peers. And it’s these peers who may be reviewing their research papers, sitting on funding committees, or deciding who’s going to present at the next big conference. Understandably, scientists might be nervous about sticking their neck out, and claiming ownership of a significant advance – or a charity claiming this on their behalf.
So how can we resolve this conflict, or find a way around it? Here are some of my thoughts and those of Kat and Emily.
Have open and honest conversations
When charities are working out how they can communicate the impact of their research, it’s absolutely crucial to discuss this directly with the researchers involved. The scientists are in the best place to know the contribution their work has made. And they can help put that work into context, of the wider field and specific discoveries. Charities should approach these conversations with honesty and openness. Explain exactly what it is you’re trying to achieve and making sure you listen to any concerns or objections from the researchers.
It might involve a bit of a negotiation to find a middle ground. And yes, it might end with you acknowledging your charity didn’t do everything. But you can still get across what you did achieve.
Emily explains: “You might have to frame the story differently, introduce quotes to allow for wider acknowledgements or bring in different elements of the story through different channels. Your impact report might focus on one researcher, but further blog posts, or magazine features or Twitter threads could go into more detail.”
These kinds of conversations are another reason why you should invest time in nurturing good relationships with the researchers your charity funds. Good working relationships mean that the charity understands the researcher’s work better, both regarding specific projects and the wider ‘ecosystem’ of their field and funding. Scientists also learn about the charity’s work, and hopefully, get a better understanding exactly what it is you need from them. Good relationships mean better conversations. More efficient, honest, and productive, without having to explain yourself afresh each time.
Do the digging
If your charity is ‘claiming ownership’ over a particular advance, it’s really important to know exactly why. What is it that your charity made happened, that you think means you can say ‘We discovered [blank]’? With high staff turnover, a lot of folklore gets passed around within charities that might not stand up to scrutiny.
It can take a lot of digging to make sure your charity’s big claim to fame is fact and not fiction.
“Sometimes it can be a real historical piece of work,” Kat says, “delving into old year-books, calling up retired professors, and going through old papers, not just the abstracts.”
It’s important to understand what it is your charity was responsible for, so you have all the evidence to hand. The researchers involved (or others who are familiar with their work) might be able to point you in the right direction.
Define the language you use
Certain terms are sometimes referred to as ‘weasel words’, to reflect their vague nature which makes people feel like you’re not telling the whole truth. Examples:
- “we helped discover…”
- “we contributed to…”
- “Dr Bloggs paved the way for…”
- “we supported efforts to…”
You might feel it’s unfair to call these ‘weasel words’. But it’s exactly the kind of language that people can use when they (a) want to be deliberately vague, or (b) don’t know enough so need to be deliberately vague. Neither of those is the impression you want to give your charity’s supporters.
You don’t need to stop using phrases like this, but instead, define how you use these terms in your charity. At her time at Cancer Research UK, Kat Arney and her colleagues made sure that whenever they used ‘weasel words’, they were defined, used consistently, and that they could back them up.
Kat thinks of it like a pyramid of information: “At the top of it is a sentence, like ‘we helped discovered X’, then below that is a few sentences which explain it, and below that, more detail. It means that if someone were to ask you ‘hang on, what does that mean?’, you can always back it up”.
It also helps with the conversations with researchers. “We helped Dr Bloggs to discover…” might sound a bit wishy-washy or over-the-top to Dr Bloggs. But if you’re able to back it up and explain what that means, it could put their mind at ease.
Think of the bigger picture
Should charities funding medical research be thinking of other ways to communicate the impact of their work, aside from medical advances?
I’ve talked before about the challenges of communicating early-stage research. One possibility is to spend less time trying to stick a flag into specific advances, and more time talking about the role your charity plays. Or to put it another way, think about communicating the research funding your charity provides as an essential service, as well as the successes of individual projects.
Going back to the ecosystem analogy, it’s pretty much impossible to point to any one individual organism and explain its ‘impact’ on the wider ecosystem, in any meaningful way. But talking about a species or group of organisms is easier to explain.
So, what role does your charity fulfil in the wider research ecosystem? If your charity didn’t exist, what would be the impact? Investing the time finding the answers to these bigger picture questions, rather than chasing after individual discoveries, could be more productive in the long-run.
Charities could also challenge the assumptions they have about what their supporters want to hear. Emily says “when I spoke to people with diabetes, or MS, or cancer, they want to know if charities worked together. They want to know that their donation is being used efficiently, in collaboration with other charities out there. And I think that message of sharing collective impact is far more powerful than owning it.”
Charities have a unique role in research funding and policy environments. Funding and lobbying at the highest levels, but also directly funded and accountable to people affected by the cause. We know that researchers work within an ecosystem, not alone. Perhaps charities ought to acknowledge that they themselves work within an ecosystem where they don’t have a monopoly on impact.
I think that “Our charity collaborated with other organisations, keeping patients’ interests at the centre, and together, over many years, we did amazing things” is still a powerful message, don’t you?
A huge thank you again to Kat and Emily for their time and insight.