How working with public can help get your research funded
Patients have a better understanding of what they need to improve their lives than medics, because they’re living them. That's the 'what'...
Knowing how to make the improvements is our job.
(TLDR and actionable bullets at the end of the post, as always)
Grants teams - the people who help researchers put together the huge applications documents to get research approved and funded - tell me about half of the rejected applications because they of poor public engagement plans.
Funders and sponsors are demanding better plans, but researchers are often literally cutting and pasting from old applications. They see it as a box ticking exercise, but it isn’t and it doesn’t work.
So what do these people want?
They want to be able to defend their decision to fund you or sign off on your study by demonstrating there’s a public interest. Being able to say ‘the researcher has talked to the relevant population and they want it’ is a very persuasive way of doing that.
(They don’t put it like that, but it’s there. It’s also arguably better science, but that’s not what this post is about.)
It’s not science, it’s political, and that can be annoying, but if you want the funding, that’s the game.
In the UK, the ultimate authority is the Health Research Authority. They say:
“Working with members of the public means researchers need to be clearer about why they want to conduct their research and how it is relevant to the public (Staley 2016; Boers et al 2015). It may challenge researchers’ aims and assumptions.”
A lot of the UK public sector funding is siphoned through the National Institute for Health and Care Research (who are sticking with NIHR on their branding, as a hang over from their previous title without the ‘care’ bit). This what they say:
“Unless otherwise directed by the relevant funding opportunity, you will be expected to demonstrate appropriate and proportionate plans and budget to deliver this partnership working”
The Canadian equivalent, the CIHR, says:
“..citizen engagement (CE) as playing a key role in achieving the [Knowledge Translation] imperative of CIHR's mandate and... ongoing integration of citizens' input in research priority setting, governance and in funding programs and tools. The Act (Bill c-13) that created CIHR expressly directs the organization to achieve its mandate by encouraging interdisciplinary, integrative health research which includes engaging voluntary organizations, the private sector and others”
In other words, if you want Canadian public money, you need to show citizen engagement. This is the executive summary,and the version for the public , and the handbook for researchers.
In the USA, the NIH has had, up to now, a similar approach, because that’s what the research says leads to good science. We all know about the current shitshow in the USA though, so I’m steering well clear for the moment.
I’ll get into some specific ideas of how they recommend you do that in other posts, or there’s plenty of google-able stuff.
A quick example from my own experience though, the RAPID trial, which asked eczema patients what they would like studied about eczema. The National Eczema Society has its own ideas laid out by a professor: biologics, JAK inhibors, tyrosine kinase inhibitors, vanilloid blockers.
The patients in the RAPID trial had ideas too, and the leading one was:
‘How many times a week should I shower?’. The question came up because, on the one had, they wanted to stay clean and dirt doesn’t help dermatological conditions. On the other hand, washing too much will dry out your skin, which also doesn’t help dermatological conditions either. So they wanted an evidenced based number.
It got NIHR funding.
So what can you do about it?
Start from first principles, don’t just cut and paste from someone else’s application, even if it worked. Your research is different, and you can do a better job. Funders and sponsors are more demanding than they used to be.
Define your public - it’s not ‘everybody’. Patients? Relatives of patients? A specific group of your peers?
Pin down what you want the outcome from your engagement with them to be - EG ‘to find out A or B’ rather than ‘to prejudge their input so I can investigate B’. The panels are good at spotting that stuff, as they’ve generally tried it themselves at some point.
Come up with three ways of reaching them. Public meetings or social media might do the job, but they’re probably not enough. What are the existing channels, like patient groups, that you could contact, for example?
I’ll be returning to each of these in the future, but those are the starting points.