As someone with cystic fibrosis or as a carer or healthcare specialist, you know what you or those you care for need for a long, healthy and happy life. But how often do you get to tell that to a scientist working to achieve that future for you?
In order for research to make a real practical and lasting difference, we need to consult those who know best – those experiencing the condition every day. It may come as a surprise, but this is quite a unique approach in medical research, and one that Autistica and charities like the Cystic Fibrosis Trust are leading the field in. Most research is decided upon by scientists, and ultimately that comes down to what funders want to fund. We know these two groups have distinctly different ideas of what research should looks like, and that’s why at Autistica we decided to embark upon a James Lind Alliance Priority Setting Partnership (PSP) to bridge the gap.
Everyone’s opinion matters
When we sent out our survey to kickstart the PSP process, we asked people to give their top three questions for autism research to answer. Survey responses were monitored to ensure that we had a good geographical spread, a representative ethnic and gender mix, as well as a balanced number of autistic individuals, professionals and carers. Views on autism research are wide ranging. Some may want treatments whilst others may want research to address society’s attitudes. These are all valid opinions and the Priority Setting Partnership process makes sure that no one viewpoint dominates. We considered every question submitted equally, whether it was submitted by 1 person, or 200.
The next stages narrowed the long list of questions down and included a further survey. The final stage brought a diverse group of people together for a workshop to decide on the top 10 questions. To come to a happy consensus was a great achievement for all involved.
"Parents, autistic adults and professionals deciding on the Top 10 questions at the final Autistica PSP workshop." The next stages narrowed the long list of questions down and included a further survey. The final stage brought a diverse group of people together for a workshop to decide on the top 10 questions. To come to a happy consensus was a great achievement for all involved.
Raising the profile of research
By working with partner service charities, whose supporter base may not have considered research before, the PSP survey allowed us to get new people thinking about science. We received over 3,000 questions in the survey. As a knock-on effect, we saw an increase in research volunteers, which should improve their outcomes and allow for higher quality trials in the future.
Increasing research funding
We know from past PSPs in other conditions that the process increases research spend in the areas identified as being top priorities. The JLA works in partnership with the National Institute for Health Research and is respected by major health research funders such as the Medical Research Council and charitable trusts and foundations, so the results can strengthen any funding requests. When we announce the top 10 questions we will setup meetings with funders to request that they fund the questions identified, and we too will re-shape our research strategy.
The feedback we have had from all of the individuals, families and professionals involved in the autism PSP has been so positive, and we will continue to work in this community-led way far into the future. I urge you to do what you can to get involved with the Cystic Fibrosis PSP and stake your claim in the future of cystic fibrosis research.
Share the survey with your networks and make sure every voice is heard. After all, you are the experts.
Rebecca Sterry is Communications Manager at Autistica, a national charity that campaigns for autism research which will lead to longer, happier, healthier lives for people affected by autism. Follow Rebecca @bex_sterry and Autistica @AutisticaUK on Twitter.
Rebecca Sterry, Communications Manager at Autistica
Right: Parents, autistic adults and professionals deciding on the Top 10 questions at the final PSP workshop.