Participating in Research – Patient and Public Involvement (PPI) in practice at Autistica

Last week we heard from Bec Hanley about the many benefits Patient and Public Involvement (PPI) programmes offer for people living with health conditions in helping to shape research and services. In this week’s blog, Bethan Davies, who oversees autism research charity Autistica’s PPI groups, describes what their programme of PPI work looks like in practice.

Making sure that autistic people and their family members are involved in everything we do is crucial at Autistica. In 2018 we set up our ‘Insight Group’ involving 50 autistic adults and their parents or carers, to help feed into our strategy and support the researchers we work with. We wanted to ensure their research was accessible to our target audience and was collecting the right data.

Our Insight Group now consists of over 350 members – a third are autistic adults, a third are parents and carers to autistic people of any age, and a third are both autistic and parents/carers of autistic folk (the overlap is important!). A lot of their work comes from autism researchers across the country, who can apply to work with the Insight Group and get feedback on research ideas, approaches or materials. The group are also crucial to the work we do at Autistica, feeding into our campaigns, fundraising, social media and being a part of our Scientific Review Panel, making sure we are representing our community’s priorities.

I joined the Insight Group last year because I felt incredibly strongly that even though an autistic person may be unable to speak, their voice should not be ignored.
Insight Group member

As a large part of our Insight Group are autistic, it is important that our work is accessible and inclusive. This can vary from having a quiet room available if we are holding an in-person event or workshop, to giving questions or talking points to members in advance so they have time to think about how to share their answers. We make sure there are ways to contribute to discussions non-verbally (post-it notes are our workshop must have) and we have a single staff member as a point of contact across everything we do, making it clearer who to contact if any help or support is needed.

Here l was in the room, not an invisible presence filling in a survey.
Insight Group member

We engage and support our Insight Group with a monthly newsletter, which looks at all we have achieved over the past month and what is coming up, as well as sharing data collected from surveys to let the group know they are not alone in the responses they have given. We also have bi-monthly meetings, giving members a chance to see each other and talk about issues that are important to them. For many, this might be their only chance to chat with other autistic people or other parents or carers of autistic people.

https://epilepsy-institute.org.uk/wp-content/uploads/2021/02/Word-clous.png

Word Cloud of responses to question asking Insight Group members how they currently feel during the first lockdown.

We also have our Autistica Network – a 16,000-person network of autistic adults, parents and carers, professionals and researchers who are all interested in finding out about the latest autism research. We’ve worked with our Autistica Network to identify research priorities which feed into our research strategy and have developed four study groups consisting of researchers, professionals, and community members working together to advance autism research in key areas. Researchers can apply to have their studies shared with the network as a recruitment tool, and we hold a range of events and podcasts to share their research in an accessible way – incorporating autistic voices to show the human side of the research and using lived experience as a valuable learning tool for our audiences.

-Bethan Davies