Lived experience research priorities

Scoping survey and workshops to identify topics of urgent interest 2019-2020

Why did we do this research?

The In Your Words research project was carried out in 2019-20 by the McPin Foundation and Words That Carry On.

We wanted to identify the topics most urgently of interest to those affected by a personality disorder diagnosis and in the autistic community, so we asked people from key stakeholder groups to rate nine topics from “vitally important” to “not important”.

The results – summarised below – suggested that we should prioritise research into diagnosis and its implications, particularly the diagnostic processes for autism and personality disorder.

The full report, including a detailed analysis of the responses, is available here.

You can read a blog post from the project here: Spreading the word in 2019