Involving people with lived experience of multiple long-term health conditions to inform the development of collaborative research using Fora Health

We asked for feedback from people with lived experience of long-term conditions and their carers on what language to use in our public-facing writing so it’s understandable to everyone. Abbreviations should be listed upfront, in a key, to familiarize readers. It’s helpful to be specific about the specialisms of healthcare professionals, instead of using broad terms.

We also got feedback on how to improve the way we co-design programmes with clinicians and people with lived experience of long-term conditions and their carers. Research projects should also involve carers’ perspectives so research can positively impact the experience of people who need carer-support. Shared decision making programs could help communicate to clinicians priorities that matter most to people who live with long-term conditions.