UK-wide respiratory Patient and Public Involvement network
Leading Best Practice for Patient and Public Involvement in respiratory research
At the centre of everything we do
Having lived experience of the disease gives people with asthma and their families a deep understanding and insights that no amount of study can give a researcher or healthcare professional. This is why we include people with asthma in every part of the Centre: from inputting their feedback and direction into individual studies, reviewing PhD and funding applications, attending Centre meetings and events, suggesting new areas of research, to being part of our governance structures and having a say in the overall direction of the Centre itself.
Our network of Patient and Public Involvement volunteers includes people from across the UK. Read two examples of how being part of the Centre has impacted these two volunteers’ lives:
Bill Day | Volunteer Patient and Public Involvement Lead
In 2022, Bill Day reflected on two years as a Volunteer Patient and Public Involvement Lead for the Centre. Read his story.
Two years as a Volunteer Patient and Public Involvement Patient Lead | Bill Day
Noelle Morgan | Patient and Public Involvement member
Noelle Morgan described her experience of the touchpoints along a PhD student’s journey. Read her blog.
'Test bed' site for UK Standards of Public Involvement
In 2018, a new set of national standards for public involvement in research in the UK were launched, with the Centre being selected as a ‘test bed’ site to apply these standards to our working environment throughout 2018 and 2019. The initiative was designed to provide feedback and suggestions for improvements to the standards.
A handbook gives an insight into the learnings gained from the test bed sites, and the impact their input had in shaping the final version of standards released in November 2019. The Centre features in the booklet under two of the six standards.
The handbook features stories from research across the UK and can be found on the NIHR website. The contributions from the Asthma UK Centre for Applied Research can be found on pages 32 -35.
UK Standards for Public Involvement: Implementation Stories
Guidance on funded Patient and Public Involvement staff
The Centre Patient and Public Involvement team published an article about the importance of funding staff for these activities. It gave the first published guidance on how to adequately fund patient and public involvement staff for research projects of varying size.
Find out more about the Patient and Public Involvement platform in the Centre