Handbook highlights Centre’s implementation of the UK Standards for Public Involvement
A handbook has been published documenting how the UK Standards for Public Involvement were implemented and integrated into research and projects in organisations across the UK including the Asthma UK Centre for Applied Research
A new handbook has been published today documenting how the UK Standards for Public Involvement were implemented and integrated into research and projects in organisations across the UK including the Asthma UK Centre for Applied Research.
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.
This new 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 Asthma UK Centre for Applied Research features in the booklet under two of the six standards: Governance and Communications.
Implementing Governance
Implementation of the governance standard came about through focusing on our IMP2ART project, IMPlementing IMProved Asthma self-management as RouTine. The booklet emphasises the inclusion of ten lay members from the Centre network in the project. These members contributed to the strategy and the application of the project. Additionally, a patient lead is a grant holder on the study, who reviewed the grant applications and study plan.
As well as individual projects, public involvement is fundamental in everything the Centre does. The Centre Management Committee includes four patient leads who have input on day to day decisions within the Centre’s work.
Implementing Communications
The standard which brought about the biggest change in the Centre was the communications standard. When the Centre was confirmed as a test bed for the draft standards, an audit of the network activity identified communication as having a poor score.
How researchers approached lay members for help with research projects was examined and found that sometimes it was overly academic. The Patient Advisory Group, the Centre’s network of over 120 people with asthma, and parents and carers of people with asthma, co-produced a new request form and process so lay members could better understand requests and also see feedback from other lay members.
PPI central to everything we do
The Asthma UK Centre for Applied research has always held the principle of having patients and the public at the heart of all our activities. Being a test bed for the UK Standards for Public Involvement has enabled us to refine our practices and helps us understand how we can continue to make sure people affected by asthma stay firmly at our core.
Bill Day, Volunteer Patient and Public Involvement Patient Lead at the Centre commented:
“It was great to be involved with the pilot, the standards will make Patient and Public Involvement in research easier to access for researchers and initially easier to understand for volunteers who can sometimes feel overwhelmed with too much information. To this end, the Asthma UK Centre for Applied Research has worked on the communication standard and this has already made huge differences.”
Tracy Jackson, Patient and Public Involvement Research Fellow at the Centre said:
"The UK Standards for Public Involvement in Research provided a framework and guidelines for undertaking meaningful involvement. The Governance standard involves ensuring we have public involvement in management regulation, leadership and decision making. For example, our four Patient Leads provide are members of the Centre Management Committee, actively contributing to discussions and decisions around way we manage the centre. One of our flagship projects, IMP2ART, has a patient lead as a grant holder for the study and they provided valuable insight when preparing the grant and study protocol, and continue to sit on the project management committee. These meaningful involvements ensure we keep people living with asthma at the heart of our work at the Centre."
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
Patient Advisory Group