The NIHR has published a handbook sharing ten case studies from health research organisations who tested and implemented the UK Standards for Public Involvement in their research between 2018 and 2019. The handbook includes the study 'Implementing the New Standards for Public Involvement in Research Environments (INSPIRE) which is part-funded by the SPCR and led by Dr Steven Blackburn at Keele University.
Each case study in the handbook highlights how researchers applied the standards, which standards they focussed on, the impact of the standards on their outcomes, and reflections about public involvement more broadly.
Principal investigator Steven Blackburn said "As researchers, we sometimes lose sight of the reason we do research – to benefit the patient. Involving them brings us back to that. We look forward to seeing how these will improve our current practices and make a difference to future research”.
Contextualising the standards
The PPI standards, launched at the Patients First: Pioneering Partnerships Conference in 2018, were designed to improve the quality and consistency of public involvement in research. In 2013, INVOLVE carried out a review of existing work on principles and standards for Public Involvement (PI) in the NHS, public health and social care research. A series of projects then led to the development of INVOLVE’s Public Involvement in Research Values and Principles Framework.
What are the standards?
- A framework for what good public involvement in research looks like and are adaptable to different situations;
- Designed to encourage reflection and learning, including where lessons have been learned when public involvement has failed to lead to expected outcomes;
- A tool to help people and organisations identify what they are doing well, and what needs improving;
- Intended to be used with any method or approach to public involvement in research.
Keele University’s pilot study was selected to test the Research User Group 'Buddy' role within the School of Community and Social Care Research, to demonstrate best practice, and to improve engagement in healthcare research. It was one of only ten pilot studies chosen to test the standards, from 53 proposals submitted.
The Implementing the New Standards for Public Involvement in Research Environments (INSPIRE) project applied the National Standards, assessed and improved the quality of Public Involvement at the Research Institute for Primary Care and Health Sciences and Keele Clinical Trials Unit.
The study aimed to:
- Implement and test all six National Standards throughout a Research Institute
- Use the Standards as a mechanism for reflecting on current practice
- Assess the impact of implementing the Standards on improving the quality and visibility of public involvment practices
- Ensure successes and learning are shared with regional and national partners throughout the lifecycle of the project and beyond.
Clinical student Dr Hassan Awan talks about getting involved in the Research User Group at Keele University in 'Setting up a culturally sensitive patient advisory group'
In 2015, the NIHR strategic review of Public Involvement included the following recommendation:
“Culture: The NIHR should commission the development of a set of values, principles and standards for public involvement. These must be co-produced with the public and other partners. They should be framed in such a way, and with a clear set of self-assessment criteria, so that organisations across the NIHR see their adoption as integral to their continuous improvement in public involvement.” Going the Extra Mile report
In March 2016, an NIHR workshop brought together a group of PI practitioners and involved public contributors to explore how best take this forward.