NIHR | Manchester Biomedical Research Centre

Manchester BRC and CRF part of national test bed for newly launched national standards to improve public involvement in research

A set of national standards designed to improve the quality and consistency of public involvement in research launch today at the 2018 Patients First conference.

The Public Programmes Team at Manchester University NHS Foundation Trust -who lead the involvement and engagement work for the NIHR Manchester Biomedical Research Centre and Clinical Research Facility – has been selected as one of ten organisations in the UK to become a test-bed for this work.

The standards aim to provide people with clear, concise benchmarks for effective public involvement alongside indicators against which improvement can be monitored. They are intended to encourage approaches and behaviours that will support this.

Una Rennard, NIHR INVOLVE Advisory Group member said: “Patients and the public bring a unique perspective to research, improving accessibility, quality and relevance by, for example, helping to ensure the language and content of study information is appropriate. As a public contributor I want to ensure proposed research is asking questions that are important to patients and is acceptable to potential participants.”

Members of the Public Programmes Team

Members of the Public Programmes Team

We are delighted to have been selected as part of this national network of test-bed organisations. It’s important to us that we work with a broad range of people, patients and researchers to appraise the standards from a variety of perspectives and experiences.

Leah Holmes and Bella Starling, Co–Directors of the Public Programmes Team

The standards have been developed through a UK-wide partnership over the last 18 months building on previous work in this area. The partnership brings together members of the public with representatives from the National Institute for Health Research (England), the Chief Scientist Office (Scotland), Health and Care Research Wales and the Public Health Agency (Northern Ireland), working with an independent expert. The partnership will be working with ten pilot sites across the UK, including Manchester, as they put the standards to practical use in their own working environment

The six standards are a description of what good public involvement looks like, designed to encourage self-reflection and learning. They are not designed as rules, or to provide fixed ideas about public involvement in research.

I am absolutely delighted to see the Public Involvement Standards reach the next milestone in their development at the Patients First conference today. My congratulations and thanks to those organisations who will be 'test beds' for the standards over the next 12 months. They will be playing a really important role in making them roadworthy for future users. In the future, we want the standards to be seen by groups and organisations large and small; public, private and charitable as an essential tool in guiding their public involvement. I firmly believe the pioneering partnership that has been at the heart of these standards all along can only strengthen their case in this regard.

Simon Denegri, NIHR Director of Patients, Carers and The Public

The focus is on testing these standards in the coming year. The partnership will be working with ten pilot sites across the UK as they put the standards to practical use in their own working environment. These sites will be based at the Asthma UK Centre for Applied Research, Sheffield Teaching Hospitals NHS Foundation Trust, Keele University, the Kidney Patient Involvement Network, Queen’s University Belfast, the University of Glasgow, the Royal College of Obstetricians and Gynaecologists Women’s Network, the Royal College of Speech and Language Therapists, Manchester University NHS Foundation Trust and the Wales School for Social Care Research and CADR (The Centre for Ageing and Dementia Research).

The Public Programmes Team at Manchester University NHS Foundation Trust, will be leading the test bed work in Manchester across NIHR Manchester BRC and CRF.  Their work supports researchers and public contributors with varying levels of experience and expertise in PPIE, providing a unique opportunity to test out PPI Standards across a large research patch and in differing PPIE contexts.

The test bed will integrate the PPI Standards into the team’s existing work and strategic priorities for the Manchester BRC and CRF. The team will also focus on the following questions:

  • How does this standard help us to understand, examine and appraise progress in our PPIE work?
  • How might the standard be improved?
  • What did we find out about our work from using the standard?
  • What utility does a standard have across a range of backgrounds, skills and experience?

The success criteria will reflect different PPIE contexts: First Steps, Everyday Practice and Aiming High.

Beyond the testbed sites, the partnership is encouraging as many groups and organisations as possible to use the standards in their workplace and share learning and experiences. With over 50 organisations applying to be pilot sites it is clear that, across the entire UK health research system, there is now a real commitment to involve patients, carers and the public so that research is done with their interests and priorities in mind.

The launch of these UK-wide standards, aimed at teams looking to involve people in research, should mean more research benefits from valuable public insight. For more information, or to sign up to test the standards, visit the standards website.