Public Involvement Standards

Posted by: Julie Simpson - Posted on:

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 – hosted jointly by the AMRC and the ABPI – and at the Involving People Network Annual Meeting 2018.

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.”

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.

They 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 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.

The focus is now 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).

Beyond this 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 be a freestyler tester of the standards, visit the standards website.