New standards for public involvement in research launched across the UK
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:
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 behaviors 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.
Dr Dan Venables, Head of Public Involvement & Engagement, Health and Care Research Wales said:
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.
Simon Denegri, NIHR Director of Patients, Carers and The Public said:
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 Aging and Dementia Research).
Beyond this the partnership is encouraging as many groups and organizations as possible to use the standards in their workplace and share learning and experiences. With over 50 organizations 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.
Mike Thompson, chief executive of the Association of the British Pharmaceutical Industry (ABPI) said:
Aisling Burnand MBE, Chief Executive, Association of Medical Research Charities said:
Excellent examples of teams involving people in research already exist. In a recent NIHR-funded feasibility study to help patients manage their epilepsy, involving a group of people with learning disabilities was key to success.
Epilepsy is hard to control with drugs and 60-70% of people with learning disabilities will continue to have seizures despite medication. With very few alternatives available, Books Beyond Words - which provides books, services and training for people who find pictures easier to understand than words - became the focus of a Hertfordshire Partnership University NHS Foundation Trust study, as the team set out to evaluate the resources for people with epilepsy.
The team involved the public and patients from the beginning, at which point they presented to groups and gathered input into the study design. This process led to a number of changes in the initial plans and this was just the start. During the study, the team really began to reap the rewards of involving patients and the public in their project. They found patients and the public added a pragmatic element that enabled the team to make changes throughout the study.
Dr Silvana Mengoni, researcher on the study said:
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.
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