A new set of national standards have been launched at the 2018 Patients First conference and the Involving People Network Annual Meeting 2018 that are designed to improve the quality and consistency of public involvement in research across the UK.
Public participation
“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,” said Una Rennard, National Institute for Health Research (NIHR) INVOLVE Advisory Group member. “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 have been developed through a UK-wide partnership over the last 18 months and aim to provide people with clear, concise benchmarks for effective public involvement alongside indicators against which improvement can be monitored.
“We know that the quality of public involvement varies greatly across research projects and organisations,” commented Dr Dan Venables, head of Public Involvement & Engagement, Health and Care Research Wales. “The national standards clearly describe a vision for excellent public involvement that we expect all research to aspire to, whilst also enabling us to identify and celebrate existing good practice.”
The six standards are not designed as rules or to provide fixed ideas about public involvement in research but are a description of what ‘good’ public involvement looks like and should encourage self-reflection and learning.
“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,” stated Simon Denegri, NIHR director of Patients, Carers and The Public. “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.”
With a focus of testing the standards out over the next 12 months, the partnership will collaborate with 10 pilot sites across the UK as they put the standards to proactical use in their own respective working environments.
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.
“Researching and developing new, life-changing medicines is best when done collaboratively. Today’s announcement from the NIHR sets out clear standards for how the pharmaceutical industry should work with patients to develop better vaccines and medicines,” asserted Mike Thompson, chief executive of the Association of the British Pharmaceutical Industry (ABPI). “With 7000 new medicines in development by our members, the future of medicine is exciting. These standards will help ensure patients are at the heart of cutting-edge clinical research for much-needed diseases like cancers, diabetes and Alzheimer’s.”
“We welcome the addition of these standards for public involvement in research. They provide a degree of consistency across different R&D sectors and articulate the responsibilities on all of us to strive towards meeting them. I particularly welcome the fact that they accentuate what good public involvement looks like,” added Aisling Burnand MBE, chief executive, Association of Medical Research Charities. “Until relatively recently, public involvement was still unheard of as a concept in many fields of research. I am proud that AMRC members are now leading the charge in this area. Patients First provides us with an opportunity to become advocates for pioneering partnerships that put patients at the centre of all we do. These standards are a helpful framework allowing us to do that.”