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Research design

Standards to improve public involvement in health research published

It is hoped that the standards will be adopted as an “essential tool” in guiding public involvement in healthcare research.

National standards for public involvement in research were launched by the National Institute for Health Research (NIHR) at the 2018 ‘Patients First’ conference, held in London on 20 March 2018.

The six standards set out what good public involvement looks like, covering inclusive opportunities, working together, support and learning, communications, impact, and governance. They also set out methods for measuring improvement.

The standards were developed over the past 18 months by a UK-wide partnership involving members of the public with representatives from the NIHR, the Chief Scientist Office in Scotland, Health and Care Research Wales, and the Public Health Agency in Northern Ireland. 

Una Rennard, advisory group member of NIHR Involve, which supports active public involvement in NHS and public health research, 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.”

Dan Venables, head of public involvement and engagement at Health and Care Research Wales, added: “We know that the quality of public involvement varies greatly across research projects and organisations. 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 standards will now be tested in ten pilot sites across the UK over the coming year to make sure that they work in practice. The partnership is also encouraging as many groups and organisations as possible to use the standards and to share their learning and experiences.

Simon Denegri, NIHR director of patients, carers and the public, said: “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.

The Patients First conference was hosted jointly by the Association of the British Pharmaceutical Industry and the Association of Medical Research Charities.

Citation: The Pharmaceutical Journal DOI: 10.1211/PJ.2018.20204574

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