A set of national standards designed to improve the quality and consistency of public involvement in research will be launched at the 2018 Patients First conference and at the Involving People Network Annual Meeting 2018.
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 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.
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.
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.”
Mike Thompson, chief executive of the Association of the British Pharmaceutical Industry (ABPI) said:
“Researching and developing new, life-changing medicines is best when done collaboratively. 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.”