Most clinical research is funded by industry, which sets its own agenda for research and development. Health research is also supported by public funds and by charities.
A formal process for setting priorities for NHS research began in 1991. All NHS research programmes engaged clinicians, patients and carers in deciding research priorities. Within 10 years, many of them had engaged patients. There is also growing enthusiasm for involving patients in research programmes funded by charities.
A survey of public and charitable funders of clinical research provides a picture of current approaches to priority setting in the UK. This found that funders commonly set priorities by “consulting patients and researchers and/or other stakeholders through surveys, focus groups or meetings; relying on informal communication with patients/members, or asking a group of experts (eg a Board or Scientific Committee) to make recommendations”.
Some funders have found researchers resistant to formal strategy development or priority setting. Some have tried working with patients to do so, and have found it challenging. Understanding and summarising patients’ responses has been difficult. There is also a risk of raising unrealistic expectations.