Funders must ensure patient involvement, even in rapid-reaction Covid-19 studies, says HRA
The UK’s health regulator has warned that patient involvement in the design of research studies is not just “a nice to have” but must be “business as usual”, even with fast-moving work on Covid-19.
The Health Research Authority is demanding study sponsors and funders insist on patient involvement in the design of Covid-19 and other health research projects.
“Public involvement is important, expected and possible, even in a public health emergency,” said Terence Stephenson, HRA chair. “When patients and the public are involved in designing research studies, it helps to make research better.”
In a 13 January report, the regulator says that at the start of the pandemic, just 22 per cent of Covid-19 studies had patient input on their design.
The regulator has set up a Covid-19 matching service to link researchers with members of the public who can quickly provide input into study designs before they came to the HRA for approval.
This has helped to boost patient involvement. The HRA says that by August, over 85 per cent of Covid-19 studies were involving patients.
“Public involvement should not be ‘a nice to have’,” Stephenson said. “We are calling for sponsors and funders to do what was achieved by the Covid-19 matching service—showing leadership and making it clear that public involvement is ‘business as usual’.”
Juliet Tizzard, director of policy and partnerships at the HRA, added, “There is no reason why public involvement should not be business as usual for the sponsors and funders of all health and social care research in the UK.”