A GRANDMOTHER-OF-EIGHT, from Belfast, has been helping to launch a new report which shows involving patients in the design of studies is crucial to COVID-19 research.
Dr Jackie Granleese, a mother-of-four and member of Public Involvement Enhancing Research (PIER) NI, joined a number of patients and public contributors to launch a new report by the Health Research Authority working with Health and Social Care Northern Ireland (HSCNI).
The report shows that patient involvement in COVID-19 research is crucial, adds value and is not just ‘a nice to have’. It demonstrates the high value of involving patients in COVID-19 research both in terms of recruiting patients to trials and retaining them, as well as adding value to the topics being investigated.
The HRA is now calling on more sponsors and funders to play their part with clear and consistent leadership and to insist on patient involvement in their COVID-19 and other health and social care research studies.
At the start of the pandemic just 22 per cent of COVID-19 studies had consulted patients in the design of their study.
The HRA worked with partners to rapidly set up a COVID-19 matching service which linked researchers with public contributors who could provide feedback and input into COVID-19 research studies at speed before they came to the HRA for approval. This service along with other interventions has helped to jump-start patient involvement and by August over 85% of COVID-19 studies were involving patients, helping to improve health and social care research.
The new report entitled Public Involvement in a Pandemic: lessons from the UK COVID-19 Public Involvement Matching Service, reflects on how that huge improvement in public involvement was achieved.
‘I think people/patients can bring perspectives with fresh eyes to what is being done. They bring their experiences – particularly if they’ve suffered from what they’re looking at or reading about. I think the systematic involvement of the public is critical in the co-creation of relevant research.
‘The new report is very important in highlighting the benefit of involving patients and members of the public to researchers. I hope in the future more researchers will realise the many benefits of involving patients and members of the public in their research.’
Professor Sir Terence Stephenson, HRA Chair, said: ‘Public involvement is important, expected, and possible, even in a public health emergency. Our report clearly shows that when patients and the public are involved in designing research studies it helps to make research better.
‘Public involvement should not be ‘a nice to have’. 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’.’
Dr Janice Bailie, Assistant Director, HSC R&D Division, Public Health Agency NI, said: ‘HSC R&D Division believes strongly in the value of involving patients and the public as partners at every stage of the research process. This report reinforces that belief and we are delighted that colleagues from our Public Involvement Enhancing Research (PIER) group in Northern Ireland were able to participate in this work.’
To read the full press release click here and to download the report click here.