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Involving patients in the design of studies is crucial to COVID-19 research, report shows

Last updated on 13 Jan 2021

Patient involvement in COVID-19 research is crucial, adds value and is not just ‘a nice to have’, according to a new report by the Health Research Authority.

The report by the regulator shows 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.

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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.

Professor Sir Terence Stephenson

‘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’.’

Professor Sir Terence Stephenson, HRA Chair

The report captures views from researchers and public involvement contributors on the impact of the matching service and the involvement that it enabled.

One pharmaceutical trial manager using the service said: ‘We're really happy to use the service because at the end of the day these trials are for the patients, so if they're not reader friendly they're not user friendly, [and] then it does down the line affect our recruitment and retention strategies as well.’

Multiple sclerosis patient and former NHS midwife, nurse and educator Adele Battaglia, from Newport, South Wales, said involving patients added to the credibility of the study and helped to bolster the research.

Adele Battaglia

‘If you want patients or the public to be involved in your study, they need to understand you and not find the information daunting. I’ve been able to help by commenting on the patient documentation and suggesting tweaks to terminology and research jargon.’

Adele Battaglia, patient and public contributor to COVID-19 research

The report calls for strong leadership and collaboration across the whole research system, supported by good communications and information, to ensure that public involvement plays its part in successful research, whatever the circumstances.

Juliet Tizzard

‘The collaborative effort to establish and run the matching service has demonstrated that the system has the capacity to respond appropriately to support the involvement of the public proportionately and effectively regardless of the circumstances.

‘It showed that with effective system-wide collaboration, communication and information, public involvement was able to become ‘business as unusual’. If that can be maintained, then 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.’

Juliet Tizzard, Director of Policy and Partnerships at the HRA
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