Patient and public involvement during and beyond COVID-19

A new report about the impact of the COVID-19 pandemic on patient and public involvement and engagement in biomedical and health research is being published today.

It highlights a potential decline in public and patient involvement in research during the pandemic. The report outlines the need for concerted action to reverse this trend to harness the power of patient and public involvement in improving research and ensuring that its results are trusted and effective.

The report summarises discussions from a FORUM workshop held in May 2020 and run jointly by the Academy of Medical Sciences (AMS), the Association of the British Pharmaceutical Industry (ABPI), the Association of Medical Research Charities (AMRC) and the National Institute for Health Research (NIHR) in May 2020.

Workshop discussions recognised that the COVID-19 pandemic has been an unprecedented challenge for society, including for biomedical research. In response, biomedical researchers and organisations have had to quickly adapt to help tackle COVID-19 and its wider effects.

In the UK, 62 nationally prioritised Urgent Public Health studies have been successfully set up, recruiting over 200,000 participants in just six months – a response internationally hailed as a success. The RECOVERY trial, now expanded into a Phase II/III trial to as RECOVERY+, has been a world leader in proving which treatments are effective against COVID-19.

Pulling back the curtain, however, reveals a lost opportunity.

The report summarises some of the challenges to patient and public involvement during the pandemic. In April 2020, the Health Research Authority (HRA) became aware that patient and public involvement in new clinical trial applications had dropped significantly. Only 20% of the applications for COVID-19 research received in March 2020 said they would be involving patients, carers, service users or other members of the public in their research, compared with 78% of applications in 2019.

This is in contrast to the situation prior to the COVID-19 pandemic, when there was growing momentum around public involvement, with agreement across the sector that this needed to be embedded system-wide across health research and with progress being made nationally and internationally to develop tools to support this, such as the UK Standards for Public Involvement and PARADIGM.

So how can the drop in patient and public involvement in research be rectified?

The workshop brought together thought-leaders from across the sector, including patient and public contributors, to tackle this question.

There was widespread concern that the pandemic and its effects had had a major impact on public involvement across the research agenda – with a worrying decrease in public involvement observed in some forms of research, such as clinical trials – and that previous achievements in this field would not be regained without considerable effort.

To address this, the meeting highlighted the need for leadership and coordination of public involvement and engagement and called upon institutions and funding bodies to redouble their support for researchers, actively encouraging them to involve the public in research whenever possible. Engagement and involvement of communities disproportionately affected by COVID-19 should be a priority, and sharing best practice across the research community will be paramount to ensure that effective new methods continue to be used beyond the pandemic.

Meeting participants noted that public engagement with biomedical research has been high during the pandemic. This offers an opportunity to harness this enthusiasm and involve and engage new groups in biomedical research. Trust in science is more important than ever. Public involvement in and engagement with research were seen at the meeting as a key way to help to ensure the findings of COVID-19 research are communicated in a way that builds public trust. 

How is the community responding to these challenges?

Many organisations have put in place initiatives to ensure that public involvement in research remains central to research and recovery throughout and beyond the pandemic. For example:

The meeting concluded that all parts of the life sciences research sector should work together to enhance the opportunities for patients and the public to be involved and engaged with research. This will include championing the benefits of patient and public involvement in research, finding innovative ways to engage underrepresented groups, and sharing best practice and lessons learnt to improve research and maximise its benefits throughout and beyond the pandemic.

Find out more about our ongoing policy work supporting the UK response to the COVID-19 pandemic on our information hub.

Please visit the Academy’s policy projects pages to find out more about our projects on mental health and neuroscience research priorities, and COVID-19 winter preparedness.

Find out more about Planet Divoc-91, a new comic about COVID-19, here.

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