Public involvement and engagement in the COVID-19 crisis

As health inequalities are starkly revealed, how do we ensure that under-represented groups and communities have a voice in research? This is particularly important in Greater Manchester where, for some time, we have been working to reduce health inequalities in clinical and translational research.

Bringing people and health research together for the benefit of everyone

In recognition of the vital importance of patient and public involvement, engagement and participation (PIE) in research, the NIHR has developed eight principles outlining shared commitments to PIE during the COVID-19 pandemic. Aligned to the UK Standards for Public Involvement, which NIHR Manchester BRC and CRF were a testbed for back in 2018, the principles emphasise inclusive opportunities, communication, impact, governance and the value of working together.

In this blog I share how we are embedding these principles, adapting our ways of working and continuing to bring patients, the public and researchers together to respond to COVID-19, ensuring that communities continue to have a voice in health research.

What does this mean for the way we involve people in health research at NIHR Manchester BRC?

The Public Programmes Team supports Manchester BRC researchers to involve and engage people in health research. This hasn’t changed. While many non-COVID-19 studies are on hold temporarily, we’re working with COVID-19 researchers who still need input from people to develop research ideas. Along with the rest of the PIE community, we’re adapting our ways of working and thinking creatively about how to innovate our methods of engagement to continue to bring people and health research together.

Keeping informed of COVID-19 research

The NIHR’s shared commitments highlight the importance of staying up-to-date with the latest COVID-19 research developments. We’re part of national networks to share information and learning as well as working closely with Greater Manchester’s research and communication teams at the forefront of the crisis. Our team contributes to the Manchester Rapid Response Research Group, bringing a PIE perspective to a multidisciplinary approach to reducing the impact of the pandemic and minimising lives lost.

Staying in touch with our public contributors is also crucial at this time. Keeping patients and the public engaged with research, especially for those involved in projects which may now be on hold, is key to our relationships. We are building in time to check in with the emotional wellbeing of the people we work with, many of whom are facing big health challenges and are feeling the impact of isolation more than others

Adapting our ways of working

Another issue highlighted in the NIHR’s shared commitments is the shift to an online space. While digital platforms such as Zoom have enabled many people across the world to keep in touch with each other in new ways, for PIE purposes we are thinking carefully about people’s needs, accessibility issues, safeguarding and inequalities. People need to feel safe online and we should offer different ways for people to engage with health research if they can’t access technology. Adapting to change and innovating in ways that ensures equal access, opens up new possibilities for PIE in the future.

Continuing to make opportunities inclusive

A key message of NIHR’s shared commitments is that we will adapt to be responsive to the needs and concerns of individuals, groups and communities.

The Women and Equalities Committee recently launched a Government Inquiry into the impact of COVID-19 on people with protected characteristics. We’ve highlighted this to public contributors we work with, including the Deaf Experts by Experience Group and invited people to respond to a survey, allowing us to collate the findings and submit a broader response.

Influencing the narrative of COVID-19

The research advisory groups we work with enable us to engage with diverse communities and represent seldom-listened to voices in research. These groups are helping to challenge assumptions made in health research and are influencing the narrative of the COVID-19 crisis.

BRAG (BAMER Research Advisory Group) is a group of Black, Asian and Minority Ethnic community leaders who give input and advice on health research and advise our team and health researchers. Currently, BRAG is continuing to meet online, share the impact of COVID-19 on different communities, and work with researchers to draw attention to these. Members are also considering the research questions we should be asking and uncovering ways to make research inclusive.

Voice Up is a young people’s research advisory group, made up of young adults with lived experiences of different health conditions. Young people are another group whose voices are often missing from the broader discussion, and in the current crisis there can sometimes be a gap in how facts are communicated to this information-consuming generation. Now, a collective of young adults, including Voice Up, will be exploring the different ways of understanding a pandemic in the form of a digital comic.

The initiative involves well-known graphic novel artists and is being co-developed with young people and scientific experts from different research disciplines. The first scientist interviewed by young people for the project was Sir Patrick Vallance, Government Chief Scientific Adviser. The purpose of the comic is to inform, connect and empower young adults to make sense of the science and research related to issues faced in pandemics, what they feel, what they should do and how this will impact future research. This project will also enable us to evaluate the effectiveness of this new approach to sharing information about research.

Life after a crisis

While clinical research into COVID-19 is vital, we must also remember the value of involving people in research and the benefits that come from understanding and exploring the public’s experiences, opinions, risk perceptions and behaviours during this pandemic.

The NIHR’s new shared commitments highlight a number of key principles we are embedding in our work. The importance of bringing groups together to share information is crucial. Continuing to involve and empower different voices to be part of the conversation and working together to shape research questions will help us to develop new ways to tackle COVID-19.

We have an opportunity here to learn and adapt in ways that will bring huge advancements and improvements to the world of research and the way we involve people in health research, and may even help us to be more prepared for future pandemics.