COVID-19 matching service is already improving research

‘From the discussions with the researchers, it was clear to me that they were looking for a ‘fresh pair of eyes’ on their documentation. They wanted to make sure that they made sense and that the language and style were clear. The researchers also wanted the contributors to highlight any areas that might prevent them from participating, or identify areas where the documents could be improved to encourage people to participate.’ 

‘I see COVID-19 as our enemy and if I can be of help, I want to be. This is something that affects all of us. My experience and that of friends being affected, made it very personal.

‘As a patient, I’ve had to read patient information sheets and some haven’t been very good at giving the instructions. I have a long-term health condition which has involved lots of tests and medications so I’m very aware of the importance of being clear and accurate with people.’ 

‘The people recruited were highly relevant, dedicated and motivated. The feedback we received was really valuable and constructive.

‘We got really detailed feedback from individuals…particularly on participant-facing information. The comments on the participant information sheet were really useful – I think we implemented every single suggestion.

‘For example, we’d prepared details of what would happen during the study and mentioned a finger prick sample. The advice our public contributors gave us was that they would feel daunted by the mention of doing this sample themselves – and we realised we didn’t need to ask this straight away. We decided to just recruit the participants first, as well as adding that someone else would be able to take blood if a sample was needed.’

‘We also received detailed feedback on an email to send to potential participants. They told us ‘you should be advocating for this study in a more direct way. Your communications should say it’s important’. They were really motivating comments and it felt like they empowered us to be more assertive.

‘To have people say this is super important, it must happen – this had a really positive emotional impact on me.

‘Feedback also influenced changes in the overall study design, which the research team thinks has had a massive impact on recruitment to the study.’

‘If you are transparent about what’s involved, and clear about what needs to be accomplished, I learnt that rapid public involvement is achievable. I certainly saw how the rich and detailed feedback our public contributors provided made a real difference to this project, and it was a real privilege to be even just a small part of the effort to overcome the COVID-19 pandemic.’

‘I thought the timelines would be impossible, but it’s been a really valuable and constructive experience. Public contributors have made a very important contribution to our research so much so that we realised the value and wanted to involve them further in the second stage of our study. I’d definitely recommend the HRA’s matching service to other researchers working on rapid COVID-19 studies.

‘In future, I would definitely request patient and public involvement at an early stage, especially if there was an easy mechanism to do this proportionately.

‘I hope what’s taken away from COVID-19 research is that science is important and public involvement is important.’

‘It’s fantastic to see how public and patient involvement in vitally important and urgent COVID-19 research is really making a difference. Involving people with relevant lived experience at an early stage can lead to the development of higher quality research and make it easier to recruit and retain participants – as it means research studies are much more likely to be designed and conducted in a way which is acceptable and appealing to participants.

‘We wouldn’t be able to support public involvement in COVID-19 research in such a practical way without the 56 public involvement partners from charities, universities, the NHS, and other public bodies who have collaborated with us to create the matching service. We’ve come together at a time of crisis to show that public involvement doesn’t have to be complicated to make a meaningful difference to everyone involved. It’s vital that we build on this experience and find out what else we can achieve if we work together towards our common goal of making meaningful public involvement business as usual for health and social care research in the UK’