In December 2020, the UK was at a crucial point in its response to the pandemic, with COVID-19 vaccine(s) entering the final stages of development and approval being rolled out across the four nations. As with any new vaccine or other medical intervention, there were a large number of research questions yet to be answered that would help better understand and respond to the vaccine roll out.  What made this different was the urgency of these questions and the speed at which the research community needed to respond to provide insights on:   

  • The effectiveness and safety of vaccines in the real world and with different population groups  
  • How vaccination will impact the spread (transmission) of COVID-19 and number of people infected  
  • How people will behave both in terms of uptake and as more of the population are vaccinated  
  • The strength and the duration of protection offered by different vaccines in different groups  

To support the research community in prioritising these questions, Health Data Research UK (HDR UK) recognised the need to work at pace to involve patients, carers, the public and healthcare practitioners for their views. In the space of two weeks, over 800 people had responded to a survey that asked them to prioritise research questions in order of importance. 

How were patients, carers, the public and practitioners involved?

We developed an online consultation and disseminated it via existing groups and networks of patients, public and practitioners in the week before Christmas. By the New Year there had been an  overwhelming interest and involvement, with 828 completed surveys by 5 January, demonstrating the level of interest in COVID-19 research and data and the collective determination in the fight against COVID-19.  

Of those, 546 respondents identified themselves as being a patient or carer (unrelated to COVID-19), 208 were members of the public, 74 were from health and/or care practitioners, and 66 respondents stated they had either tested positive or believe they have had COVID-19.  

What did patients, carers, the public and practitioners tell us?

Respondents were most interested in knowing about the safety and effectiveness of the vaccine. The areas that came up most often were:  

  • Long term effects 
  • How it affects those who are immunocompromised or have underlying conditions 
  • How it affects any medication they may need to take  
  • A desire for more information from research about the effects of the vaccine on fertility and pregnancy  

COVID-19 developments and updates change quickly and this was highlighted following the announcement of an additional vaccine being approved for roll out across the UK. There was a noticeable difference in comments from patients and members of the public only (this didn’t change for practitioners) with a new focus on vaccine hesitancy and take-up, in addition to safety and effectiveness.  

What was the impact of involving patients and the public?

This prioritisation exercise was completed at a very early stage in the work of COVID-19 vaccine research and was used by the COVID-19 National Core Studies to help define its work. It was important that these studies were informed by input from patients and the public to ensure access and use of data have a defined public benefit.  

“Of course, this is timely, but what’s most important is that you’re actually working with us and other patient groups etc to ensure our needs our met, enabling us to shape research and creating a big community to fight this virus together.” – Public Contributor 

The full report outlining the findings of the prioritisation exercise and key insights was shared with research funders, research institutes and other organisations aiming to gain public insights as they looked forward in determining their own priorities in this important area of work. Sharing of insights and knowledge is vital and ensures that we can combine findings and further develop our understanding. 

“This is a really helpful public evaluation of research priorities and so useful to feed through as an information source for funders” – Research Funding Organisation