Naho Yamazaki, Deputy Director of Policy and Partnerships
The HRA wants to make it easy to do research that people can trust.
One of the ways we can do this is to make research transparency the norm. This is a key priority set out in the HRA's 2023-25 strategy, as transparency is fundamental to establishing trust and promoting participation in research.
Transparency also reduces research waste; if we share what research is taking place and the results, that knowledge is extremely beneficial to those planning research. It also supports evidence-based policy and practice.
Last year we commissioned a public attitudes survey, as we wanted to better understand what people think about health and social care research and to find out what matters to them, to earn their trust in research. Just over 5,000 people from across the UK were surveyed.
We found that only about half of the people asked were confident that research findings are shared without delay. So what, you might be thinking.
The survey also found that 65% of the people said they will feel more confident in the research findings if the results are made publicly available as soon as possible after the study. A similar proportion would feel more confident in the findings if the study was added to a public register before it started (65%) and if participants will be told about the outcomes of research (69%).
This suggests that whilst people have a relatively low expectation that researchers and sponsors will be transparent about research, the three areas that the HRA is focusing on to promote transparency - registration, publication of results, and communicating study outcomes to participants - are likely to have a positive impact on their trust in research.
Registration of clinical trials
I now want to focus on what we are doing on one of these three areas: registration.
We have been conducting a snapshot audit since 2015, where we look at the registration rate of clinical trials approved in the first six months of the year, to understand the proportion of researchers following the condition of Research Ethics Committee (REC) approval.
This shows that compliance has hovered at just below 90% between 2018 and 2021 -but we really want to bring this up to 100% by working with others across the research sector.
This is why, this Make it Public Week, which will take place this spring, we will be focusing on registration of clinical trials. Together with our partners in the Make it Public campaign group, we’ll be showcasing the benefits of registering trials before your research starts, and discussing any barriers that might be preventing the research community from registering trials. We look forward to sharing details with you soon.
We are also looking at evolving our audit of the data. Instead of a snapshot that only covers trials approved in the first six months of the year, we are planning to publish a list of all trials with their registration reference number that we hold, starting with trials approved in 2022. This will enhance the visibility of trials that are taking place in the UK, and also make it easier for the Make it Public campaign group members and others to track whether completed trials have a summary of results uploaded onto the registry, and their findings communicated to participants.
Registration is the first, vital step in transparency. If we start as we mean to go on, together we can have a positive ripple effect across the research landscape.