Finding out what health and social care research is happening, or what the results of completed research are, can be frustrating. The information may be publicly available, but unclear, partial or obscure. In some cases, the information is not publicly available at all.
1 Corinthians 13:12
"Now we see things imperfectly, like puzzling reflections in a mirror, but then we will see everything with perfect clarity. All that I know now is partial and incomplete, but then I will know everything completely…” (1 Corinthians 13:12)
Research is complex; it takes time and resources and often happens in an environment where there are competing pressures for researchers and research sponsors. However, it is simply no longer acceptable for research transparency to slip down the priority list.
We need greater transparency in research.
Patients, scientists, doctors, policy makers and others need to make decisions and they need access to publicly available research findings so that their decisions are based on good quality, unbiased data.
A patient may want to decide about what treatment is appropriate for them, or whether they should take part in a clinical trial. To do this they need both complete information, but also information that is understandable and unbiased.
Researchers, doctors and policy makers need to have information to decide what treatments are effective and what research avenues to explore. The failure to publish ‘negative results’ can condemn others to waste time and precious resources (as well as the burden on those taking part) doing research that is futile. More seriously the failure to describe problems or issues found in research may put future participants at risk.
The second case for research transparency is that it is the right thing to do. Research relies on public goodwill. Most research and the research infrastructure is funded through taxation or charitable donations, so public confidence in the proper conduct and benefit of research is essential. In the 1990s there was a loss of public confidence in how researchers used patient tissue for research, following revelations about how tissue was used, in particular at Alder Hey Hospital. One of the issues there was that people were not aware of what was happening and there was a sense of everything happening behind closed doors.
Transparency in research is no longer optional. We need to make information about research available from the beginning of the study, unless there are legitimate reasons for delaying disclosure. And we need to make the results of research studies public within a reasonable timeframe. We also need to do this in a way that does not unnecessarily burden researchers or make them repeat processes that they are already doing for others – so they are freed up to spend as much time as possible doing good research and looking after their patients.
One of the most energising aspects of my life as a young research student was working with a charity representing patients with leukaemia. Not only did they want to raise money for our research and take part in studies, but they wanted to know about our results – for their benefit and for the benefit of future patients. We worked in partnership with those patients, who felt that the results belonged to them as much as it did to us.
Of course, many clinical researchers already involve their patients in research, but we need to do this more systematically. We need a culture in which making research, and research results, available to all is seen as integral to the research process.
Getting the balance right between driving improvements in research transparency and avoiding unreasonable or unnecessary requirements on researchers is crucial. That’s why we have established an expert group to help us develop our strategy for improving research transparency.
The strategy, requested by the House of Commons Science and Technology Committee in its report on clinical trials transparency, will describe what we are already doing to improve transparency and also set out proposals for stepping up our approach. The expert group – made up of a cross-section of the research community as well as patient and public representatives - will shape those proposals, and we will consult publicly later this year before finalising our approach.
Of course, the HRA is not the only body working to promote transparency, nor should we be. From funders to publishers and all the many other research players in between, we work together to bring about improvements in our respective areas of the research landscape and make sure our approaches are complimentary. However, we see it as our duty - as the national body for all health and social care research - to take a leading role.
This is an exciting opportunity to help shape the nature of research in the future, and to ensure that the research environment in the UK not only facilitates the very best research, but also that research participants and the public can be fully engaged in it.
Professor Andrew George is a Non-Executive Director of the Health Research Authority and is Chair of the new Research Transparency Strategy Group