The HRA’s new Make it Public transparency in research strategy has won praise and backing from patients, industry and academia. Developed by the HRA in partnership with NHS Research Scotland (NRS), Health and Care Research Wales and Health and Social Care Northern Ireland, the new strategy aims to build on good practice and make it easy for researchers to be transparent about their work.
The strategy is about making transparency ‘the norm’ in research and making information more visible to the public - the importance of which has been highlighted by the COVID-19 pandemic.
Professor Jacob George, from the University of Dundee, is backing the new strategy which he said was even more important following the COVID-19 pandemic.
Professor Jacob George, Professor of Cardiovascular Medicine and Therapeutics, with his team turned around compliance with trial registration and reporting at their Clinical Trials Unit. The work that University of Dundee team has done in this area has resulted in the University having a 100% reporting rate.
He also took part in the consultation as part of the strategy in Edinburgh last September.
Professor Jacob George, University of Dundee
‘This is an important initiative that academia must support.
‘The current COVID-19 pandemic further highlights the importance of making data available and transparent to all researchers in order to facilitate collaborative discoveries and find solutions.’
Professor Lefkos Middleton, Principal Investigator at Imperial College London who is working on the CHARIOT COVID-19 Rapid Response (CCRR) study, said the strategy would make it easier for participants to be kept fully aware of research.
Professor Lefkos Middleton, Principal Investigator at Imperial College London
‘We know that when participants feel engaged and included in our research, they are more likely to remain on a study. Having participants that understand what participating means helps keep retention rates high, resulting in better quality data and a more successful research study.
‘We absolutely support the HRA’s transparency strategy, and welcome guidance on how we can improve our processes, making it easier for participants to be kept fully aware of research activity and findings. We consider our participants to be collaborators with us in our research and will do all we can to ensure they feel appreciated and valued.’
The Association of the British Pharmaceutical Industry (ABPI) which exists to make the UK the best place in the world to research, develop and use new medicines said they were committed to working with the HRA to make the new strategy happen.
Bryan Deane, ABPI’s New Medicines and Data Policy Director
‘The ABPI is a huge supporter of the Make It Public strategy, and the industry has long been committed to registering all clinical trials and making the results public.
‘But we want to go further, to ensure that research findings are not just available, but widely accessible and as easy to understand as possible.
‘We’re keen to work with others in the research sector – through the Make it Public strategy - to make it happen.’
Professor Kieran Walshe, Director of Health and Care Research Wales, who worked with the HRA on the new strategy, they were pleased to have contributed to the UK joint consultation on the Make it Public strategy.
Professor Kieran Walshe, Director of Health and Care Research Wales
'It’s vital that we help increase public access to research findings to ensure volunteers not only know the results of the research they have taken part in but also how it might help them or their family and friends in the future.’
Margaret Grayson, a retired radiographer who was diagnosed with breast cancer in 2004, attended the Make it Public consultation workshop in Belfast last year. Since her retirement in 2010, Margaret has become involved in research as a patient advocate.
‘As a cancer patient, I am passionate about research and believe that excellence in health and social care is based on high-quality research. It is important that all research findings are published, not only for researchers and funders, but also shared with the people who consented to be part of that research and with the wider public. Transparency is essential to build trust and confidence and to encourage people throughout the UK to be involved in research.’
National Institute for Health Research (NIHR) spokesperson Elaine Williams also voiced her support.
Elaine Williams, NIHR spokesperson
‘NIHR has a long-standing commitment to transparency and we are delighted to support HRA’s Make it Public strategy. Never has transparency been more important with the widespread and rapid research being undertaken globally in response to COVID-19.
“Transparency of research information, be that knowing what research is underway or the results of research, is essential. We want to encourage more people to take part in research, so ensuring we actively tell participants what their study found is vital to broadening participation. Key to the strategy’s success will be making transparency the norm and achieving that in a streamlined and proportionate way.’