Published: 30 July 2020
The NIHR has today reaffirmed its long-standing commitment to transparency by supporting the Health Research Authority’s new transparency strategy, which aims to ensure information about health and social care research is made publicly available in a way that benefits patients, researchers and policy makers.
The Make it Public strategy, launched by the Health Research Authority (HRA), highlights the importance of sharing details of research so that results inform best quality care and ensure the public can access details of all research taking place. It aims to make it easier for researchers to be transparent about their work.
The NIHR has a strong commitment to openness in research, with measures including ensuring all clinical trials are registered, results are published in open access journals and that patients and the public are involved at every stage in the research cycle.
The new HRA strategy focuses on three key areas: registering research studies, reporting results and informing participants. Measures include:
- Expecting researchers to plan how they will let research participants know about the findings of the study from the beginning
- Introducing additional monitoring to check that researchers are registering and reporting results, and to collect information about study findings
- Making information on individual research projects - and their transparency performance - available to the public
- Introducing a system to consider past transparency performance when reviewing new studies for approval.
Professor Chris Whitty, Chief Medical Officer for England and head of the NIHR, who wrote the foreword to the strategy, said: “Transparency and openness is essential in making the most of the commitment of patients, service users and healthy volunteers who take part in research. By disseminating research findings widely, we also enable further research and provide a strong evidence base for commissioning services and making health and care policy.”
NIHR spokesperson Elaine Williams said: “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.”
The HRA’s strategy was developed with oversight from a UK-wide expert group, chaired by Professor Andrew George and shaped by a public consultation held last summer.
Professor George said: “It is time for change; better support and encouragement for researchers and research sponsors, greater visibility for patients and the public and fair consequences for those who don’t take transparency seriously.”
Research participant Lynn Laidlaw from Edinburgh, who took part in the consultation, said: “I support the sanctions proposed in this strategy to ensure that everyone can access important information about research and the results of studies. No one wants research to succeed more than patients, but we need to be included if it’s to be successful.”
NIHR is leading the way in a number of projects on research integrity, transparency and avoidance of waste in research. They include:
- signing the World Health Organisation (WHO) Joint statement of public disclosure of results from clinical trials
- its statement on data sharing in an appropriate way to help deliver research that maximised benefits to patients and the wider public and the health and care system
Read the full HRA strategy online.