Making transparency happen – a blog by Dr Naho Yamazaki, Head of Policy and Engagement – Health Research Authority

“When we were developing the Make it Public strategy, we found that 30 per cent of clinical trials were not registered. Even now, this is the case for more than 10 per cent of clinical trials. Our consultation asked what we could do to ensure 100 per cent registration.


In our strategy we made a commitment to register all clinical trials on behalf of sponsors, ensuring full registration of all UK clinical trials in a single location.

We introduced automatic registration for trials approved through combined review at the beginning of the year. To do this we’re working in partnership with ISRCTN, which is a World Health Organization (WHO) recognised UK registry. We will roll this out to other types of clinical trials in the future.

Automatic registration makes it the ‘norm’ because it happens as a matter of course….”

Make it Public: transparency and openness in health and social care research – Health Research Authority

“Record numbers of people are taking part in health and social care research in the UK. Research brings huge benefits to patients and service users, with the findings ultimately leading to the prevention of ill health, earlier diagnosis, faster recovery and better outcomes.

However, if those research findings are not made public in a meaningful and timely way, we do those research participants a disservice. To really maximise and value the commitment of patients, service users and healthy volunteers who take part in research, transparency and openness are essential. It also means they are more likely to take part in future studies.

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.

The Make it Public strategy signals an ambition to transform research transparency in the UK. Its vision for trusted information from health and social care research studies being publicly available for the benefit of all is one that we can all share. The Department of Health and Social Care is committed to the strategy and will continue to support the Health Research Authority (HRA) to make a real difference….”

Welcome to the (beta version) NHS Shared Research Repository

“The NHS Shared Research Repository is a pilot open access repository for the knowledge and research publications produced by staff from six NHS organisations, or in some cases groups of organisations.

The one year pilot project, launched in June 2021, is testing a repository model in which the partner organisations make their open access research outputs and other material available through a single shared NHS repository. As well as setting up the repository itself, the pilot project will test and explore how multiple NHS organisations can make their combined content accessible from a single site while also taking responsibility for their own content in that shared space….”

Barriers to Working With National Health Service England’s Open Data | Bacon | Journal of Medical Internet Research

Abstract:  Open data is information made freely available to third parties in structured formats without restrictive licensing conditions, permitting commercial and noncommercial organizations to innovate. In the context of National Health Service (NHS) data, this is intended to improve patient outcomes and efficiency. EBM DataLab is a research group with a focus on online tools which turn our research findings into actionable monthly outputs. We regularly import and process more than 15 different NHS open datasets to deliver, one of the most high-impact use cases for NHS England’s open data, with over 15,000 unique users each month. In this paper, we have described the many breaches of best practices around NHS open data that we have encountered. Examples include datasets that repeatedly change location without warning or forwarding; datasets that are needlessly behind a “CAPTCHA” and so cannot be automatically downloaded; longitudinal datasets that change their structure without warning or documentation; near-duplicate datasets with unexplained differences; datasets that are impossible to locate, and thus may or may not exist; poor or absent documentation; and withholding of data for dubious reasons. We propose new open ways of working that will support better analytics for all users of the NHS. These include better curation, better documentation, and systems for better dialogue with technical teams.


Make it Public – how our consultation is informing the development of a new strategy for research transparency – Health Research Authority

“This summer more than 700 organisations and individuals took part in our 12-week Make it Public consultation.

The consultation, which ran from June to September, asked for feedback on our draft strategy to improve research transparency. …

We’re now working closely with the Research Transparency Strategy Group to devise a final strategy before the end of the year. The group met earlier this month to consider the top line responses to the strategy and you can read the minutes of their meeting here. After their next meeting a strategy will be shared with the HRA Board in December, before being presented to the House of Commons Science and Technology Committee. You can read more about our engagement with the Committee on the transparency section of our website….”