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 OpenPrescribing.net, 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….”