No surprises in data collection, management and use
For clarification, the Wecker Associates application is featured on the Office of Data Release’s register www.gov.uk/government/uploads/system/uploads/attachment_data/file/675212... and so presumably followed Public Health England’s standard processes. No freedom of information request was required (and was presumably never made). Further details on what was actually shared can be found on the use MY data website at www.usemydata.org/newsx.shtml. Given how the data was a table of aggregated counts (https://data.gov.uk/dataset/epidemiology-of-lung-cancer-tumours-in-engla...), it is hard to see it as a genuine controversy.
The key point is surely the need for greater transparency and clarity, about how our data is collected, managed and used, so that patients can be informed and make a clear choice about what they are comfortable with. The fundamental principle of “no surprises”, as embedded throughout the report of the National Data Guardian*, is paramount.
*National Data Guardian for Health and Care 2017 report: Impact and influence for patients and service users https://assets.publishing.service.gov.uk/government/uploads/system/uploa...
Competing interests: Chris Carrigan is an Expert Data Advisor to use MY data.