Public Health England (PHE) has come under fire after handing over data on nearly 180,000 lung cancer patients to a firm affiliated with tobacco companies.
The information was sent to US consulting firm William E Wecker Associates after it issued a Freedom of Information (FOI) request to PHE.
Although the patient data was anonymised, PHE has received backlash for handing over the data without the consent of patients.
According to The Telegraph, which broke the story, the data comprises every case of lung cancer diagnosed in England between 2009 and 2013.
William E Wecker Associates describes itself as “a statistical and applied mathematical consulting firm [that] provide consulting services and sophisticated data analysis for corporate decision making, research and development, and expert testimony”. It is based in Jackson, Wyoming.
The firm reportedly has business ties to tobacco companies Philip Morris International, Lorillard and Japan Tobacco International.
However, William E Wecker Associates has also worked with numerous businesses outside of the tobacco industry, including the American Medical Association.
Dr Jem Rashbass, national director for disease registration and cancer analysis at PHE, suggested the nature of the data shared with the firm was routine for research of its sort.
“This is anonymised information of a kind that we regularly provide for cancer research,” he said.
“We have very strict processes for managing patient data and fully comply with NHS requirements for handling it.
“No identifiable patient information has been released and prior to the disclosure we thoroughly checked the study protocols which stated clearly that it is a piece of medical research. We have a duty to provide data for health purposes when its disclosure is not subject to any exemption.”
Despite this, data privacy activists Big Brother Watch labelled the disclosure by PHE “unacceptable”, and called for an inquiry by the Health Select Committee.
A statement from the group read: “It is appalling that Public Health England has given away 180,000 cancer patients’ confidential information to a commercial firm… This release of such sensitive data could only increase patients’ suffering and many of those affected are rightly outraged.
“This government needs to understand the importance of data protection and consent in today’s world. It makes absolutely no sense that cancer patients lack consent over their medical records. Unfortunately, the new Data Protection Bill currently going through parliament contains so many flaws and loopholes that it appears they are still not getting the message.”
Consent over data sharing in healthcare has proved a thorny issue in recent years. Google DeepMind’s work at Royal Free NHS Foundation Trust hit headlines earlier this year and was ultimately found to have failed to comply with the Data Protection Act.