The Daily Telegraph today has reported that medical data from about 180,000 patients was given by Public Health England to a company working for Philip Morris, one of the world’s largest tobacco companies.
Stories like this understandably make people feel uncomfortable. If you were a cancer patient, would you want information about you being used to further the goals of the very organisation that might have been partly responsible for your cancer?
But, let’s look at it a different way. If the information that was released to William E Wecker Associates was not only anonymised, it was pooled data (statistics) about trends in cancer. It’s really important that the best evidence possible – high quality data – is used to inform discussions about causes of cancer. These statistics should be available to everyone so that they can be analysed, understood and used to drive new knowledge. Shouldn't we want the tobacco companies to see the data as well?
The Cancer Registry (the National Cancer Registration and Analysis Service, which is part of Public Health England) collects information about every single cancer patient in England. This is important to help understand cancer better, and to make sure that people living with cancer receive the best possible care and support. The quality, scale and accuracy of the information held on cancer in the UK is unmatched anywhere in the world. In order to have as much high-quality data as possible, the Cancer Registry operates on an opt-out basis. A study by Cancer Research UK and Macmillan in 2016 found high levels of support for both the Registry, and the opt-out approach: 79% of people living with cancer were positive about the principle of cancer data use. However, awareness was too low, and work is underway to provide better information about the registry and how it uses cancer data.
As part of providing information for cancer patients, PHE need to be able to explain the processes by which requests for data are reviewed. If identifiable data was requested, both the purpose and the user should be assessed. The example reported by the Telegraph is different because the data was not identifiable, and could have been openly published. If it had been released more widely, and if patients knew more about the way data from their records could be used for care and research, I doubt many of the concerns that are being discussed today would have arisen.
Jem Rashbass from Public Health England has now issued the following comment:
"The absolute responsibility for PHE is to make sure we never compromise patient confidentiality with any data we release. I recognise that this collection of reports in the Daily Telegraph may make the reader think we have been careless and shared patient data with the tobacco industry. We have not. We do not endorse the work of the applicant but the data released was anonymised to the extent that we could make it openly available to anyone.”
Following the article, use MY data coordinated questions from its members seeking clarification from PHE. The responses received from Public Health England, together with the specific questions asked can be found here.