In a statement on 5th December 2011, David Cameron announced that he wants to make huge numbers of patient records in England available to the life sciences industry in order to accelerate drug development.
NHS data has been looked at by external organisations as long as clinical research has been taking place. What’s new in the government’s proposals is that every patient in England could potentially become a ‘research patient’ by opening up access to their medical records. Two issues are at stake here, first of all patients’ consent and secondly patients’ confidentiality.
However, I really do not believe that by opening up patient records to external research companies, the government is giving them carte blanche to manipulate in any way they want the data they will have access to. We have to look at the big picture and the main reason for making this change happen and that is to aid additional research to take place that would not have been the case because the NHS hasn’t got the time, nor the human and financial resources to do it themselves.
The NHS has some of the most detailed and comprehensive patient data in the world and by using this data we can improve research, innovation and the development of medicines in the UK. In practice this could mean that commercial companies could be looking at previously untapped massive data sets across a range of therapy areas and identify trends or form a hypothesis based on those data. Companies could come up with potential projects that otherwise might not have been thought about. Surely this is to the benefit of patients.
Yet many voices are opposed to those plans as they believe that it could threaten patient privacy. My response to this is that the pharmaceutical industry already has robust confidentiality safeguards in place and is highly regulated, making the chances of breaches very slim. Any external commercial organisation using that data in an unethical way would be shooting itself in the foot.
Additionally, the data will be anonymised, which means that it will be impossible to trace back data to individuals. Also, it’s unlikely that breaches in confidentiality would happen any more or any less with commercial companies than it would within the NHS itself.
This new government initiative is to be welcomed as I truly believe that the data that will be made available to commercial companies will be used in an ethical way and very possibly for the good of medical research.