By Michael Walsh, BBSRC Policy Fellow at the Society of Biology
In the digital age, so many of us feel that it is our right to have access to as much information as possible. However, certain exceptions apply: information relating to ourselves shouldn’t be freely available, and huge storms gather whenever leaks of personal data from medical or financial institutions occur. So it is perhaps surprising that the NHS in England has announced plans to place huge amounts of (anonymised) patient data in the public domain, a programme called care.data.
The plan is to collect and store healthcare data alongside some personal identifiers in a central database. This information would then be ‘pseudonymised’, and made available to healthcare professionals, academics, and (here’s where a lot of the controversy is) private companies. On the face of it this may seem like a worrying development, as statistics on our health are some of the most important and private information about us. However in a drive to reassure us, the Government is sending out a leaflet to households across the country outlining the purpose and benefits of the exercise, and also how to opt out. They argue that the information will be secure, and will lead to better patient care through improved planning and identification of risk factors.
Critics have been quick to condemn what they see as interference from ‘Big Brother’, and to point out the potential for shady uses of this information: if drug companies or insurers are allowed access (and it seems like they will be) then there are worries that they might be able to identify specific patients. The right for patients to know who has accessed their data and the ease with which they are able to opt out are also points which have been raised.
Other groups such as Nature have welcomed the potential benefits of the programme, while warning against abuse of the system and lack of clear information to patients on some topics. A survey last year by the Wellcome Trust showed that people generally agree with this point of view, and are positive on the use of their anonymised medical data within the NHS but less comfortable when it comes to it being shared with private companies and employers. It is clear that the positives from the scheme are widely recognised, but that proper safeguards and perhaps limits on who can access data are desired.
It is clear that there is great potential for both benefit and misuse, and it will take time before we know the net impact of care.data. Though one thing is certain, knowledge is power!