The UK is very fortunate to have a well constructed digital medical record system covering all of the 60 million citizens in these islands.
The computerised GP record holds many treasures, some yet undiscovered, recognising new associations between medical conditions or events which will enhance our understanding of disease and treatment.The Hospital Episodes Statistics (HES) database similarly holds a wealth of information. The power that can be generated by linking just these two is very considerable indeed, let alone linkage between many other databases, medical and non medical.
The value of this is twofold: it offers the ability to develop medical advances in diagnosis, treatment and innovation, as well as creating a huge commercial opportunity to increase the wealth of the country hopefully for the benefit of all.
However, to be able to utilise this national resource our communications and ethical governance need to be developed much further than currently, and move at the same speed as developments in medical science and computing technology.
Some members of the public will be aware of the use of medical records, the power of data linkage and the value of the pseudonymised medical record. However, the general understanding of the law, the protections applied to data and the process of information governance is poor, so there is a need for clear information and a public debate about what is and what is not acceptable to the data donors – that is the patients, or you and me.
The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.