Working as a nurse in the NHS I have been asked my views by a number of people on this issue and as someone who works in the field of breast cancer research I am particular interested in this policy.
From this spring, unless you opt out, all medical data will be stored on a central data base with the aim for it to be used by medics and researchers to improve medical research in to diseases.
People would be genuinely shocked if they were aware of the state of data collection in the NHS. Thanks to the failed efforts of the last Labour Government to introduce a national IT system for the NHS which wasted £12 billion it is still not possible for GP’s or individual hospitals to share patient records electronically. If your GP refers you to a hospital it still has to be done by paper and uploaded. Even within hospitals, most have electronic notes that can be accessed by Consultants but they only tell you the basic details such as age, blood results, last clinic letter. There is no way to analyse trends in illnesses, treatments, risk factors etc.
In the research I do when a patient consents to go on to a clinical trial we ask permission to use their data for research purposes so that in the long term we can use this information to predict response rates, survival rates and side effect profiles etc. Working for over a decade in cancer research, I have seen this information leading to huge discoveries in breast cancer which has literally changed the way we treat patients and really has saved lives.
For example just over ten years ago we knew nothing about Herceptin and the HER2 receptor which predicts one of the deadliest forms of breast cancer but now is treatable with targeted HER 2 drugs because we know which women the treatment will work on. We used to perform major axillary surgery on all women knowing that some women were being over treated but we could not identify the at risk groups but now we can and so breast cancer surgery has changed. We did not even know about HRT increasing the risk of breast cancer incidence. All of this is known because woman were happy for their data to be used to spot trends and help cancer research.
The trouble is only about 20% of patients go in to clinical trials and for some illnesses such as Alzheimer’s, heart disease and mental health there is not the research infrastructure to support this data collection.
Critics argue that the database is open to abuse and if patients are worried they are able to opt out of the scheme but if we are serious about improving the health of this nation we need the ability to pool large amounts of information together to spot trends and causes for disease.