Will you share your data?

Until very recently the name “care.data” was not very well known but now it is. Dr Harry Brown looks at why as it has forced a U-turn from the authorities and for the roll out of this previously obscure programme to be postponed for six months:

For those not in the know, this originated from the Health and Social Care Act 2012. This would allow an English organisation, the Health and Social Care Information Centre to fuse databases from both GPs and the hospital sector. The NHS number, which is a unique number attached to each patient, would maintain a potentially identifiable link of the patient journey between primary and secondary care. However there is a caveat, patient identifiable data could be released in special emergency situations. My concern would be how will this be decided and by whom? Notwithstanding this, the research benefits of this information could be potentially immense, so why the outcry?

Let’s look at the benefits first—they are pretty obvious—this enormous collection of information will be able to map a patient journey through the health service. Linking data and diverse events and analysing this vast mountain of information could yield invaluable information about, for example, emerging diseases, drug side effects and unexpected mortality and morbidity events—the list is potentially endless. Also, this huge data warehouse could also provide public health information, a view on the efficiency of the NHS and monitoring the use of resources. So far so good, we are being asked to contribute our data to help a worthy cause that could potentially help all of us.

The problem is what happens to this data once it is released from traditional medical sources such as GPs. Patients in general have faith in their doctors who have demonstrated over many years that they are trusted guardians for their patients’ medical records. However this new organisation and programme has no proven track record.

More worryingly in this modern world, where digitally held records are now considered standard practice, the public has witnessed many high profile leaks.

Another scenario that may worry many people including myself, is who may legitimately have access to this database? According to a recent article in the Guardian¹ it stated “in the eyes of the law, the government can’t distinguish between a request by an insurance company and a medical researcher to access the database. For them, it makes no difference.” This is a worrying development. However I recently saw in the BMJ a news article which stated that legislation will be forthcoming to prevent the commercialisation of care.data.²

The authorities now have time to rethink this project and how this will be marketed to the public. They will have to reconcile the two opposing forces, the substantial case for the benefits of this programme versus the real risks of data leakage. The authorities need to be abundantly sure this information does not fall into the wrong hands and patients who contributed this data are fully satisfied to the use and access of their medical records. To add to the confusion different parts of the UK tackle this issue in different ways.

A clear message and statement of intent needs to be made and an extensive publicity drive will have to be undertaken. We have the technology to secure the data as witnessed by the banking sector and online retailers such as Amazon who have huge businesses underpinned by secure online access. It should be made clear, that other than genuine medical research, no other party including commercial organisations or other government departments should have any access at any time. The process needs to be transparent and overseen by a powerful committee who should have the protection of patients at heart. Only then can this worthwhile project proceed and succeed.

Dr Harry Brown, GP, Leeds

1. www.theguardian.com/healthcare-network/2014/feb/28/patients-need-control-information-care-data accessed 2-4-14

2. Kmietowicz Z. New legislation will ban sale of patients’ data for commercial uses BMJ 2014; 348: g1910