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Off the record

The concept of precision medicine – treatment tailored to a patient’s individual genetic make-up – is fast becoming a reality thanks to advances in genomic research and the introduction of electronic medical records. But before science fiction becomes science fact, we need to overcome the inherent issues surrounding the use of confidential medical records.

The field of genomics is paving the way for more effective medical treatments than ever before. Based on a patient’s individual genetic material and flagged sequences or mutations, genomics research can tell us not only the diseases that a person is most at risk from contracting now or in the future, but also how they will respond to particular treatments.

For conditions with strong links to lifestyle, such as diabetes, cancer and heart disease, pharma companies recognise that their major treatments may only be effective in 30 to 60 per cent of the population1. With genomics to guide clinical decision making on individual treatment plans, patient outcomes for these diseases and many others could improve considerably.

One of the pillars of precision medicine is the use of electronic medical records (EMR). Genomics research must be underpinned by clinical data to detail a patient’s medical history alongside their genomic data. This allows for connections to be made more easily between specific mutations and previous illnesses, long term medications or contributory lifestyle factors. Couple genomics and EMRs with digital health information – such as that gathered by an Apple Watch or Fitbit – and the overall picture of a patient’s health and well-being becomes very clear indeed.

While the infrastructure to process and analyse EMR data is still very much in development, the potential benefits are massive. The life sciences sector could have access to a database of over 55 million patient records, updated daily and collected free of charge, leading to quicker medical discoveries and breakthroughs than ever before.

In the USA, EMRs and genomics research already goes hand in hand.  eMERGE – the Electronic Medical Records and Genomics Network – was launched in September 2007 to bring together researchers from genomics, statistics, ethics, informatics and clinical medicine. The idea behind the research network is to use EMRs as a resource in genomic research and to use the findings in clinical care to improve prevention, diagnosis and treatment.

Our medical records contain extremely personal and sensitive information and are protected in law by the Data Protection Act 1998, the Access to Health Records Act 1990 and the Medical Reports Act 1988. Medical professionals have access to patient records on a ‘need to know’ basis and they are strictly bound by confidentiality agreements to ensure details are not disclosed to third parties. With such tight restrictions surrounding EMRs, it is difficult to see how the tide will turn on confidentiality without major controversy.

One solution is  to anonymise the data; passing the EMRs to third parties for research but with the name, address and any other personal details removed if patients consent. If this approach is favoured, how the records will be stored must be a primary consideration. Ensuring medical records remain confidential – anonymised or not – is essential and the private sector will need to guarantee the same levels of security as NHS England.

Another question over the use of EMRs centres on who would be using the information. Patients may be more receptive to researchers using their information to help future generations, but may draw the line at pharma companies who will profit from it. Can we selectively waiver our confidentiality? If access is granted to pharma companies, there may be further issues to answer about whether the information is shared outside of the UK – for example multinational companies sharing data with other countries they operate in.

While the buzz around EMRs for research remains on the medical benefits, there are certainly many legal, ethical and security questions to answer before widespread access to medical records becomes a reality for the UK genomics industry.


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23rd November

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