Data Sharing In Healthcare Must Be Encouraged

Data Sharing In Healthcare Must Be Encouraged

In 2015, Google-owned DeepMind announced a new partnership with the Royal Free NHS Trust (RFT) that many predicted would herald an exciting new era of healthcare. They would apply machine learning algorithms to NHS data to create the healthcare app ‘Streams’ — an alert, diagnosis, and detection system for acute kidney injury. A spokesman for RFT explained: ‘The RFT approached DeepMind with the aim of developing an app that improves the detection of AKI (Acute Kidney Injury) by immediately reviewing blood test results for signs of deterioration and sending an alert and the results to the most appropriate clinician via a dedicated handheld device.’

Since then, Streams has been rolled out across a number of NHS trusts. DeepMind, meanwhile, has continued to apply its machine learning technology in other clinical trials, including early detection of diabetic retinopathy and the treatment of head and neck cancers. However, it has not all been plain sailing. An investigation by the Information Commissioner’s Office (ICO) into the data-sharing agreement, without which the work would not have been possible, found that the Royal Free had failed to comply with the data protection act when it handed over details of 1.6 million patients to DeepMind. Elizabeth Denham, the information commissioner said of the findings that, ‘Our investigation found a number of shortcomings in the way patient records were shared for this trial… Patients would not have reasonably expected their information to have been used in this way, and the Trust could and should have been far more transparent with patients as to what was happening. We’ve asked the Trust to commit to making changes that will address those shortcomings, and their co-operation is welcome.’

While the ICO should be praised for its light touch and considered approach, the issue highlights what is likely to be an ongoing problem for healthcare providers looking to use the wealth of data they hold about their patients to its fullest potential. This was also evidenced by last year’s decision by UK government ministers to scrap the care data plan to link GP records, following a public outcry about whether patients had been given the chance to opt out. Indeed, an independent report into the growth of artificial intelligence commissioned by the UK government, ‘Growing the Artificial Intelligence Industry in the UK’, has recommended the secure sharing of anonymized data from patients’ health records with private firms if the technology is going to be successfully applied in the sector.

There is an understandable sensitivity around the collection and sharing of medical data, yet for organizations to truly benefit from data analytics, they need to take an open approach. This means doing everything possible to encourage patients to share their data, as well as sharing data with different hospitals and technology companies.

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