We Need Easier Access to Patient Data

There need to be robust checks in place to protect the confidentiality of patients, but at the moment it's too difficult to make the new breakthroughs that NHS records make possible. It's slowing down discoveries, and it makes research more expensive.
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Patients' medical records are a unique source of potentially life-saving information. Since the formation of the NHS in 1948, doctors have been keeping information about every person's medical history to help treat them in the best way. This information has painted a detailed picture of the health of the nation over time.

Patient data have also played a hugely important role in research discoveries. Medical researchers have used these data to make vital discoveries - searching for patterns that can prove the effectiveness of new treatments, the link between risk factors and heart disease, or the validity of new tests. Scientists also use patient data to recruit people for clinical trials, leading to new drugs that help them.

But access to medical records is not straightforward. As the UK's biggest single independent funder of cardiovascular research, we've become familiar with how difficult the system can be.

At present, scientists need approval to access data from lots of different organisations. It's complicated to identify people who might want to take part in research, and it's not clear what the law requires them to do to access patient information.

That's why we've launched a new report which calls on the government to make it easier for researchers. Our report, Clear and Present Data, calls for a single approval process for accessing patient information for research; a simpler way to identify potential research participants using medical records; and a clear guide to the law on how researchers can access patient data.

We know access to data can make a real difference. For example, it took many years before a link between taking common anti-inflammatory drugs and heart attacks became apparent. Had researchers had access to the records of all patients receiving these drugs, they would have quickly noticed that more of them were having heart attacks than would be expected.

There need to be robust checks in place to protect the confidentiality of patients, but at the moment it's too difficult to make the new breakthroughs that NHS records make possible. It's slowing down discoveries, and it makes research more expensive.

The government seems to be going in the right direction, recently announcing possible measures that would remove some of the red tape stifling life-saving research. We support some of these measures but we're asking for the government to go further. That's why we're pushing for a simpler system of regulation which has both confidentiality and patient benefit at its heart.