Our Medical Director Professor Peter Weissberg explains why changes to how the NHS collects and stores your GP records are so important.
Last week, if you live in England, you might have seen a leaflet come through your letterbox explaining how your GP records can help to improve healthcare and research. It’s part of efforts to improve public awareness ahead of data from these records being more widely used to help fight a number of conditions, including cardiovascular disease.
The data held within patient records in the NHS is a goldmine of information that can help improve the prevention, treatment and cure of health conditions. From planning services for patients, to better understanding what may cause diseases like cancer, Alzheimer’s or heart disease, the information here can help scientists make vital, life-saving discoveries.
We’ve seen examples of this in the past where researchers have been able to highlight aspects of lifestyle that affect the risk of developing disease. This past week marked the 50th anniversary of the US Surgeon General report on smoking, which for the first time in the US highlighted the significant health harms to the general public from smoking. The report came about following research looking at patient records that established the link between smoking and lung disease – with similar work highlighting the risk of developing cardiovascular disease caused by smoking.
Future breakthroughs faster
But this discovery required the researchers to follow the health of patients over a number of years before the links were established. Today, with a pool of patient records spanning a number of decades, researchers can crunch the numbers and more quickly establish findings that will benefit patients.
The data held within patient records in the NHS is a goldmine of information that can help improve prevention, treatment and cure
For example, previous initial research had suggested that people taking angiotensin receptor blockers, a type of drug widely used to treat heart failure and high blood pressure, might have an increased risk of developing cancer. By looking at the GP records of over 370,000 patients who were using this treatment, researchers were able to show that there was no evidence of an increased cancer risk in these patients – providing reassurance to clinicians and patients.
Better use of our health records could improve treatments in the future – but they can also help ensure that the treatments you receive today are safe. Perhaps their greatest potential lies in monitoring treatments once they have been approved for use in patients.
The story of drug development doesn’t stop with a successful clinical trial in patients – it’s part of an ongoing process that needs to be carefully checked to ensure that treatments designed to improve one condition do not cause unexpected harm in relation to another.
For example, one arthritis treatment was withdrawn in 2004 after it was found to increase the risk of heart attack and stroke. This link could have been more quickly established with better use of larger pools of data – which is exactly what the NHS in England is seeking to create by using patient records from all GP surgeries.
What this means for you
You can choose whether your records are used. If you are happy for your information to be used to improve healthcare you need not do anything. The leaflet being distributed explains how to opt out of sharing data should you have concerns. But I hope that your decision takes into account the safeguards that are in place to ensure personal information is protected and how we can all collectively help medical research by sharing our records.
The British Heart Foundation has long-supported improvements to enable researchers can make full use of the pool of NHS data available. That’s why we are supporting a campaign launched alongside other leading health charities, including the Wellcome Trust and Cancer Research UK, to help inform the public about the benefits of sharing your patient records for research. For more information, visit Patient Records.