Open up access to NHS data, says nation’s heart charity
A damning report from the British Heart Foundation (BHF) today reveals how UK red tape is strangling medical research that could save lives.
The charity, which funds around £100m of medical research every year, is calling for the NHS to open up its data to the scientists it funds at universities and hospitals across the UK.
The report claims that researchers experience delays in gaining permission to access data, uncertainty about the rules governing the process of approval, and an overly complicated system that can slow potentially life-saving discoveries.
Survey figures by the BHF show the public is supportive of information from medical records being used in research. A YouGov poll found that more than three quarters (79%) of people would be happy for their doctor to share some level of medical information about them with health researchers to help develop new treatments. (1)
Professor Peter Weissberg, Medical Director at the BHF, said:
“Our NHS records are a source of potentially life-saving information and give us a unique opportunity to advance the prevention and treatment of heart disease. While data protection is clearly an important issue, the researchers we fund say they are caught up in unnecessary and inconsistently applied red tape that slows them down by months or even years, and costs them more in staff time and paperwork.”
Paul James, 54, a teaching consultant living in Alton near Stoke-on-Trent, who took part in a recent BHF research study, said:
“I’m proof that research can be life-changing, so I fully support anything we can do to speed up future discoveries. I have a genetic type of heart failure, which means that without treatment I get breathless with even simple everyday tasks. Fortunately, researchers spotted me by looking at my medical records and I was invited to take part in a trial testing the use of an old drug for a new purpose. Whereas before I struggled to walk down the street without a pain in my arm, I’m now at the gym three times a week and best of all, I’m able to play properly with my daughter.
“I’d encourage everyone to support greater access to patient data for our scientists. It’s transformed my life, and could do the same for millions of others.”
The BHF says access to data in patients’ medical records is a crucial step towards saving more lives from heart and circulatory disease, which claims around 191,000 lives every year (2). The types of information that could help scientists make important breakthroughs include details about what medication patients take, what conditions they have been diagnosed with, or when and why they are admitted to hospital.
The BHF is calling for clear legal guidance for researchers, a single approval process to access patient data, and a workable system for using records to find patients to take part in trials for new treatments.
The survey also found that more than two thirds (70%) of UK adults were not aware that the type of information held in medical records has helped with the development of new treatments in the past. More than half (59%) were unaware that medical records could help lead to new treatments in the future.
One of the most important benefits of access to patient data is to pick up early signs of potentially important, unexpected side effects of drug treatments. Other research that relies on patient data includes the search for substances in the blood that could predict heart attack or stroke risk, and studies looking at whether widely used drugs, such as statins for high cholesterol, could be effective in wider patient groups, such as everyone over 50.
Upcoming government consultation on patient data: more information and BHF response
The UK Government announced it would consider changes to the NHS Constitution to help facilitate the use of anonymised patient data for research in its Life Sciences Strategy in autumn 2011. This would make it easier for patients to be involved in research, with access to patient data set as the default, but protecting the individual’s right to opt out. This consultation is expected to be launched later in 2012.
The BHF welcomes the consultation but is calling for more to be done, including easing access to patient data more broadly. Anonymised data has identifiable information about a patient removed, but sometimes identifying patients is important. For example, when researchers are looking for potential patients to take part in a research study.
Examples of vital past discoveries made thanks to patient data include:
1950s: link between smoking and lung cancer. Similar research later proved a smoking link to heart disease.
1970s: link between high blood pressure and heart attacks and strokes.
1990s: proving the effectiveness of statins, now taken by millions to reduce the risk of heart attacks and strokes.
1. All figures, unless otherwise stated, are from YouGov Plc. Total sample size was 2072 adults. Fieldwork was undertaken between 18th – 21st May 2012. The survey was carried out online. The figures have been weighted and are representative of all UK adults (aged 18+).
2. “Coronary heart disease statistics 2010 edition”, Scarborough P et al (2010).
British Heart Foundation: London.