Sharing your patient record can help researchers save and improve lives
Patients’ medical records hold valuable information that could help save and improve the lives of others. By allowing researchers access to the information contained within medical records, patients contribute towards understanding the causes of disease, developing new and better medicines and identifying new public health risks such as outbreaks of infection.
On 13 January 2014 leading medical research organisations including Cancer Research UK, the British Heart Foundation and the Wellcome Trust, launched a campaign to raise awareness of the importance of sharing data from our medical records with researchers.
Their campaign coincides with a leaflet drop by NHS England to all 22 million households in England to explain changes in how data from our health records is collected from GP surgeries.
Under the changes, researchers in academia and the pharmaceutical industry will be able to access anonymised data collected from health records. Patients will be given the right to object to their data being stored within a central repository and accessed by researchers.
More information about the joint campaign is available on the Wellcome Trust’s website at understandingpatientdata.org.uk
A useful Q&A on why patient data is useful for research is also available on the MRC blog Insight.
The following are just a few examples of research which relied on the use of patient data:
Dispelling the MMR vaccination link with autism
A small and controversial study in 1998 suggested that measles-mumps-rubella (MMR) vaccination might cause autism, leading to a fall in MMR coverage among children. A subsequent MRC-funded study at the London School of Hygiene and Tropical Medicine tested this by using the medical records of more than 5,000 children. It was able to clearly show that MMR vaccination is not associated with autism or developmental disorders. Vaccination rates among children have risen steadily since the publication of this study. However, the effects of insufficient immunity to measles are still visible today as a result of the previous false findings.
Improvements in child asthma as a result of the smoking ban
Smoke-free legislation was introduced in Scotland in 2006. Researchers in Scotland used electronic patient records from 2000 to 2009 to explore whether the smoking bans affected the number of children admitted to hospital for asthma. Their work showed an almost 20% reduction in hospital admissions as a consequence of the smoke-free legislation, illustrating the wide-reaching benefit of the bans for respiratory disease.
The potential anti-cancer benefits of a diabetes drug
Metformin is a drug widely used by patients with type 2 diabetes. It has been observed that patients taking Metformin are less likely to have cancer, so researchers used the medical records of patients prescribed the drug between 1994 and 2003 to test and confirm the hypothesis that Metformin decreases the risk of developing cancer in diabetic patients. It is thought that the drug exerts this effect by activating a cancer suppressor gene. Clinical trials are taking place to help further our understanding of this relationship, which could potentially lead to the development of novel cancer treatments.
Birth outcomes following cervical surgery
Cervical screening in Wales starts at age 20 compared to age 25 in England. There has been some concern that screening, especially among younger women, can lead to surgical treatment which may have a harmful effect on future pregnancies. To explore this, researchers looked at the health records of over 40,000 women in Wales. They found that surgical treatment following screening did not increase the chances of mothers having pregnancy complications such as premature births or low birth weight babies, confirming that cervical screening is safe.
Effect of smoking ban on pregnancy outcomes
Women who smoke, or are exposed to tobacco smoke, during pregnancy have an increased risk of giving birth early and having low birth weight babies. In 2006 researchers used 14 years’ worth of health records to find out whether the introduction of smoke-free legislation in Scotland had an impact on these pregnancy complications. They found that the numbers of preterm deliveries and low birth weight infants dropped in the three years after the ban was introduced – evidence which supports the public health benefits of smoke-free legislation.
Exploring the link between anti-depressants and self-harm and suicide
Selective serotonin reuptake inhibitors (SSRIs) are drugs which are commonly prescribed for depression. There have been concerns that SSRIs may promote self-harm and suicidal thoughts, particularly among adolescents. In 2005 a study analysed the health records of over 140,000 patients and found that SSRI use in adults is not associated with a greater risk of self-harm or suicide. However, it was observed that patients aged 18 and younger have a slightly higher risk of self-harm. This finding supports existing advice to prescribe SSRIs cautiously to children and teenagers.
Early-term birth and the risk of special educational need
Pre-term babies born more than three weeks early are known to have a higher risk of neurodevelopmental problems, which can lead to special educational needs (SEN) later in childhood. However, the risk of SEN associated with early-term births – when mothers choose to deliver their babies early – is not as clear. Using medical and school records for more than 400,000 children, a study in Scotland was able to show that the risk of SEN increases steadily with increasing prematurity. This suggests that choosing to give birth early is not a risk-free choice.