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Why do researchers need your information?

Improving the safety of oral contraceptives
Monitoring the safety of drug treatments Improving the safety of oral contraceptives  UK prescribing guidance for oral contraceptives has been improved on the basis of research undertaken using linked general practice datasets.

The use of primary care records is particularly important to understand the risks and effects of treatments which are taken for many years – and which are not easily studied using a traditional ‘clinical trial’ approach. Primary care records are life-long, and can be linked to other datasets.  Better understanding of the side effect profiles of oral contraceptives was achieved by research in the UK using linked GP records over a 50 year period (1960s – current day).  There are subsets of women for whom these treatment have adverse side effects (e.g. smokers) – research has enabled these sub-populations to be defined, and this knowledge has subsequently informed treatment guidelines. This required linkage of primary care data with mortality and cancer registries.  This work was only possible in the UK because of the primary care records within the NHS.
Orlistat and obesity
 MONITORING THE SAFETY OF DRUG TREATMENTS Orlistat and obesity There have been concerns that orlistat – a drug prescribed to treat obesity – increases the risk of liver problems. Researchers from LSHTM linked data from the Clinical Practice Research Datalink and Hospital Episode Statistics to show that this isn’t the case and that the drug is safe to use.
Blood pressure picture
Monitoring the safety of drug treatments Showing that a drug commonly used to treat high blood pressure and heart failure does not increase the risk of cancer Over 750,000 people in the UK are living with heart failure and around one in three adults have high blood pressure. Many of these people are prescribed drugs called angiotensin receptor blockers (ARBs), but studies had suggested that people using ARBs might have an increased risk of developing cancer. By looking at the GP records of over 370,000 patients who were using ARBs, researchers could show that there was no evidence of an increased cancer risk in these patients. This study is the largest ever to look at ARBs and cancer risk, and would not have been possible without access to the 5 million anonymised records in the General Practice Research Database.

Angiotensin receptor blockers (ARBs) are a type of drug widely used to treat heart failure and high blood pressure.  Previous laboratory studies indicated that ARBs can promote new blood vessel formation and cell growth, leading to a theory that these drugs may promote cancer development. A subsequent clinical trial suggested that people taking ARBs might have an increased risk of developing cancer, but the trial was too small to reach a definitive conclusion.
To address this important question, researchers analysed anonymised data from 377,649 patient records from the General Practice Research Database, comparing the health outcomes of patients taking ARBs with those of patients taking an alternative treatment (ACE inhibitors). All patients had received treatment for at least a year.  They showed that there was no evidence of an increased cancer risk in patients taking ARBs.
British Heart Foundation
Influenza surveillance
FINDING OUT ABOUT RISK FACTORS ASSOCIATED WITH DISEASE Influenza surveillance Researchers looked at data on vaccinations and critical care bed occupancy to find out why the 2010/2011 influenza season was so severe. They discovered that a shift in infections from children to adults contributed to the impact of the season. This led to a long-term programme, which started this year, to extend influenza vaccination to children.
Effect of smoking ban on pregnancy outcomes
FINDING OUT ABOUT RISK FACTORS ASSOCIATED WITH DISEASE Effect of smoking ban on pregnancy outcomes Following the introduction of smoke-free legislation in Scotland in 2006, a study was carried out using data from the Scottish Morbidity Record (SMR2) to show that the ban was associated with a drop in the number of preterm deliveries and low-birth weight infants.
Women with diabetes
FINDING OUT ABOUT RISK FACTORS ASSOCIATED WITH DISEASE Women with diabetes have a greater relative risk of having a heart attack compared with men with diabetes If you have diabetes, you are more likely to develop coronary heart disease than someone without diabetes. However, the level of risk of having a heart attack for women compared with men was previously unclear. By analysing data from around 240,000 patient records, this study, funded by the British Heart Foundation, demonstrated that women with type 2 diabetes are at a much greater relative risk of a heart attack than men with diabetes even when adjusted for other risk factors.

Although type 2 diabetes is known to be associated with an increased risk of heart attack, whether the level of risk differs between men and women was unclear. Previous clinical studies were inconclusive because they restricted recruitment to one gender only, or were too small to give definitive results.
By analysing thousands of records from the General Practice Research Database, researchers identified around 40,000 men and women with type 2 diabetes and around 200,000 without diabetes. They compared how many people in each group had experienced a heart attack and took into account other risk factors, such as weight, smoking, high blood pressure and cholesterol levels, to try and pinpoint the risk caused specifically by diabetes. They found that the risk of having a heart attack was much higher in women with diabetes than men with diabetes of similar age-groups. Women aged 35 to 54 years were five times as likely to have a heart attack compared with women without diabetes, whereas men of similar age had double the risk of their healthy counterparts. Using healthcare records from the general UK population and having access to such a large number of patient records were key to these important findings.
British Heart Foundation
Analysis of patient data to predict risk of breast cancer
FINDING OUT ABOUT RISK FACTORS ASSOCIATED WITH DISEASE Analysis of patient data to predict risk of breast cancer Scientists at The Institute of Cancer Research, London, carried out the world’s largest cohort study of breast cancer risk after treatment with radiotherapy for Hodgkin lymphoma.

Professor Tony Swerdlow and colleagues analysed data from 5,000 women who had been treated for Hodgkin lymphoma with radiotherapy between 1956 and 2003, looking at factors such as the age of the patient when they were treated and the type of treatments they received. The large number of women included in the study allowed researchers to make risk calculations more precisely than previously.
The study found that patients who were treated with radiotherapy around the age of puberty were at greater risk of breast cancer than those who were treated later in life. It points to the need to consider whether special measures should be undertaken to reduce the risk for girls undergoing radiotherapy at these ages.
Institute of Cancer Research
Guiding the use ofAnti-inflamatories of osteoarthritis
IMPROVING TREATMENTS Guiding the use of anti-inflammatories for osteoarthritis Research using primary care datasets has informed prescribing practice for non-steroidal anti-inflammatory drugs (NSAIDs) which are used by millions people living with osteoarthritis.

Osteoarthritis is the most common musculoskeletal condition in older people. A total of 8.75 million people have sought treatment for osteoarthritis in the UK. Pain is a key symptom of osteoarthritis and can become debilitating. There are no specific, tailored drugs for the treatment of osteoarthritis: the pain is frequently managed using non-steroidal anti-inflammatory drugs (NSAIDs), which people can use for long periods of time. Understanding the benefits and side effect profiles of NSAIDs in particular groups has been essential to improving the care of people with osteoarthritis. In some groups, for example people vulnerable to stomach ulcer, and older people there are higher risks.
Systematic reviews of primary care data have been used to define the sub-groups who are more vulnerable to side effects. The findings of this research has been used to develop NICE guidance for NSAID treatment, which is now included in clinical guidance. Linkage between primary care data, hospital datasets and mortality data has been essential to this work. Using healthcare records was the only way to achieve this: it enabled the full spectrum of patients to be studied, and data collected over long periods to be analysed.
 Arthritis Research UK
Improving the treatments of Bacterial meningitis
IMPROVING TREATMENTS Improving the treatment of bacterial meningitis in young babies Babies under a few months old are particularly vulnerable to meningitis as they are too young to be vaccinated and for many of the leading causes of meningitis in this age group, there is no vaccine available. Effective treatment is therefore particularly important.  A study funded by the Meningitis Research Foundation (MRF) has used patient records to understand how children under three months old should be treated.

From February 2010 until June 2013, Professor Paul Heath and his colleague Dr Ifeanyichukwu Okike, were funded by Meningitis Research Foundation (MRF) to investigate the causes of bacterial meningitis in children under 3 months old, and how they were being treated.
Access to electronic patient records was particularly important for this study as researchers needed to find out about how children were being treated and how children recovered once they got home. Bacterial meningitis was added to a list of infectious diseases collected by the British Paediatric Surveillance Unit (BPSU) orange card system, where clinicians indicate that they have seen a case at some time in the preceding month.  The research team used this data, along with information from national surveillance laboratories and meningitis charities to collate basic statistics about which bacteria were causing disease and how many children were affected. In order to investigate treatment, the researchers then contacted parents through their paediatricians to gain consent and access each child’s medical record.  They also took the opportunity to ask them about their experience. 
The results of the study are currently being analysed, but it is clear from preliminary data that there are still many improvements that can be made in the treatment of bacterial meningitis in babies. Some of the findings about symptoms are already being reflected in MRF’s literature for parents, and will be translated into treatment guidelines for doctors. The babies who took part in this study are also being followed up in further research, to find out what the longer term impacts are. Ultimately, the information and results from these studies will be vital in improving outcomes from bacterial meningitis in neonates by improving treatment, and helping to demonstrate the burden of disease and the potential impact of vaccination.
Meningitis Research Foundation
Improving osteoporosis treatments
Improving treatments Using the National Hip Fracture Database to improve hip fracture care Osteoporosis can cause bones to break easily. In the UK, one in two women and one in five men over 50 will break a bone. Hip fractures are one of the most serious consequences of osteoporosis; 30% of people die within a year and 10% die within one month of experiencing a hip fracture. The National Hip Fracture Database (NHFD) has had a powerful effect on hip fracture care.

Information has been gathered on a quarter of a million hip fracture cases since 2007. It shows us how hospitals are performing against best practice standards and show dramatic improvements by 2013:
  • Surgery within 48 hours rose from 75% to 86%
  • Falls assessments prior to discharge rose from 44% to 94%
  • Discharged on bone protecting treatments rose from 57% to 69%
Today, 95% of all cases are recorded. Access to information about the treatment and care people have received has been vital to improving standards.  Hospitals have been able to compare their performance with others and have taken action to improve patient care and outcomes.  Pilot work is underway to replicate the achievement of NHFD in an audit of all fragility fractures. However its success is reliant on access to patient information from both GP practices and hospital settings.
National Osteoporosis Society
Cystic fibrosis registry
IMPROVING TREATMENTS Cystic Fibrosis Registry The UK Cystic Fibrosis (CF) Registry has over 10,000 people with CF registered.  Information from the registry is used to assist in improving care and standards for people with CF by producing national reports on clinical outcomes and is now key in ensuring patients with Cystic Fibrosis receive “gold” standard care.

The registry has data from 59 regional CF centres and 90 associated network clinics and in 2012 had 90% complete data. Data is also used for the current Cystic Fibrosis Trust / British Thoracic Society Peer Review process; producing reports for Phase IV pharmacovigilance studies ensuring safety of newly licensed medications for CF;  producing data for research grants to improve standards of care and for the production of bandings for the department of Health national mandatory tariff of CF disease severity.  The registry is the frontrunner in providing this work and from the annual data recorded by the care centres/clinics the 5 severity bands of CF can be calculated.
Cystic Fibrosis Trust
Improving end-of-life care
IMPROVING TREATMENTS Improving end-of-life care for patients, carers and families Marie Curie Cancer Care has funded several research projects which make use of existing patient data to understand how to provide immediate and long-term benefits to people with terminal illnesses.

Researchers at the University of York are looking at variation in the care of patients with bowel and blood cancers at the end of life, using the National Cancer Data Repository and NHS data. This research is investigating patterns of end of life care, including levels of service and how they can impact on the place where a person is cared for, and where they die.
Dr Elizabeth Sampson is researching the demographic characteristics, health outcomes and health service use of people who are living with someone who has cancer, chronic obstructive pulmonary disease or dementia. This research relies on the UK health improvement network database which includes over 9 million patients and anonymously records the characteristics, medical history, prescriptions and health service use of patients. This research on the health and wellbeing of people who are caring for a dying person will allow us to better support and help them.
Marie Curie Cancer Care
Reviewing the management of chronic kidney disease
IMPROVING TREATMENTS Reviewing the management of chronic kidney disease Chronic Kidney Disease (CKD) is a condition where the kidneys gradually deteriorate. In the most severe cases they stop working altogether and patients have to undergo dialysis or, if able, a kidney transplant. This is a serious and growing problem.  If identified early, CKD can be slowed down or even stopped. Kidney Research UK wanted to evaluate how we could improve how this disease is managed in primary care. To do this we needed a very large amount of patient data.

Our study team analysed data collected from over 900,000 patients who were registered with 130 GP practices. They found important differences between methods used by GPs and their teams to learn about and manage CKD and identified areas to improve treatment. In fact, Kidney Research UK, working with experts and practitioners, has already moved ahead with piloting new combinations of techniques to improve CKD management.
Kidney Research UK
Ovarian cancer
IMPROVING DIAGNOSIS UK Collaborative Trial of Ovarian Cancer Screening This huge trial (funded by Cancer Research UK and others) is designed to see whether a national screening programme for ovarian cancer could be used to detect cancers earlier, and help to reduce the number of women dying from the disease. Patient data was used to recruit more than 200,000 women to this trial. We’ll have to wait until 2015, when the trial has finished, before we know whether screening can actually help reduce the death toll of ovarian cancer – which currently claims over 4,000 lives each year, but early results are looking promising.

To read more, have a look at the UKCTOCS website.
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