The Astrodem study uses techniques developed for studying galaxies to analyse GP data, looking for the early warning signs of dementia. It is hoped that this innovative approach will lead to better tools to help GPs diagnose dementia earlier and offer better support to their patients. Why is this work needed? Diagnosing dementia as soon as possible allows a person to maximise their quality of life, benefit from treatments and plan for the future. However, currently, only 50-60% of people with dementia receive a diagnosis. What will happen? Researchers will analyse data from 96,000 GP records to identify common, early indicators of dementia, using the same statistical techniques that have been developed to catalogue galaxies. They will use a broad range of data from GP records, such as the number of appointments a patient has had, or whether they attended with a family member. These details will be combined with other clinical information known to predict dementia, and could provide a wide range of indicators to help GPs identify those at high risk of developing the condition. What are the benefits likely to be? This study is currently still in progress. This research is intended to develop a tool that identifies and ranks dementia indicators, which can then be added to the computer software GPs use when diagnosing their patients. It would alert GPs to any potential early signs of dementia when they appear and prompt timely, sensitive conversations about the condition. This could lead to improved rates of early diagnosis, allowing better support and treatment for people with, and at risk of, dementia. What type of data is involved? This research uses GP data from the Clinical Practice Research Datalink (CPRD). What is the legal basis for accessing the data? The data is de-personalised before being accessed by the researchers. Who is funding and collaborating on this work? This research is being carried out at the University of Sussex and funded by the Wellcome Trust. Nine months of preliminary data collection was funded by the University of Sussex’s STFC Impact Acceleration Account. The project has also been supported by the Sussex Research Development Fund. Where can I go for more information? Medicine meets astrophysics to help early dementia diagnosis

Around 2 in every 1,000 children in the UK have severe vision impairment in both eyes. Studies on national data showed for the first time that risk for children depends on their ethnicity, birthweight, levels of deprivation and other early life factors. The findings have changed the way the NHS screens for childhood visual impairments and became the international standard for describing the burden of childhood vision impairment across the world.   Why was the work needed?   Children with severe vision impairments from birth have lifelong impacts on all aspects of daily life, including school and family life, employment and social activities. Studies looking at national data were needed to find out how many children had vision impairment due to causes like congenital cataracts, amblyopia (which is sometimes called a squint or lazy eye), paediatric glaucoma, and inherited disorders. These studies also assessed the effectiveness and safety of treatments. What happened? Researchers collected information about children with vision problems and their treatment from the eye specialists (ophthalmologists) and other doctors caring for them. The studies showed for the first time that there are major differences in the risk of vision problems for children depending on their levels of deprivation, ethnicity, birthweight and other factors in early life. It also found that children with vision problems today often have other disabilities and more complex needs than they did in the past. What were the benefits? The studies are unique in describing how many and which children are affected by vision impairment and blindness. It has become the international standard for describing the burden of childhood vision impairment across the world. The NHS policy on universal childhood vision screening has been updated based on findings from these studies. The Royal College of Ophthalmologists has used the information to plan services for children. The research has provided a baseline for more work to understand whether new treatments are safe and effective. What type of data was involved? The studies used the British Paediatric Surveillance Unit (BPSU) and British Ophthalmological Surveillance Unit (BOSU) to identify children to include in the studies. Because these are rare diseases, it is very important to collect data on every child that has serious vision problems and it was necessary to get this data directly from specialists and hospital doctors. Researchers collected clinical information about each case from hospital records from doctors who looked after children with vision impairments. While data about individual children was de-personalised, the data was not completely anonymous as the researchers needed to link information on the same child being reported by more than one doctor.  What was the legal basis for accessing the data? Ethical approval for this study was granted by the London Bloomsbury Research Ethics Committee. Permission was also granted to collect patient identifiable information under a Section 251 approval of the NHS Act 2006. Section 251 allows researchers to use identifiable data when it is not possible to get consent from every patient. All patients can opt out of their data being used. Who funded and collaborated on this work? The study was funded by Fight for Sight. Researchers at UCL Great Ormond Street Institute of Child Health worked in collaboration with the Royal National Institute of Blind People. Where can I go for more information? Impact of the Childhood Visual Impairment and Blindness Study The study is now being extended to include children with a much wider range of vision problems: RCPCH: British Childhood Visual Impairment and Blindness Study

The STarT Back screening tool uses patient data to help doctors work out the chances of someone with back pain going on to develop a long term disability. By supporting doctors to find those most at risk, treatment can be targeted to where it is most needed, benefitting those with back pain and saving the NHS money. Why was this work needed? Lower back pain is estimated to affect 4 out of 5 people at some point in their lives, but it has been unclear how doctors should target treatment so that people get the most benefit. What happened? STarT Back is a screening tool which helps doctors to group people with back pain according to their risk of developing a long term disability. Doctors ask nine questions about current symptoms and then use the answers to categorise the person as low, medium or high risk and then tailor their treatment accordingly. What were the benefits? The tool was originally developed as part of a randomised control trial showing that it could lead to improvements in symptoms, reduction in days off work and overall savings to the NHS. When doctors are treating conditions which are very common, such as back pain, using individual data in this way helps them to identify especially severe cases and target treatment accordingly. What type of data was involved? Patients are asked nine questions about their symptoms and the answers are used to help their doctor identify their risk category. What was the legal basis for accessing the data? The data is used in individual care as part of a consultation between a patient and their doctor. Who funded and collaborated on this work? Arthritis Research UK funded the trial which developed this tool, which was conducted at Keele University. Where can I go for more information? What is the STarT Back Screening Tool? Comparison of stratified primary care management for low back pain with current best practice (STarT Back): a randomised controlled trial Using health information to improve primary care services: Arthritis Research UK

Cancer treatment for children and young adults can be delivered at a local hospital or at a principal treatment centre. This project investigated whether or not there was a difference in the outcome of childhood cancers depending on where someone received their treatment. The analysis demonstrated that where the treatment is given does not change a child’s chances of surviving cancer. Apart from ensuring that people get the best care regardless of location, this also allows healthcare professionals to reassure young adults, and the parents of young children, with cancer that they will get the best treatment wherever they receive it.   Why was this work needed?   When children are being treated for cancer, their treatment is organised at a principal treatment centre, which specialises in treating specific cancers and age groups, but they can also receive some of their treatment at their local hospital. The way in which the treatment is divided between the two can vary dramatically. This variation can cause patients and their carers to worry about whether the location where they receive their treatment will affect their chance of survival.   What happened?   This analysis compared the survival rates of children with cancer according to how their principal treatment centre tended to divide care between local hospitals and principal treatment centres. It found that the survival rates were the same, regardless of the locations of the treatment.   What were the benefits?   This analysis suggests that children consistently have the same survival rates, irrespective of how much of their treatment is delivered at a principal treatment centre. This helps to reassure children with cancer, and their parents, that their chances of survival are not influenced by how their treatment delivery is shared with local hospitals. It also allows care planners to be confident that where the treatment is delivered is not having a negative impact on children and young adults with cancer.   What type of data was involved?   All paediatric oncology principal treatment centres were surveyed on how much they shared cancer care with local hospitals between 1997 and 2009. This was then compared with the numbers of new diagnoses and five year survival rates.   What was the legal basis for accessing the data?   This study involved anonymous data.   Who funded and collaborated on this work?   This work was carried out by the National Cancer Intelligence Network (NCIN), which has since become part of the National Cancer Registration and Analysis Service (NCRAS).   Where can I go for more information? Shared Care and Survival – CTYA SSCRG

By linking three separate sets of data, this research showed that it is common for people to stop taking a recommended anti-clotting drug once they are discharged from hospital after a heart attack. There is also evidence that stopping taking the drug is associated with an increased rate of death, although this research did not prove a causal link between the two. Why was this work needed? Clopidogrel is an anti-clotting drug which is recommended for people who have recently had a heart attack. However, it is difficult to know whether people continue to take this for the recommended length of time after they are discharged from hospital and, if they choose to stop taking it, what happens to them. What happened? This research linked together three sets of data to try to understand more about what happens to people once they are discharged from hospital, after receiving treatment for a heart attack. It linked records of someone’s treatment and prescriptions in hospital with GP data showing what happened to them after discharge. They then linked these to national data recording individual deaths. What were the benefits? The research demonstrated that stopping taking clopidogrel is common, and that this is associated with an increased number of heart attacks and death. However, while the research demonstrated an association, it could not prove a causal link. Future research will continue to investigate this. What type of data was involved? This research linked data from four sources: Clinical Practice Research Datalink (CPRD), Hospital Episode Statistics (HES) Admitted Patient Care, Office for National Statistics (ONS) mortality and Myocardial Ischaemia National Audit Project (MINAP). What was the legal basis for accessing the data? The Health and Social Care Information Centre (now NHS Digital) carried out the linkage. After this, the records were de-personalised before being used by the researchers. Who funded and collaborated on this work? This study was funded by AstraZeneca UK Ltd. Researchers from CPRD, representatives from the MINAP data custodians, and cardiovascular healthcare professionals collaborated on this research. Where can I go for more information? Clopidogrel discontinuation after acute coronary syndromes: frequency, predictors and associations with death and myocardial infarction--a hospital registry-primary care linked cohort (MINAP-GPRD)

The Randomised Evaluation of COVid-19 thERapY (RECOVERY) Trial was set up to identify effective treatments that improve outcomes for people in hospital with suspected or confirmed Covid-19. Trial participants receive either standard care, or at least one of the treatments under investigation. Researchers use routine patient data to assess whether the treatments have an impact on the overall number of patients who survive Covid-19, besides other outcomes such as the length of hospital stay. The trial led to the discovery that the steroid dexamethasone reduces death in ventilated patients by a third, and as of January 2021 is still investigating a variety of other treatments. Why did this work happen? When the coronavirus pandemic began, there were no specific treatments available for people severely affected by Covid-19. There was an urgent need for information about whether existing or new drug therapies were effective against the disease. Normally, a large clinical trial would take many months to set up, but RECOVERY was launched in just nine days and recruited over 10,000 patients across the UK within two months. The trial is taking place at 177 NHS hospital sites across the UK and is open to all patients hospitalised with Covid-19. As of 31 January 2021, over 31,000 participants had been recruited to the trial. How was data used? When a patient joins the trial, the local research team completes a simple form with crucial information such as which treatments the patient is receiving (for example, if they’re being given oxygen). With the patient’s consent, the routine data team then links each recruited patient with their record in the database held by the central NHS data custodian - NHS Digital for England, the SAIL Databank for Wales, Public Health Scotland and the National Records of Scotland. Linkage with data from other organisations such as the UK Renal Registry and the Intensive Care National Audit and Research Centre adds additional information. There are technical and operational safeguards in place to protect data used in the trial. They include encryption and password protection, limiting the number of people who have access to the database and using unique reference numbers to identify participants rather than names wherever possible. What were the benefits? Within just a few months, the trial led to the discovery that the steroid dexamethasone reduces death in ventilated patients by a third. The steroid is now being used to treat people hospitalised with Covid-19 in the NHS and internationally. The trial has also found that four treatments (lopinavir-ritonavir, hydroxychloroquine, azithromycin and convalescent plasma) delivered no clinical benefit, allowing healthcare providers to focus resources away from these. The trial is continuing to investigate several other treatments, which as of January 2021 includes tocilizumab (an anti-inflammatory), Regeneron’s monoclonal antibody treatment, aspirin and colchicine (an anti-inflammatory treatment used for gout). Who funded and collaborated on this work? The RECOVERY trial is conducted by the registered clinical trials units with the Nuffield Department of Population Health in partnership with the Nuffield Department of Medicine, both at the University of Oxford. The trial is supported by a grant to the University of Oxford from UK Research and Innovation/National Institute for Health Research (NIHR) and by core funding provided by NIHR Oxford Biomedical Research Centre, Wellcome, the Bill and Melinda Gates Foundation, the Foreign, Commonwealth & Development Office, Health Data Research UK, the Medical Research Council Population Health Research Unit, and NIHR Clinical Trials Unit Support Funding. The trial involves many thousands of doctors, nurses, pharmacists, and research administrators at 177 hospitals across the whole of the UK, supported by staff at the NIHR Clinical Research Network, NHS DigiTrials, Public Health England, Department of Health & Social Care, the Intensive Care National Audit & Research Centre, Public Health Scotland, the Secure Anonymised Information Linkage at the University of Swansea, and the NHS in England, Scotland, Wales and Northern Ireland. Where can I go for more information? https://www.recoverytrial.net/

Patient data is critical to establishing the risks and benefits of treatments. In this case, there is some evidence that a drug prescribed for diabetes, pioglitazone, leads to an increased risk of bladder cancer. At the moment, the nature of this link is unclear, so further research is critical for patients and clinicians alike.   Why was this work needed?   Pioglitazone is a drug commonly used by people with diabetes to lower their blood sugar. In 2011, an American study suggested that pioglitazone was linked with a significant increase in rates of bladder cancer. Subsequent research has tried to confirm whether or not pioglitazone really does raise the risk of bladder cancer but the situation is still unclear.   What happened?   Two recent studies have looked at the potential link between pioglitazone and bladder cancer. In 2015, researchers used prescription data, cancer and mortality rates from people with Type 2 diabetes across six different regions from four different countries (three of the groups came from the UK) and did not find any evidence that pioglitazone increased the risk of bladder cancer. In 2016, a different study looked at nearly 150,000 people who were treated with antidiabetic drugs between 2000 and 2013, and followed up until 2014. This work did identify an increased risk of bladder cancer with the use of pioglitazone. What were the benefits? Establishing the risks and benefits of treatments can take time – it is a challenging and complex process. More research is clearly needed to establish whether or not there really is a link between pioglitazone and bladder cancer, and the extent of this potential risk. High quality data will be fundamental to this ongoing research. People with diabetes who may be suitable for pioglitazone should have conversations with their clinicians about weighing up the potential risks and benefits of this drug to them as individuals. What type of data was involved? Both pieces of research used the Clinical Practice Research Datalink (CPRD). In addition to using CPRD, the 2015 study also looked at data from two specific UK population groups, one from Scotland and one from Manchester, as well as data from Finland, British Columbia and Rotterdam. The Scottish dataset was drawn from a linkage between the data held in the Scottish Care Information-Diabetes Collaboration (a Scotland-wide Type 2 diabetes database) and cancer registry data which is held by the Information Services Division of NHS Scotland. The Manchester data was drawn from the Salford Integrated Record system. What was the legal basis for accessing the data? CPRD is de-personalised before researchers are given access to it. Who funded and collaborated on this work? The 2015 study was funded by the European Foundation for the Study of Diabetes. The 2016 study was funded by the Canadian Institutes of Health Research. Where can I go for more information? Pioglitazone and bladder cancer risk: a multipopulation pooled, cumulative exposure analysis Pioglitazone use and risk of bladder cancer: population based cohort study