Arthritis Research UK: Using health information to improve primary care services

Lower back pain is a major health problem in the UK, affecting four out of five people at some point in their lifetime. Back pain is estimated to make up 20% of total health spend in the UK and was responsible for almost 10 million lost workdays in 2014.

There are many treatments available for back pain, but previously it was unclear which patients would benefit most from which treatment. To address this problem Arthritis Research UK funded a team of researchers to develop the STarT Back Screening Tool (a short questionnaire) to screen primary care patients with low back pain for indicators that are relevant to treatment choice.  The information gathered by the tool helps primary care clinicians to group patients into group of low, medium or high-risk of pain. By being able to categorise patients into these three groups, clinicians are then able to target interventions to each sub-group of patients to help improve outcome.

Research revealed significant improvements in symptoms, a 50% reduction in days off work, and cost savings to the NHS of £34 per patient when using the targeted approach compared to usual care.

The tool is now recommended by the Royal College of General Practitioners and the British Pain Society and has been adopted by more than 20 healthcare organisations in the UK. Further afield, over 85 clinical services worldwide are using the tool to categorise patients and inform them of the probable progression of their pain.

“Feedback from this activity shows that adopting the STarT Back approach is having a substantial beneficial impact where it is being implemented, making a big difference to patients, with reduced access times to clinical services, high patient satisfaction and reduced clinical variation.” Researcher perspective

Yorkshire Cancer Research: Using health information to improve patient outcomes

Bowel cancer is the third most common type of cancer in England, with 4,668 cases diagnosed in Yorkshire in 2010. The rate of diagnosis of bowel cancer has been rising across the Yorkshire and Humber region and deaths from the disease have been falling due to a better understanding of the disease through research.

In an initiative to help to improve bowel cancer care, researchers funded by Yorkshire Cancer Research are linking routine NHS datasets (such as Hospital Episode Statistics, cancer registrations, screening, radiotherapy and chemotherapy), patient reported outcomes and diagnostic outcomes of bowel cancer patients across Yorkshire to assess the quality of hospital services and bowel cancer outcomes across the region.

This information will be used by a team of healthcare professionals caring for bowel cancer patients to identify areas of care that require improvement and to start education initiatives to advance patient care. The programme aims to achieve a 10-15% improvement in patient outcomes, preventing around 120 to 150 deaths from bowel cancer each year. National roll-out could lead to even greater improvements in bowel cancer survival.

“Access to a wide range of health information and outcomes allows us to identify excellent and poor practice, design educational initiatives and improve overall care for bowel cancer patients. This saves lives and prevents unnecessary suffering.” Researcher Perspective

British Heart Foundation: Using health information to inform NICE guidelines

The UK’s largest ethnic minority groups, people of South Asian and African Caribbean origin, experience markedly different rates of heart disease and diabetes to people of European descent.

The Wellcome Trust and BHF-funded Southall And Brent REvisited (SABRE) study was set up to investigate this link. In total, people of 5000 European, South Asian and African Caribbean origin living in North-West London, were recruited to participate in the study in 1988. After 20 years the majority of participants received a review of their medical records and hospital episode statistics, enabling researchers to establish key diabetes, heart or stroke-related events.

The study showed that people of South Asian origin experienced more heart disease than people of European origin, and people of African Caribbean origin experience less than both ethnic groups. The South Asian and African Caribbean ethnic groups had greater stroke rates than people of European origin, possibly explained by their much higher prevalence of diabetes.  In fact, people of South Asian and African Caribbean origin had three times more diabetes than people of European origin, which SABRE indicated may be due to ethnic differences in body composition. Additionally, people from these groups develop diabetes at a lower BMI than Europeans, a finding that informed NICE guidelines on acceptable BMI cut-off points for each ethnic group. Findings will continue to contribute to tackling health inequalities in the UK.

“Access to data in study participants’ medical records has been essential for our research. It has allowed us to look at patterns in health over a period of almost 30 years and identify factors that appear to increase an individual’s risk of developing heart disease, diabetes and stroke. Ultimately, this will help us to improve the prevention, treatment and diagnosis of these diseases, particularly for people at higher risk.” Researcher perspective

Cancer Research UK: Using health information to model future demand on services

There are around 280,000 new cancer diagnoses in England every year and this is set to increase substantially. Cancer survival has increased, but the NHS in England is under considerable pressure as the ’62 day wait’ target (for people to start their treatment after they’ve been referred for suspected cancer) has been breached for over two years.

As part of Cancer Research UK’s research, they used anonymised, aggregated health information from many sources including waiting times data, diagnostic imaging data and hospital episode statistics to understand current activity; model future demand for diagnostic tests and understand how to meet it.

This report fed into the cancer strategy for England and was used as the basis for a Cancer Research UK campaign ‘Test Cancer Sooner’, which gathered 24,600 signatures. In September 2015, the Department of Health announced up to £300 million more per year by 2020 for diagnostics, and Health Education England committed to training 200 extra endoscopists. Cancer Research UK are now waiting to hear more about how this funding will be spent in the NHS.

“Health services research like this allows us to understand the problems facing people affected by cancer – and importantly, how they could be addressed.  This enables us to make targeted, evidence-based recommendations to the Government and the NHS, which ultimately helps us achieve our goal of beating cancer sooner.” Policy perspective

Asthma UK: Using health information to manage chronic conditions

5.4 million people in the UK are currently receiving treatment for asthma. The UK has some of the highest prevalence rates in Western Europe and on average 3 people a day die from asthma. Despite its prevalence, 1 in 2 asthma patients do not have their asthma well controlled.

In 2015, Asthma UK began working with a range of partners from across Europe on a three-year study to develop a novel sensor-based inhaler, myAirCoach, which connects to a patients’ smart device and monitors a range of physiological, behavioural and environmental factors. It aims to help asthma patients to self-manage and increase their awareness of their clinical and environmental state. It will also create a new and more comprehensive dataset of the biological state of people’s asthma on a day-to-day basis. This can then be examined by researchers who are aiming to discover whether asthma exacerbations can be predicted and treated at an earlier stage. The project will build evidence about the potential for mobile Health to manage asthma and other long-term conditions.

“MyAirCoach is a ground-breaking project that will pave the way for more effective management of asthma based on real-time data from the patient and their environment. The use of a wide array of information will help to predict a worsening in asthma symptoms, such that treatment can be subsequently adjusted to avert a life-threatening asthma attack.” Researcher perspective

Alzheimer’s Research UK: Using health information to help with early detection

Dementia affects around 850,000 people in the UK and there are currently no treatments that can slow or stop the diseases that cause it. Studying the earliest changes in diseases like Alzheimer’s will help researchers identify those who could benefit most from new treatments, and design better clinical trials to test them.

Alzheimer’s Research UK is supporting a University College London study involving members of the MRC National Survey of Health and Development – the UK’s longest running from-birth study. These volunteers have contributed to medical research their whole lives, providing decades of detailed medical and life history.

At the age of 70, 500 of the volunteers are now undergoing state-of-the-art brain imaging, memory and thinking assessments and providing blood, urine and DNA samples. A multidisciplinary team of researchers is using this information to learn more about the earliest changes in diseases like Alzheimer’s and the factors that combine to influence a person’s risk of dementia.

“My main feelings about being part of the Survey are curiosity and a bit of pride. If, in our backgrounds, there is a ‘why’ for dementia, a reason some of us develop the condition and others don’t, we have to find it.” Patient perspective

Bloodwise: Using health information to improve diagnosis and treatment

Blood cancer is the UK’s fifth most commonly diagnosed cancer and the third biggest cancer killer. Bloodwise funds the Haematological Malignancy Research Network (HMRN), a collaboration between epidemiologists, a centralised diagnostic service and 14 hospitals that are capturing detailed data of treatments, responses and outcomes to clinical trial standards from every blood cancer patient in Yorkshire and Humberside.

HMRN collects tissue samples, demographic data and self-reported information from patients, and follows patients from diagnosis for the rest of their lives.

Recorded data from 20,000 patients since 2004 and it has already offered invaluable insights into routes to diagnosis, gaps and inaccuracies in GP guidelines on symptoms, variations in treatment response and a socio-economic effect on survival. The findings are helping to inform clinical practice and research, improving treatment for blood cancer patients across the UK and beyond.

“HMRN would not be possible without sharing health information. Insights gained are helping to spark new avenues of research and have the potential to influence the design and evaluation of new treatments. It could represent a paradigm for the management of other cancers and serious diseases.” Researcher perspective