Ben Hargreaves examines why a research project in the UK could provide key information to develop treatments for many of the most important diseases affecting society. We also hope to find clues about the risk factors involved in the development of the most difficult to understand diseases.
The importance of health data to the life sciences industry is growing as rapidly as the technology to capture it is advancing. A few decades ago, collecting genetic data on the scale of the 100,000 Genome Project would have been unthinkable – it wasn’t until 2003 that the entire human genome was mapped. In 2018, the 100,000 genomes project completed its data collection from 100,000 participants and the study of this collected information is still ongoing. According to Genomics England, the project saw 18.5% of data turn into actionable results, and it played a direct role in diagnosing study participants with health conditions.
The promise of this study and the broader field of data analytics has led to a number of different approaches to harnessing the power of data collection to improve health outcomes in society. Genetic testing companies, such as 23andMe, provide a service to check consumers’ genetic backgrounds, while using the collected data to collaborate with pharmaceutical companies on potential treatments. The power of AI is also being harnessed to sift through vast amounts of data to determine potential areas of treatment or discover new uses for old compounds.
Another approach is similar to that employed by the 100,000 Genome Project: asking volunteers to provide their health data, which allows participants to be provided with personalized health reports and also allows discoveries to be made from the data collected. . This is how Britain’s Our Future Health research program aims to provide a breakthrough in healthcare and medicine. However, the scale goes well beyond 100,000 genomes and instead seeks to recruit five million adult volunteers.
the project’s objectives
People who choose to participate in the Our Future Health program will provide more information than their genetic data – they will also detail their current health status and lifestyle, as well as their health records. Volunteer data will be anonymized and stored in “trusted research environments,” which will operate under security criteria. The initiative is run by the UK’s National Health Service (NHS), and those involved say the program could provide “a more comprehensive picture of health and wellbeing that could be relevant to understanding what changes people’s risk of illness”.
In particular, the hopes are that the information provided by the volunteers will enable researchers to develop new ways to prevent, detect and treat diseases and health conditions, such as cancer, Alzheimer’s disease, heart disease, arthritis, diabetes and stroke. Particular emphasis will be placed on identifying diseases before they become symptomatic, which is particularly important in areas where early diagnosis can be difficult, such as Alzheimer’s disease or multiple sclerosis.
The long-term aim of the project is to tackle the ‘increasing burden of disease’ in the UK, as those involved have pointed to the statistic that 59% of people aged 65 or over suffer from at least least two chronic illnesses or disabilities. It is estimated that this will reach 70% by 2035. The research program was officially launched at the end of October 2022, and aims to build an information resource of five million individuals by 2025.
The research project, which is expected to be the largest ever on health in the UK, has successfully secured £79million in funding from UK Research and Innovation. It is also on track to raise additional funding of around £160million from disease-related charities and companies working in the life sciences industry. In early 2022, Our Future Health was able to announce £100 million in funding from select pharmaceutical companies including Amgen, AstraZeneca, GlaxoSmithKline, Johnson & Johnson, MSD and Roche, among others.
In addition to providing financial support, the pharmaceutical companies involved will work alongside Our Future Health to contribute their expertise in the discovery and development of methods for the prevention, early detection and treatment of disease. In return, the resources and information collected will be made available to manufacturers to develop new treatments and diagnostics. For industry, the use of data has provided many breakthroughs in recent years, from the ability to recruit the right patients to complete clinical trials, to the ability to target patients with particular genes.
Hope for the sick
The potential for collecting such a wealth of information goes beyond creating new treatments and instead creates the potential for better understanding diseases and how they appear in individuals. Support for Our Health Future from leading health charities makes sense when you realize how misunderstood many important diseases are.
An example is the multiple sclerosis (MS) and health charity, the MS Society, which is actively involved in the project. Jacqui-Ann Hanley, acting head of research at the MS Society, told pharmaphorum that the symptoms of the disorders “can come and go and change over time”, as well as being varied and different from individual to individual. other. The disease is so unpredictable because it affects the nerves of the body, with the immune system attacking nerves in the brain or spinal cord, which affects many different bodily functions.
“This makes early diagnosis of MS difficult. With the development of new technologies and a better understanding of MS, diagnosis of the disease has improved considerably in recent years, but there is still no single test. Most people are diagnosed with a series of tests,” Hanley described. This is where the longitudinal aspect of the Our Future Health study could provide breakthroughs – as the research will take place over a number of years and with a large number of people providing information, a better understanding of what exposes people at risk of MS could be found. . It could also provide information on how it could be avoided.
Breakthroughs to come
The MS Society has already proven the effectiveness of such long-term studies, with its own UK MS Registry collecting data on people with MS and linking it to their medical records and NHS data. In this way, the charity was able to understand that when people with MS quit smoking, the rate at which their disability worsens slows down, similar to people who have never smoked. Although poor health has long been linked to smoking, the ability to point to data and show a clear link to disease progression could encourage people with MS to quit smoking.
“We know that a range of factors combine to cause MS, with growing evidence of a major role for Epstein-Barr virus. But to really understand what puts people at risk for MS – and more importantly how we can prevent it – we need to study people before they develop the disease,” Hanley concluded. This ability to identify patterns among large groups of people is the underlying premise of Our Health Future. It is likely, just as with the 100,000 Genomes Project, that we will hear about the breakthrough made possible by this approach in the years to come.
The QuDoS in MS – Recognizing Quality in the Delivery of Services in Multiple Sclerosis – recognition program is a pharmaphorum initiative supported by the MS Trust and sponsored by a number of pharmaceutical companies.
Open for applications again in 2022, QuDoS in MS emphasizes innovation and excellence in MS care management and service delivery, recognizing the valuable contribution of individuals and teams to the improving the quality of life and experience of care for people with MS.
Entry is open to: MS nurses; other nurses working in MS; allied health professionals, including physiotherapists and occupational therapists; neurologists – registrars and specialist consultants; pharmacists; GPS; district nurses, nurse practitioners, community matrons; healthcare professionals working in the community, a hospital or primary care facility, a nursing or nursing home, or a rehabilitation or palliative care facility; and multidisciplinary teams.
More information can be found here.
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