Mapping the future

By - World Healthcare Journal

Mapping the future

The UK has long been recognised for its strength in early-stage clinical research, with world-class universities and a history of cross-border collaborations involving industry and academia. Alongside this, the UK has a rich health data ecosystem with unique longitudinal datasets, overlaid with the latest advances in genomic testing.

There is also growing strength in real-world evidence, with the UK leading the way in collecting and using this data for approval and reimbursement of new medicines. In addition, there is a history of leading academic institutions and supportive governments, willing to work in partnership with industry and researchers to create an environment in which life sciences can flourish.

“The life sciences sector is unquestionably one of the UK’s most important industries with some world-leading strengths, including its university sector, the untapped potential of NHS datasets, strength in early-stage and translational research and a leading edge in emerging fields such as genomics,” says Tim Sheppard, Senior Vice President and General Manager for IQVIA’s Northern Europe arm.

As a world leader in using data, technology, advanced analytics and expertise IQVIA enables its customers to create more modern and efficient healthcare systems. The company now has four prestigious UK prime sites conducting cutting edge clinical trials, and it views its partnership with the UK as intrinsic to its future success.

Healthcare data

The UK has some of the richest healthcare and research data assets in the world. The universal health system provides a whole population perspective and the NHS number provides a unique patient ID. There is national coverage of hospital inpatient administrative data from the Hospital Episode Statistics (HES), and a well-developed ecosystem of registries. In primary care, there are large-scale primary care electronic medical records for research, as well as community prescribing and dispensing data. The UK is also leading the world with unique data assets such as those from Genomics England. Some assets are well organised, such as the Clinical Practice Research Database (CPRD) and UK Biobank, although currently only a fraction of NHS and research data is currently accessible at a national level and is used for research and innovation.

The National Institute for Health Research (NIHR) Clinical Research Network (CRN) provides the infrastructure to support clinical trials across the NHS in England. It liaises with leading life sciences companies to maximise the UK’s research potential and as CEO Jonathan Sheffield says, “The NHS health data ecosystem is internationally the richest resource for the data revolution which will drive faster diagnosis and personalised treatments for patients. ”

This is achieved through vibrant relationships between universities and life sciences companies with a 20 per cent increase in adult participants in 2017/18 and an 84 per cent increase in children’s clinical trial participants.

Health data research hubs for cancer

With healthcare data for 65m people, the UK has the capacity to curate and analyse this through Health Data Research UK (HDR-UK) research hubs to enable cutting edge research for health discoveries, giving UK patients faster access to pioneering treatments.

Health Data Research Hubs for Cancer (DATA-CAN), the national cancer health data research hub, is one of seven health data research hubs announced by HDR-UK in September 2019, designed to transform the accessibility of high-quality cancer data across the UK. IQVIA has collaborated with five NHS organisations in DATA-CAN to provide its Oncology Data Network (ODN), a scalable, 48-hour latency non-identified set of cancer clinical phenotype and outcomes data while maintaining strict controls around data privacy and consent from primary clinical systems.

This collaboration is built on rigorous patient privacy and data protection governance, with the goal of improving clinical outcomes for the 500,000 people in the UK diagnosed with cancer every year. Improving outcomes will directly impact half of the UK population who will face a cancer diagnosis at some point in their lifetime and could potentially contribute to saving 30,000 lives a year.

Challenges of the UK environment

Despite the UK’s strong history, excellent infrastructure and government commitment, there are some areas that require improvement surrounding the UK as a place to conduct healthcare research. Data sources are fragmented, and not all hospital records are electronic. Regardless of some initial progress on interoperability, open standards and data access, implementation has been slow, and data sources are often siloed and rarely linked.

Patient access to innovative treatments also remains a challenge in the UK and, despite being the third highest country in the EU for introducing medicines, the uptake of those innovations is the lowest in Europe with only 18 British patients accessing a new treatment within the first year for every 100 German patients. As a result, the standard of care often falls behind comparable European countries, making it harder to place trials in the UK. The Government recognises this and is actively working to improve the system.

Identifying patients quicker through AI

Idiopathic Cardiovascular Disease is a rare condition. The symptoms are non-specific and there is poor awareness of the disease outside of specialist centres. Patients have very high levels of activity prediagnosis: on average a patient has 25 hospital events in the three years prior to diagnosis. It can, therefore, be challenging to identify patients early and they are often diagnosed too late in the course of a disease.

IQVIA utilised the HES database to build a data-driven AI algorithm to enable better detection of these hard-to-find patients. This utilised nearly 700 individual prioritised clinical codes to define patients’ medical history from EMR data. The AI algorithm was applied to the frequency, timings and number of unique events defined by these codes to predict patients earlier in the disease course. As a result of the success of the algorithm, a follow-on pilot has been established to explore the deployment of a clinical support tool at clinical sites.

This case study demonstrates it is possible to use AI analysis of medical history data to reveal undiagnosed patients and detect patients earlier in the course of a disease.

Better clinical trial site selection in Idiopathic Pulmonary Fibrosis

Good understanding and access to datasets allow data to be used to improve research and development. Idiopathic Pulmonary Fibrosis is a rare condition in which the lungs become scarred and breathing becomes increasingly difficult. Identifying suitable sites for a clinical trial is challenging, due to the rare nature of the illness. By using data-driven insights and data interrogation, it was possible to map the high concentrations of patients, and target centres nearby. As a result of this tailored approach, there was a 20 per cent improvement in site engagement with the study, rising from 47.6 per cent using traditional methods of site identification to 57.1 per cent with this data-driven approach.

As a result, more patients with this rare condition, many from deprived areas, were able to access this study, benefiting their own health and potentially providing insight into treatment options. The UK is the first country in the world to sequence 100,000 genomes and is aiming to reach 5m. Genomics has the potential to transform patient outcomes. By mapping a person’s DNA and comparing it to a database of DNA maps it is possible to identify the genes that cause disease, facilitating future diagnoses and enabling the design of more targeted treatments. Technology is moving so quickly that while it once took 13 years and £2bn to sequence a genome, it now takes two days and costs £1000. Genomics will allow clinicians to predict who is likely to develop a disease and how an individual will respond to treatments.

From 2019, the NHS is offering whole-genome analysis for all seriously ill children with a suspected genetic disorder, including those with cancer. The NHS will also offer the same for all adults suffering from certain rare diseases or hard to treat cancers.

In response to the need for robust, future-proofed systems to manage genomic data, link it to clinical data and make it available for research, Genomics England and IQVIA have announced a collaboration to advance healthcare through the appropriate use of clinical-genomic data. By using IQVIA data management tools combined with Genomics England datasets, the ambition is to enable faster and more efficient research, which in turn should lead to more treatment options for patients.


The report offers a series of recommendations to keep the UK at the forefront of life sciences investment. The first is to ensure that the UK becomes the regulatory and licensing ‘Kitemark’ country globally, enabling it to become a landmark registration country running full studies. Centralised ethics approval has also been highlighted, along with improving the UK record for the uptake of innovative medicines.

The UK should promote innovation in clinical research, particularly in genomic research. Mainstream clinical trials with GPs and consultants would contribute to this, along with the adoption of digital innovations and general public education about the benefit of clinical trial participation. In addition, allowing GPS to search clinical records to find suitable patients for clinical trials would also benefit research.

The UK record for the uptake of innovative medicines should be encouraged, along with the creation of a national policy for the use of de-identified patient data for research, ideally driven by opt-out criteria. Linking datasets across care settings would be enhanced by globally promoting the (HDRUK) health data research hubs, as would creating an environment to support AI solutions for large population screenings of undiagnosed diseases.

Strengthening the UK’s global offer

There will no doubt be challenges ahead, but by focusing on what the UK does well and by exploring steps that can be taken to make the UK even stronger on the global stage, there is reason to have every confidence that the UK will continue to go from strength to strength as a destination location for life sciences investment. As Tim Sheppard says: “IQVIA is confident about the future of the UK and looks forward to continuing to play its part in this flourishing and unique health ecosystem. ”

If you would like to read more, the full IQVIA report can be found here:

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