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Challenges preventing the NHS from harnessing genomics

In recent years there have been significant advancements in the field of genomics, which have allowed researchers to map and understand the function of the total genetic material present in a patient. However, the NHS has been slow to take advantage of these breakthroughs.

By Dr Chris Rice, Senior Partnerships Manager, Public Policy Projects

Genomics research and technologies now offer the potential for the early implementation of targeted medical interventions and the tailoring of treatment plans based on a patient’s genetic profile to optimise drug selection and dosage of medicines –enhancing treatment efficacy and minimising adverse reactions.

Interrogation of a patient’s genome can help to understand the underlying genetic basis of diseases, leading to the development of innovative therapies and breakthroughs in previously challenging medical areas. Genomics holds the potential to change the lives of patients in the NHS by offering personalised and precise approaches to disease prevention, diagnosis, and treatment, thereby potentially reducing costs while drastically improving the quality of life of millions of patients.

The UK is a life sciences hub, a global centre of great innovation, which is uniquely placed to harness the full potential of healthcare genomics. In recent years, the UK has been ambitious in launching genomics programmes, including the 100,000 Genomes Project, initiated in 2012, which by 2018 had sequenced and analysed the genomes of one-hundred-thousand patients with rare diseases and cancers.

Likewise, the NHS Genomic Medicine Service (GMS) was established in 2018 to integrate genomic testing into routine healthcare. Through the GMS, patients with certain rare diseases and cancers gained access to genomic testing to aid in diagnosis and inform personalised treatment plans. This was continued through the establishment of Rare Disease Genomic Medicine Centres, designated by the NHS as hubs to enhance the diagnosis and management of patients with rare genetic conditions by utilising the knowledge gained from genomic sequencing.

Although enormous strides have been made in the progress of genomics, hopes of continuing and fully realising the potential of these advancements for patients may be hampered by systematic barriers present in the NHS.

For example, the ongoing NHS workforce issues mean that there is a chronic shortage of healthcare professionals across various disciplines, including doctors, nurses, and allied health staff required to implement a nationwide genomics programme. This is exacerbated by the 12.5 per cent attrition rate of existing staff due to retirement, burnout, or migration to other countries.

Digital security

Another barrier is the lack of standardised and interoperable electronic health record systems across different NHS trusts and healthcare facilities. This fragmentation hinders seamless genomic data sharing, making it difficult for healthcare providers to access complete and up-to-date patient information.

The handling and storing of patient medical data in the NHS has long been a subject of concern and scrutiny with the 2016 Wachter Review in particular highlighting the importance of robust data security measures to protect patient information. Care Quality Commission reports have since raised concerns over existing data security and privacy. To make matters worse, the ever-evolving technology landscape poses challenges in terms of future health data storage, including genomic data. As data storage requirements grow, the NHS must continually update its existing infrastructure to accommodate increasing volumes of data while maintaining robust security measures.

Data security is a serious concern with the ever-present threat of health data breaches and cyber-attacks; the NHS holds vast amounts of sensitive patient information, making it an attractive target for hackers. This was exemplified by the WannaCry global cyber-attack in 2017, which affected NHS hospitals and clinics, causing appointment cancellations and delays in patient treatment. The attack prompted a review of IT systems and practices within the NHS to identify vulnerabilities, but this highlights the extent to which the NHS must prioritise cybersecurity as a fundamental aspect of its future operations.

This includes investing in advanced threat detection and prevention tools, conducting regular cybersecurity training for staff, establishing clear protocols for responding to cyber incidents, and ensuring that all systems and devices used in patient care meet stringent security standards. Collaborating with cybersecurity experts, sharing threat intelligence, and staying informed about the latest cyber threats are also crucial for keeping patient data secure and maintaining trust from the wider UK populatio

Harnessing genomics within a constrained NHS

Despite the life sciences strengths of the UK, the NHS has traditionally faced challenges in fostering, encouraging, and implementing innovation. Several factors contribute to this, resulting in barriers to the goal of improving patient care and healthcare delivery. One major issue is bureaucratic red tape, often inherent within large and complex organisations, which makes it daunting to navigate through layers of bureaucracy to implement innovative ideas.

Additionally, the lack of dedicated resources for innovation and research poses a significant obstacle. Budget constraints and competing priorities often lead to limited funding and support for innovative projects. This lack of financial support makes it challenging for healthcare professionals and entrepreneurs to develop and scale their innovative solutions.

Furthermore, there is a prevalent ‘siloed approach’ to healthcare delivery within the NHS. Different departments and trusts may not effectively collaborate or share best practices, making it difficult for innovative ideas to gain traction and spread across the entire system. Moreover, the time-consuming process of policy and regulatory approval makes it challenging for regulations to keep pace with the rapidly evolving healthcare landscape, resulting in the slow adoption of new technologies and practices.

To overcome these barriers, and to stimulate innovation, the NHS must foster a culture that values creativity, experimentation, and learning from failure. Creating dedicated funding streams and support mechanisms for innovative projects, as well as simplifying the approval process for new technologies, will also encourage and accelerate innovation. Emphasising collaboration, breaking down silos, and integrating new technologies will be essential to harnessing the power of genomics and improving the lives of millions of patients.

In its Global Genomics series, Public Policy Projects (PPP) has been exploring how the full potential of genomics can be harnessed for healthcare and how to ensure the equitable sharing of the benefits of genomics technologies in the UK and further afield. By acting as a neutral broker, PPP has initiated conversations across the NHS, with academic researchers, policymakers and solutions providers from industry. PPP will continue this work at its 2nd Global Genomics Conference, to be held in London on 9th November 2023, and in its future programmes next year.

For more information on this, please contact Dr Chris Rice, PPP Senior Partnerships Manager, Global Genomics, at chris.rice@publicpolicyprojects.com.

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