Westminster Health Forum

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Next steps for the use of genomics in healthcare

Morning, Tuesday, 29th June 2021


***Full-scale policy conference taking place online***

This conference will examine the next steps for advancing the use of genomics in healthcare, and priorities for delivering the Genome UK Strategy.


We are pleased to be able to include keynote sessions in this conference with Dr Sarah Byron, Interim Programme Director for Devices, Diagnostics and Digital Technologies, NICE; Professor Sir Mark Caulfield, Chief Scientist, Genomics England; and Professor Sharon Peacock, Executive Director and Chair, COVID-19 Genomics UK (COG-UK) Consortium and Professor of Public Health and Microbiology, Department of Medicine, University of Cambridge.


The conference is bringing together key stakeholders and policymakers together at a time of significant developments in policy around the use of genomics, including:

  • Genome UK: 2021 to 2022 Implementation Plan - with the Government’s ambitions for developing the most advanced genomics healthcare system globally, and aid research to treat deadly diseases
  • the Queen’s Speech - with further focus on research and innovation, as well as a Health and Care Bill to remove unnecessary bureaucracy and to improve innovation and efficiency
  • the pandemic - which has seen developments in the utilisation of genomics to tackle COVID-19
  • the UK Rare Disease Framework - which includes the utilisation of advancements in genomics and improving patient and clinician understanding
  • the UK Health Security Agency - which aims to combine expertise in data analytics and genomic surveillance with capabilities for large-scale testing and contact tracing in order to improve national preparation levels for future pandemics

Areas for discussion include:

  • learning from the use of genomics in the COVID-19 response
  • implementation of the Genome UK Strategy
  • developing a holistic genomics ecosystem
  • overcoming barriers to implementation and priorities for scaling up
  • next steps in the use of genomics in the NHS

The conference will be an opportunity for stakeholders to consider the issues alongside key policy officials who are due to attend from the MHRA; the Office for Life Sciences; BEIS; the DHSC; DIT; the Government Office for Science; HMPPS; HM Treasury; the NIBSC; the Office of the Secretary of State for Wales; and The Scottish Government.


The agenda

  • Priorities for delivering the Genome UK strategy
  • Genomics and the COVID-19 response - lessons learned and improving preparedness to respond to future health threats
  • The ambition of a holistic genomics ecosystem - data infrastructure and sharing, use of interdisciplinary insights, translation of research into clinical care, and the role of open science and the private sector
  • Addressing barriers in the delivery of genomics in healthcare and priorities for scaling up - workforce development, patient awareness and involvement, diversity and inclusion, and targeting investment
  • Next steps for advancing the uptake of genomics in the NHS

The discussion in detail:

Learning from the use of genomics in the COVID-19 response:

  • future preparedness - taking forward best practice on harnessing genomics to effectively respond to public health threats, such as future variants of COVID-19, and progress in genomic surveillance
  • collaboration:
    • lessons learned from international collaboration in tackling the spread of the virus and in understanding COVID-19 variants
    • next steps for deepening partnerships and further cementing the UK’s role as an international leader in genomic sequencing
  • bureaucratic burden - with discussion on cutting down on red tape and unnecessary bureaucracy, the outlook for further streamlining practice, and dovetailing with the use of open science practices

Implementation of the Genome UK Strategy:

  • readying the workforce - priorities for workforce development, skills, improved outreach, and logistical challenges for addressing effective implementation on the ground
  • patient-centred use of genomics - priorities for making the transition, and engaging effectively with patients and their representatives to gather representative samples for the whole population
  • the international outlook - assessing the role of international partnerships and sharing of best practice, with additional funding being allocated to the Global Alliance for Genomics and Health
  • linking progress with wider policy - such as the National Data Strategy, the Health and Care Bill and the NHS Long Term Plan

Developing a holistic genomics ecosystem:

  • collaboration and interdisciplinary insights:
    • reducing the boundaries between research activity and clinical application
    • improving knowledge exchange between healthcare researchers, clinicians, and experts in different fields, including social sciences, artificial intelligence, engineering and mathematics
  • data:
    • priorities for developing data sharing, infrastructure, and open science practices, as well as the use of cloud-based computing and storage solutions
    • best practice for ensuring transparency in how patient data is used
  • private sector - supporting genomics spin-offs and start-ups, and business-led innovation in the genomics sector

Overcoming barriers to implementation and priorities for scaling up:

  • workforce development:
    • upskilling for delivering genomics at a larger scale, with HEE looking to introduce a pharmacy workforce development strategy in genomics
    • the role of the Skills and Post-16 Education Bill to meet employer needs
    • improving awareness and engagement amongst NHS staff
    • opportunities for widening the inclusion of genomics in relevant curricula, in tandem with HEE’s Genomics Education Programme
  • funding and investment - assessing priority areas for investment to facilitate scaling up in the sector, encouraging private investment, and supporting entrepreneurship and SMEs
    • including opportunities presented by the Subsidy Control Bill and recruitment through the Our Future Health research programme
  • patient engagement:
    • improving communication with patients to help them understand the meaning of genomics for their health, with Genomics England utilising new government funding to further explore public attitudes to sequencing
    • guarding patient privacy
    • offering targeted and post-test care, such as genetic counselling, for clients with diagnoses of rare diseases
  • diversity and inclusion:
    • improving the representativeness of genomic datasets to enhance accuracy and reap wider benefits from precision medicine
    • the role of a diverse healthcare workforce, and reaching out to vulnerable and underrepresented groups
    • the potential for dovetailing with efforts to address health disparities between different communities

Next steps in the use of genomics in the NHS:

  • progress in the genome sequencing target - discussing:
    • key steps for staying on target
    • possible challenges caused by the disruption of the pandemic
    • opportunities for speeding up sequencing in light of lessons learned
  • future-proofing healthcare:
    • further long-term goals for offsetting the rising societal cost of healthcare in an aging population
    • possibilities for the use of genomics in prevention, improving population health, and the personalisation of treatments, with new support announced for the UK Functional Genomics Initiative to understand the causes of disease
    • assessing future challenges, and priorities for action plans to respond to them

Key developments:

  • Genome UK and subsequent Genome UK: 2021-2022 Implementation Plan - a strategy laying out the Government’s ambition for the UK to develop the most advanced genomics healthcare system in the world and expand research programmes, with 27 commitments and a renewed focus on:
    • testing and early diagnosis - building on the 100,000 Genomics Project to incorporate genomics partnerships into routine healthcare so as to enhance genomic testing, with specific focus on cancer and rare diseases
    • health equality - ensuring that data is collected for all communities, to better compare risk factors and response to drugs
    • recruitment - aims to recruit 5m people through the Our Future Health research programme, to aid data collection and link health information
    • collaboration - with NIHR, the Medical Research Council and the Wellcome Trust to provide £4.5m to the Global Alliance for Genomics and Health to support data-sharing
  • the UK Rare Disease Framework - the recently launched framework including the utilisation of advancements in genomics and improving patient and clinician understanding
  • Transforming the UK into a life sciences superpower speech - the Health Secretary outlining the Government’s plans, with an extra £17m to support the Genome UK Strategy, and another £20m for health data research
  • Queen’s Speech 2021 - with plans for life science sector expansion, with:
    • R&D funding increasing to £22bn and the introduction of the Advanced Research and Invention Agency (ARIA)
    • the Skills and Post-16 Education Bill and Subsidy Control Bill, which provide opportunities to support skills and investment in the sector
    • the Health and Care Bill - building on the Government white paper to remove bureaucracy and bolster innovation in the NHS
    • opportunities to improve collaboration to aid innovation, including in genomics
  • Saving and improving lives: the future of UK clinical research delivery - DHSC announcing a new vision for clinical research delivery aimed at unlocking the potential of clinical research across the UK
  • Taking steps to bring about a healthier, safer and fairer world - speech by the Health Secretary to the 74th World Health Assembly outlining ideas for a pandemic treaty, including increased genomic surveillance
  • recent developments in utilising genomics to tackle COVID-19:
    • COVID-19 Genomics UK - a partnership of public health agencies and NHS organisations across the UK, as well as academic partners and the Wellcome Sanger Institute, set up in response to the pandemic to facilitate harnessing genomics to combat the virus
    • the UK Health Security Agency (UKHSA) - the recently announced agency for improving the national preparedness to respond to future public health threats, through combining expertise in data analytics and genomic surveillance with capabilities to conduct large-scale testing and contact tracing
    • the New Variant Assessment Platform - recently announced by the DHSC, giving countries worldwide access to the UK’s expertise in genomics to help identify new COVID-19 variants and improve the response to the evolving situation

Policy officials attending:

Our forums are known for attracting strong interest from policymakers and stakeholders. Places have been reserved by officials from BEIS; the Department of Health and Social Care; the Department for International Trade; the Government Office for Science; HM Prison and Probation Service; HM Treasury; the Medicines and Healthcare products Regulatory Agency; the National Institute for Biological Standards and Control; the Office for Life Sciences; the Office of the Secretary of State for Wales; and The Scottish Government.

Overall, we expect speakers and attendees to be a senior and informed group including Members of both Houses of Parliament, senior government and regulatory officials involved in this area of policy, together with regulators, pharmaceutical companies and the life sciences sector, representatives from the NHS, executive agencies including clinical staff, pharmacists, the independent and third sectors, patients groups, law firms, consultancies, and others affected by the issues discussed, as well as academics and think tanks, and reporters from the national and specialist media.


This is a full-scale conference taking place online***

  • full, four-hour programme including comfort breaks - you’ll also get a full recording and transcript to refer back to
  • information-rich discussion involving key policymakers and stakeholders
  • conference materials provided in advance, including speaker biographies
  • speakers presenting via webcam, accompanied by slides if they wish, using the Cisco WebEx professional online conference platform (easy for delegates - we’ll provide full details)
  • opportunities for live delegate questions and comments with all speakers
  • a recording of the addresses, all slides cleared by speakers, and further materials, is made available to all delegates afterwards as a permanent record of the proceedings
  • delegates are able to add their own written comments and articles following the conference, to be distributed to all attendees and more widely
  • networking too - there will be opportunities for delegates to e-meet and interact - we’ll tell you how!

Full information and guidance on how to take part will be sent to delegates before the conferenc



Keynote Speaker

Professor Sir Mark Caulfield

Chief Scientist, Genomics England

Keynote Speakers

Dr Sarah Byron

Interim Programme Director for Devices, Diagnostics and Digital Technologies, NICE

Professor Sir Mark Caulfield

Chief Scientist, Genomics England

Professor Sharon Peacock

Executive Director and Chair, COVID-19 Genomics UK (COG-UK) Consortium and Professor of Public Health and Microbiology, Department of Medicine, University of Cambridge

Chairs

Liz Twist MP

Baroness Neville-Jones

Former Minister of State (Home Office) 2010-2011

Speakers

Samantha Barber

Chief Executive, Gene People

Dr Emma Baple

Medical Lead for Rare Disease, South West Genomic Laboratory Hub and Consultant in Clinical Genetics, Royal Devon and Exeter NHS Foundation Trust

David Atkins

Chief Executive Officer, Congenica

Dr Meriel McEntagart

Care Group Lead, South West Thames Regional Genetics Service, St George’s University Hospitals NHS Foundation Trust

Dr Philippa Brice

External Affairs Director, PHG Foundation

Dr Kenneth Baillie

Senior Clinical Research Fellow, Roslin Institute, University of Edinburgh and Academic Consultant in Critical Care Medicine, Royal Infirmary of Edinburgh

Professor Sarah Coupland

Vice President, Communications, The Royal College of Pathologists and George Holt Chair in Pathology, Honorary Consultant Histopathologist, University of Liverpool

Dr Imran Rafi

Reader in Primary Care and Genomics, St George’s University of London

Professor Sir Peter Donnelly

Founder and CEO, Genomics plc