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.


It follows the publication of Genome UK, the Government’s strategy setting out ambitions for the UK to develop the most advanced genomics healthcare system globally within the next decade, and the Future of Health and Care white paper, with reforms to remove unnecessary bureaucracy to improve innovation and efficiency.


It is also taking place in the wake of the pandemic, which has seen developments in the utilisation of genomics to tackle COVID-19, andthe recently announced 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:

  • implementation of the Genome UK strategy
  • learning from the role of genomics in responding to COVID-19
  • developing a holistic and collaborative genomics ecosystem
  • priorities for data sharing and open science
  • diversity, inclusion and patient involvement in genomics

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

Areas for discussion:

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
  • 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 in addressing effective implementation on the ground
  • patient-centred use of genomics - priorities for making the transition, and engaging effectively with patients and their representatives
  • the international outlook - assessing the role of international partnerships and sharing of best practice
  • linking progress with wider policy - such as the National Data Strategy, the Future of Health and Care White Paper 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, and 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
    • improving awareness and engagement amongst NHS staff
    • opportunities for widening the inclusion of genomics in relevant curricula
  • funding and investment - assessing priority areas for investment to support scaling up in the sector, encouraging private investment, and supporting entrepreneurship and SMEs
  • patient engagement:
    • improving communication with patients to help them understand the meaning of genomics for their health
    • 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
    • assessing future challenges and priorities for action plans to respond to them

Key developments:

  • Genome UK - the recent strategy laying out the Government’s ambition for the UK to develop the most advanced genomics healthcare system in the world over the next 10 years, focusing on three main areas:
    • personalised medicine and diagnosis - incorporating genomics into routine healthcare and improving the treatment of illnesses, with a specific focus on pharmacogenomics and cancer treatment
    • prevention - driving preventative and predictive care by improving the use of genomics in early life screening and targeted, personalised screening
    • research and innovation:
      • supporting translational research and removing the boundary between research and clinical practice
      • improving the access to and the responsible use of genomic data
      • addressing ethnic bias in genetic datasets
  • the UK Rare Disease Framework - the recently launched framework including the utilisation of advancements in genomics and improving patient and clinician understanding
  • the Future of Health and Care White Paper - including reforms to remove unnecessary bureaucracy and to build on improvements achieved during the pandemic to help improve innovation and efficiency going forward
  • Saving and improving lives: the future of UK clinical research delivery - the recent DHSC announcement of a new vision for clinical research delivery aimed at unlocking the potential of clinical research right across the UK
  • 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
  • the NHS Long Term Plan:
    • including the ambition for the NHS to be the first national healthcare system to include whole genome sequencing as a part of its routine care
    • the NHS Genomic Medicine Service:
      • for delivering on the commitments of the Plan
      • including the launch of seven local GMS alliances for implementing it on a local level and helping to embed genomics into clinical practice and patient care pathways
  • genome sequencing - the ongoing government ambition to sequence 5m genomes by 2023/24 to help develop new treatments for cancer and rare diseases
  • Standards of proficiency for registered nurses - the earlier inclusion by the Nursing and Midwifery Council of an understanding of genomics in the proficiency standards for registered nurses
  • Other relevant major policy developments:
    • the National Data Strategy - set to improve the UK’s data infrastructure, drive efficiency in the delivery of public services, and speed up the sharing and international flow of data
      • NHSx Health and Social Care Data Strategy - the upcoming strategy to align with the NDS and improve the use of healthcare data in England
    • the R&D Roadmap - setting out Government’s ambitions for developing the UK’s R&D capacity, followed by the 2020 Budget commitment to increase public investment in R&D to £22bn by 2024/25, as well as the recent announcement of the Advanced Research & Invention Agency (ARIA), a new independent research body for funding high-risk scientific research

Policy officials attending:

Our forums are known for attracting strong interest from policymakers and stakeholders.


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 conference



Keynote Speaker

Professor Sir Mark Caulfield

Chief Scientist, Genomics England

Keynote Speakers

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

Chair

Baroness Neville-Jones

Former Minister of State (Home Office) 2010-2011

Speakers

Dr Imran Rafi

Chair, Clinical Innovation and Research Centre, Royal College of General Practitioners

Professor Peter Donnelly

Founder and CEO, Genomics