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Developing a national strategy to bring pathogen genomics into practice
Sobia Raza
GMI 2016, Rome25th May 2016
About us
The PHG Foundation is a pioneering independent think-tank with a special focus on genomics and other emerging health technologies that can provide more accurate and effective personalised medicine.
• Active since 1997
• Member of Cambridge University Health Partners and Cambridge Institute of Public Health
• Funded by philanthropy, grants, and fees for commissioned work
Our missionMaking science work for healthHarnessing genomic and bioscience research to deliver improved and affordable healthcare
We provide knowledge, evidence, tools and opportunities for policymakers to deliver rational and responsible changes in health policy and practice.
Pathogen Genomics into Practice
Roadmap of policies and practices
35 supporting Recommendations
Organisation specific messages
www.phgfoundation.org/reports/16857
To support the development and
delivery of genomics informed infectious disease services that are
evidence based, high quality, and
available population-wideon an equitable
basis
Bite size briefings
www.phgfoundation.org/id
Project Steering Group
• Dr Tom Barlow - Department of Health (from Mar 2014 – Jul 2014)• Dr Paul Cosford - Public Health England • Professor Saheer Gharbia - Public Health England London• Dr Dorian Kennedy - Department of Health (to Mar 2014)• Professor David Lomas - University College London• Dr Christine McCartney - Public Health England• Professor Julian Parkhill - Wellcome Trust Sanger Institute• Mr Colin Pavelin - Department of Health (from Jul 2014) • Professor Sharon Peacock - University of Cambridge (to Sep 2014)• Professor Tim Peto - John Radcliffe Hospital, Oxford• Dr Estee Torok - University of Cambridge (from Sep 2014)
Our teamDr Hilary BurtonDirector(Consultant in Public Health Medicine)
Dr Mark KroeseDeputy Director(Consultant in Public Health Medicine)
Dr Philippa BriceDirector External Affairs
Alison HallHead of Humanities
Dr Leila LuheshiHead of Science
Dr Sobia RazaData Science – Policy Analyst
Dr Gurdeep SagooHealth Economist / Epidemiologist
Dr Sowmiya MoorthieEpidemiologist / Scientist
Expertise - Stakeholder consultation
PHE microbiology services (Colindale and regional labs)NHS microbiology labs (inc. private providers)WT Sanger InstituteUniversity research departmentsHICF collaborationsDept. of Health Food standards agencyEMBL-European Bioinformatics InstituteGlobal Microbial IdentifierCostello medical consultantsTHIS/NPEx
Professional groups Organisations / departments
EpidemiologistsCCDCsMedical microbiologists Infectious disease cliniciansClinical virologistsInfection control nursesPublic health microbiologistsClinical scientists (microbiology)Clinical scientists (molecular genetics)BioinformaticiansGovt. health policy advisersGovt. genomics policy advisersELSI advisersHealth economistsResearch scientistsClinical informatics experts
Workshops
• WS1–Scoping and horizon scanning to determine current and future range of applications of pathogen genomics and identify barriers to implementation
• WS2 –Work with translational researchers and frontline service users and deliverers to generate recommendations to address barriers to implementation across: – Service delivery– Strategic issues– Data management
Engagement
• Engagement event Discuss report and recommendations with stakeholders:
– Public Health England (PHE)– Department of Health– National Health Service (NHS)– Department for Environment, Food and Rural Affairs (DEFRA)– Animal and Plant Health Authority (APHA)– Food Standards Agency (FSA)
Assess needs
Configure
Quality assure
Accredit
Evaluate
Establish validly & utility
Standardise data formats
Wider applications of genomics in infectious disease
Building an evidence base II: cost effectiveness of PG services
Delivering safe & effective services in a dynamic technology & knowledge environment
Building an evidence base I: developing, demonstrating & evaluating clinical utility
ELSI of implementing pathogen genomics
Strategic coordination & investment
Ensure collation & curation of samples & data
Enable & regulate data access
www.phgfoundation.org/roadmap
The catalyst:
A set of real or virtual structures that amplifies and integrates the current activities in pathogen genomics to accelerate and increase the effectiveness of their impact on patient and population health.
Infectious disease genomics in England-who’s involved?
• The management of infectious disease is spread across a wide range of organisations and professional groups
• Each has a different baseline level of awareness and engagement with genomics and different / multiple roles
Public Health England Wider health system Frontline services
e.g. infection control nurses, field epidemiologists,
microbiology scientists,service commissioners
e.g. Department of Health,NHSE,
Food Standards Agency,DEFRA,APHA,
Industry
Remit spans:Surveillance,
National infection control,National emergency response,
Specialist microbiology services, R&D
Strategic coordination- what’s required?
One health approach
Forum for frontline services workforce
Interoperation of services across organisations
International collaboration
Cross organisational leadership
Synergy in the development of genomics programmes
Interaction with other governments and representation within
international initiatives
Leadership group to ensure strategies are aligned and service
delivery is coordinated
National collaborative network to share knowledge, best practice,
and agree standards
Data integration– what’s required?
Incentives Mechanism
How?
An effective data management strategy to realise the benefits for population health and drive innovation and expansion of genomics
informed services
…and /or a mandate to share data with public
health authorities.
Adequate infrastructure and support to facilitate data
deposition at a practical level
Data integration– what’s required?
Agreement on:
Timing
Data qualityTransparency
Database
To ensure data is available within actionable timeframes for public health and future developments
To ensure proportionate and responsible release of data
through ELSI evaluation
To aid interoperability and allow aggregation and analysis
To ensure processes for sharing are sustainable and
supported
How could genomic & clinical data be managed?
A vision of a data management strategy
• An effective data management strategy to improve current delivery of pathogen genomic services and to drive research, innovation and expansion of future genomics informed services is essential.
• Without strategic coordination of policy and practice across all the relevant organisations involved in the delivery of pathogen genomics, the effectiveness of the technology to inform infectious disease management will be undermined
• Clear national strategy is key to supporting local adoption and diffusion of pathogen genomics and facilitating international infectious disease management
Conclusions
Local National International
How can we work together to support pathogen genomics implementation?
• Strategic intelligence covering regulatory and public affairs, health economics and reimbursement issues
• Technology and health service appraisal• Policy evaluation and development• Health needs assessment and service review• Evaluation and implementation planning
Our services:
www.phgfoundation.org/consultancy
Contact:
[email protected]@phgfoundation.org