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:

leila.luheshi@phgfoundation.orgsobia.raza@phgfoundation.org

sobia.raza@phgfoundation.org