Download - Linking Genomic and Clinical Data: The HVPA-BioGrid Experience

Maureen Turner, BioGrid Australia

Leon Heffer, BioGrid Australia

Alice Johnstone, BioGrid Australia

Timothy Smith, HVP Australia

John-Paul Plazzer, Royal Melbourne Hospital, Australia

Alan Lo, V3 Alliance, Australia

Finlay Macrae, Royal Melbourne Hospital, Australia

Linking Genomic and Clinical Data: The

HVPA-BioGrid Experience

The Human Variome Project 5th Biennial Meeting 19-23 May 2014 UNESCO, Paris

Data sharing considerations and challenges

Collaborative federation model

BioGrid – a grass roots solution

Data ethics, privacy, security for research

Dynamic data linkage – how BioGrid works

Data access management

HVPA-BioGrid: linking genomic & clinical data

Overview

Clinical- Colorectal Cancer

- Breast Cancer

- Diabetes

- Cardiac Surgery

Population Health- Cancer Registries

- Screening Registries

- Diabetes Registries

- Rare Diseases

Government- Death Dates/Cause

- Admitted Episodes

- Bureau Statistics

- Medicare PBS

Research- Biospecimens

- Clinical Trials

- Audit

- Quality of Life

Administration- Demographics

- Admissions

- Procedures

- Events

In-Hospital- Pharmacy

- Pathology

- Radiology

- Imaging

Maintaining patient privacy

Ethics approval for process and projects

Data governance framework

Secure data management

Authorised data access

Protection of intellectual property

Infrastructure capability

Data Sharing Considerations and Challenges

Collaboration governance

IP management (collaboration and project specific)

Framework for undertaking projects

Commercialisation of project IP

Data access and usage management

Terms for acknowledgement in presentations and publications etc. from use of data

BioGrid Collaboration Agreement

Established 2003 via Bio21 Cluster Victoria to address difficulties of conductingpatient-specific privacy-protected research across institutions and diseases

Created by clinical researchers to ethically access existing and incorporate new data sources for clinical research

Not-for-profit company limited by guarantee owned by 28 members (43 institutions)

Background

BioGrid specialises in linkage of clinical datasets that reside within hospitals and clinics

BioGrid operates in a virtual environment enabling data to be connected and linked across institutions, jurisdictions and diseases

BioGrid provides a centralised infrastructure and resource for the secure integration of data on behalf of its members and collaborators

BioGrid Expertise

BioGrid Members and Collaborators

Ethics approval at each participating institution for BioGrid linkage methodology and processes

Data access controlled and provided- ONLY to authorised users (Data Custodian, HREC)- ONLY in de-identified form- ONLY for ethically approved projects

Data governance and security- Unique subject identifier (linkage key) encrypted- Regular external security audits- All data queries monitored and logged

Data custodian retains FULL control over their data

Data Ethics, Privacy and Security

Streamlined process, single online application- Science - Data requested- Ethical considerations - People involved

Agree to BioGrid Collaboration Terms and Conditionsre data use/security, IP, privacy

Data custodian reviews application, access provided per project application ONLY when approved by data custodian

HREC (low-risk sub-committee) reviews application

Application to Access granted ~1 month (avg)

Applying for Access to Data

Royal Melbourne Hospital

Canberra Hospital

RoyalHobart

Hospital

Royal Adelaide Hospital

Royal Melbourne Hospital

Royal Adelaide Hospital

Canberra Hospital

RoyalHobart

Hospital

NeCTAR grant to improve HVPA data collection tools and to generate and capture data linkage keys for use on the BioGrid platform to enable molecular data to be linked to clinical data

HVPA-BioGrid (NeCTAR Project)

Grant Partners: University of Melbourne, V3 Alliance, University of South Australia, HVP International, InSiGHT, BioGrid Australia, Melbourne Health (Royal Melbourne Hospital)

Pilot linkage project with HVPA, InSiGHT and Melbourne Health relating to colorectal cancer

BioGrid Australia

Reports include relevant genetic variant & clinical

information

HVP Australia NodeGenetic Variant Data

Patient ID #278

Pathology Lab 1Genetic Variant Data

Pathology Lab 2Genetic Variant Data

Patient ID #278

Familial Cancer Clinic

Patient ID #278

Patient Administration Patient ID #278

Genetic TestingPatient ID #278

BioGrid Application, Review & Approval

Process

Health Service A (e.g. Hospital)

Familial Cancer Clinic

Hospital Administration Patient ID #278

Clinical Treatment &

OutcomesPatient ID #278

Health Service B (e.g. Genetics Service)


HVP Australia Node

Record CountGenetic Variant 50K

Health Service A

Record CountPatient Admin. 1.2M

Familial Cancer Clinics 10,000Treatment & Outcomes 5,000

Health Service B

Record CountPatient Admin. 100K

Familial Cancer Clinics 5,000Genetic Testing 75,000

BioGrid AustraliaRecords in Common


HVPAustralia

Variant

Path Service A

Variant

Path Service B

Variant

PAS

Path.

FAMBIZ

Health Service

Chemo.Service

PAS

Tx

Pharm

Dx.

Admit.

Mortality

Cancer Registry

HVPAustralia

Variant

BioGrid is able to integrate de-identified, patient record level clinical and genetic data

Enables HVPA to build a national capability to capture, curate and interpret genetic variant information

HVPA can leverage BioGrid’s online data access application system to ensure data can be shared with authorised users for approved diagnostic, treatment and research purposes

Summary

Thank You

www.biogrid.org.au

[email protected]

+61 (0)3 9342 3167

BioGrid Australia acknowledges its supporters- BioGrid Australia Members and Collaborators

- National eResearch Collaboration Tools and Resources

- Victorian Cancer Agency, Victorian Department of Health

- Victorian Government Department of Business and Innovation

- Australian Government Department of Innovation, Industry, Science and Research

http://www.biogrid.org.au/

mailto:[email protected]