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Breakout 7: What Do National and International Health Data Breakout 7: What do national and international health data researchers need in a post-COVID-19 world? • Chairs: • Andrew Morris, Director, HDR UK • Emily Jefferson, Professor of Health Data Science and Director of Health Informatics Centre at University of Dundee • Panellists: • Gerry Reilly, Chief Technology Officer, HDR UK • Steve Kern, Deputy Director Quantitative Sciences, Bill & Melinda Gates Foundation • Tim Hubbard, Professor of Bioinformatics at King’s College, Head of Genome Analysis at Genomics England This session will start at 14:50 BST. Please use the Q&A function to ask questions to speakers. You are welcome to comment using the chat function, but we cannot guarantee this will be monitored. Introduction to HDRUK Innovation Gateway 25/06/2020 Gerry Reilly – Chief Technology Officer, HDRUK The Gateway: fundamental to the world’s health data research, trusted by patients, public and practitioners • We are on a journey and this is just the beginning • We first tested the concept with a Minimum Viable Product • Work has now started on the next iterations of the Gateway, engaging data custodians, patients, public and practitioners October 2019 January 2020 Jan - Mar 2020 April 2020 October 2020 RFP for Minimum Rapid Gateway Gateway Technology Viable Development Phase 2 Phase 2 Partner Product Task starts Milestone 1 | 3 Demo Gateway Phase 2 – milestone 1 the beginning of a journey Collections Gap analysis Semantic search Gateway Update Cohort v1 Cohort v2 Data quality tool Milestone 1 ends 28 Apr 2 June June July Aug Sept Oct 31 Oct Data Access v2 TRE integration v1 Data Access v3 TRE integration v2 Data Access v1 Tech Metadata onboarding Dashboards v1 Data recommendation Dashboards v2 partnership start Development will continue until 30 April 2022, with requirements being refined as we test and learn with our communities | 5 Thank you FRAMEWORKS FOR INTERNATIONAL COLLABORATION IN GLOBAL HEALTH DATA SHARING Solutions for everyday and emergencies Steven E. Kern, Ph.D. Deputy Director, Quantitative Sciences Integrated Development GLOBAL HEALTH EMERGENCIES N Engl J Med. 2015 Apr 9;372(15):1381-4. Epub 2015 Mar 18. • Build on a strengthened non-emergency system • Develop infrastructure for efficient mobilization now • Scalability of everyday systems with rapid enough response • Proactive preparation rather than reactive reaction Bill & Melinda Gates Foundation 2014 8 GLOBAL HEALTH CHALLENGES TO DATA INTEGRATION • Changing the conversations • Data Ownership to Data Stewardship • Changing the expectations • Sharing as an “opt in” activity to “opt out” • Changing the operations • Initiating in crisis to accelerating from existing activity Bill & Melinda Gates Foundation 2014 9 An archipelago of data islands Today we live in a world where global health data is often: ▪ Missing ▪ Of poor quality ▪ Siloed ▪ Redundant ▪ Under-utilized Integrating Data Archipelagos across the World Time to move from data distribution to Trusted Research Environments (TREs)– Championing the principles for change nationally and internationally Tim Hubbard, Associate Director Health Data Research UK London HDRUK One Institute: Breakout 7 - 16 June 2020 14:45 - 15:35 Priority Areas 3. Supporting 2. Data standards and Innovation Gateway quality development and launch 1. Engaging and involving practitioners, patients and the public 5. Promoting 4. Aligning approach to participation and Trusted Research improving access Environments Summary • Proposal that UK HDR Alliance commits to ONS “5 safes”. • Central principle: • no distribution of individual level data; • all processing and analysis within Trusted Research Environment (TRE) (safe setting) • Multiple examples of TREs operating successfully in this way Public is highly sensitized to issues around use of health data. Clear commitment to operating in this way provides a unique chance to “reset” public confidence. Office of National Statistics “Five Safes” • Safe people • Technical skills to use the data; compliance with training requirements; signed confidentiality agreement • Safe projects • Research project is appropriate, ethical, will benefit public; results will be published • Safe setting • Researcher only as access to data within a controlled environment: no data distribution • Safe outputs • Export of results for publication controlled to ensure confidentiality is maintained • Safe data • Data within controlled environment is di-identified Data reuse via distribution • Specific request for access received, reviewed, approved • Specific anonymised dataset prepared within safe haven • User downloads dataset and carries out analysis on own computer system • Issues • Data custodian loses of control of data • Cannot completely guarantee anonymity • Lack of public trust • Genome data can only be de-identified • Holding a distributed copy of health data can be a liability under GDPR • Overall expense of transferring, storing, maintaining multiple copies of large datasets Data reuse via access • Generic anonymised dataset prepared within a Trusted Research Environment (TRE) • Generic request for access received, reviewed, approved • User logs into TRE and carries out analysis • User requests export of results (summary data) • Benefits • Data custodian maintains control of data; retains public trust • Privacy controls shifts from individual to summary level • Data privacy no longer dependent on anonymization process; facilitates safe analysis of broader datasets • Less costly holding and securing a single copy of the data • Technological advances make centralized research environment practical • Virtualisation makes bringing algorithms to data easier • Cloud computing makes provision of scalable compute environment for many users possible Example: TRE design for 100,000 genomes project Safe computing Safe output Public Safe return Export: Cloud summary only Data Centre Data Clinical Reports people Safe Clinical Research HPC Researchers ClinicalClinical ResearchResearch Airlock AppsApps AppsApps Apps Apps VDI Identifiable Di-identified Safe data Airlock Safe setting Import: Tools Sample / Access Review Consent External data Clinical Committee Patients Data Clinicians Safe projects Genome Medicine Centres (GMCs) Genome Laboratory Hubs (GLHs) NHS Firewall TRE Green Paper (draft) https://ukhealthdata.org/projects/aligning-approach-to-trusted-research-environments/ Consultation on Green Paper Time line Draft document at workshop on 12th March • Patient and public representatives (4) – UseMyData; Understanding Patient Data; medConfidential; HDR UK Revised draft publicly available from 30th April Public Advisory Board Consultation open until 26th May • NHS & other data providers (4) – University Hospitals 24 responses received including individual or Birmingham; Liverpool Health Partners; NHS Digital; NIHR organisational responses from a wide range of BioResource stakeholders (see opposite) • Academia (4) - The University of Manchester; University of Edinburgh; University of Oxford; and Wellcome Sanger Institute. Green paper being revised to take into account responses • System-level stakeholders (4)– DHSC; The Health Foundation; PRSB; The Alan Turing Institute • TRE Service Providers (4/5) – AIMES; Aridhia; BC Platforms; Faculty; NHS Digital (counted above) • Consultancies (3): RISG Consulting; PA Consulting; Agile Health informatics Ltd Panel discussion and audience Q&A.
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