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.

25/06/2020

Introduction to HDRUK Innovation Gateway

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

RFP for Technology

Partner

Minimum Viable

Product

Rapid Development

Task

Gateway Phase 2 starts

Gateway Phase 2

Milestone 1

October 2019 January 2020 Jan - Mar 2020 April 2020 October 2020

| 3

Demo

Gateway Phase 2 – milestone 1 the beginning of a journey

Gateway Update

2 June June Aug Sept Oct 31 Oct28 Apr

Tech partnership

start

Data Access v2

Metadata onboarding

TRE integration v1

Dashboards v1

Development will continue until 30 April 2022, with requirements being refined as we test and learn with our communities

Data Access v1

Data Access v3

Data recommendation Dashboards v2

TRE integration v2

Milestone 1 ends

July

Cohort v1

Collections Semantic search

Data quality tool

Gap analysis

Cohort v2

| 5

Thank you

FRAMEWORKS FOR

INTERNATIONAL COLLABORATION

IN GLOBAL HEALTH DATA SHARINGSolutions for everyday and emergencies

Steven E. Kern, Ph.D.

Deputy Director, Quantitative Sciences

Integrated Development

• 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 EMERGENCIES

N Engl J Med. 2015 Apr 9;372(15):1381-4. Epub 2015 Mar 18.

• 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

GLOBAL HEALTH CHALLENGES TO DATA INTEGRATION

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

2. Data standards and quality

5. Promoting participation and improving access

3. Supporting Innovation Gateway

development and launch

4. Aligning approach to Trusted Research

Environments

1. Engaging and involving practitioners, patients and the public

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

Clinical Reports

PatientsClinicians

Co

nse

nt

Sample / Clinical

Data

Genome Medicine Centres (GMCs)Genome Laboratory Hubs (GLHs)

Research

ers

ClinicalApps

Data C

en

tre

Access Review Committee

Airlock

Export: summary only

Airlock

Import: Tools External data

Di-identified

NHS Firewall

Safe p

eo

ple

Safe projects

HPC

Safe output

Safe setting

ClinicalApps

Safe return

ClinicalApps

Identifiable

ResearchApps

ResearchApps

ResearchApps

Safe computing

Public Cloud

VDI

Safe data

TRE Green Paper (draft)

https://ukhealthdata.org/projects/aligning-approach-to-trusted-research-environments/

Consultation on Green PaperTime line

Draft document at workshop on 12th March

Revised draft publicly available from 30th April

Consultation open until 26th May

24 responses received including individual or organisational responses from a wide range of stakeholders (see opposite)

Green paper being revised to take into account responses

• Patient and public representatives (4) – UseMyData; Understanding Patient Data; medConfidential; HDR UK Public Advisory Board

• NHS & other data providers (4) – University Hospitals Birmingham; Liverpool Health Partners; NHS Digital; NIHR BioResource

• Academia (4) - The University of Manchester; University of Edinburgh; University of Oxford; and Wellcome Sanger Institute.

• 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