INTERNATIONAL COVID-19 DATA INTERNATIONAL RESEARCH ALLIANCE COVID-19 DATA RESEARCH ALLIANCE Launch of the International COVID-19 Data Research Alliance and Workbench गत , हे , 欢 迎 , Bem-vinda! Bienvenue! добро пожаловать, كب لبهأ Bienvenidas, স্ভাগত , Karibu! Välkommen! Welcome! 08/07/2020
INTERNATIONAL COVID-19 DATA RESEARCH ALLIANCE Launch …. Listen … Learn • Why an International Alliance? • Partnership working • Principles • Trust, Transparency, Respect • Research questions • How to get involved • Q&A | 2
COVID-19 represents an unprecedented INTERNATIONAL COVID-19 DATA RESEARCH ALLIANCE public health, social, medical, and economic crisis International COVID-19 Data Research Our challenge Alliance and Workbench There is an urgent need to enable access to The International COVID-19 Data Research data that can be linked with other data in a Alliance and Workbench provide a safe and secure way, for the world’s research coordinated international platform to enable community to answer key questions. Those researchers to access global data to derive answers are urgently needed to save people’s rapid insights about COVID-19 and speed up lives now and in the future. the development of interventions, treatments, and vaccines. Nigeria’s first COVID -19 mobile testing both in Ota, Ogun State, Nigeria. Photo Source: WHO | 3
The COVID-19 Therapeutics Accelerator donors and partners formed the International COVID-19 Data INTERNATIONAL COVID-19 DATA RESEARCH ALLIANCE Research Alliance to accelerate clinical research Key challenges relating to COVID-19 A therapeutic pipeline that is in Poor understanding of the A lack of accurate, early, and its infancy, no vaccine disease mechanisms accessible diagnostic methods yet available Poor coordination Fragmented data across clinical trials We need a research environment to provide shared datasets, collaborative work spaces, and analytical tools to address these challenges | 4
The Alliance will oversee a trusted research environment INTERNATIONAL COVID-19 DATA RESEARCH ALLIANCE to enable global researchers to evaluate research questions Data standards 1 Key capabilities and stance and quality • Deep network of organizations and senior talent to Supporting recruit Alliance members Innovation Engaging and Gateway developm 2 • Proven track record of delivery involving ent and launch practitioners, 5 • Building capabilities on foundation of trust patients Promoting and the • Deploys the data science infrastructure and capabilities participation public 3 to support researchers and improving access • Creating an environment that supports reciprocity between data providers and analysts Aligning approach to 4 Trusted Research Environments | 5
INTERNATIONAL INTERNATIONAL COVID-19 DATA COVID-19 DATA RESEARCH ALLIANCE RESEARCH ALLIANCE To unite data from international clinical trials, biomedical and health research to enable discoveries that Vision benefit all people, everywhere, by reducing the harm of the COVID-19 pandemic. To build a trustworthy international partnership and enduring analysis infrastructure to support a rapid Mission response to the current COVID-19 and future pandemics across the world. | 6
INTERNATIONAL COVID-19 DATA RESEARCH ALLIANCE Developing a Broad Global Alliance Funders Initial Alliance Partners T echnology and data science expertise • COVID-19 Therapeutics Accelerator Funders • African Academy of Sciences • Aridhia • BREATHE Health Data Research Hub • Cytel • COVID19 R&D • Mastercard • Generation Scotland • Novartis Pharma GenOMICC (Genetics of Mortality in Critical Care) NMD Group • • • Genomics England • SeRP (Secure eResearch Platform) • Global Alliance for Genomic Health • HDR Network Canada • Infectious Diseases Data Observatory (IDDO) International Severe Acute Respiratory and • Emerging Infection Consortium (ISARIC) NICE • • SAIL… (as at 30 June 2020) “start small, think big, move fast” | 7
INTERNATIONAL COVID-19 DATA RESEARCH ALLIANCE Quotes from Partners “We are delighted to be part of this COVID-19 “New data being generated from research into Alliance and it’s heartening to see the research COVID-19 are hugely valuable. We have to community coming together at such a critical unlock the full value of these assets by making time to accelerate the generation of research them findable, accessible and securely usable by evidence through data re-use. Having pioneered researchers around the world working in the collaborative data-sharing in resource-limited public’s interest. ” settings with the global scientific community over the last decade, we know that this is a Tariq Khokhar, Head of Data for Science and Health at Wellcome, proven way to translate data into evidence to improve outcomes for patients worldwide. ” Professor Philippe Guérin, Director of the Infectious Diseases Data Observatory (IDDO) | 8
How the Alliance will realise our vision and complete INTERNATIONAL COVID-19 DATA RESEARCH ALLIANCE our mission • Learn from and bring together existing initiatives • Work in partnership with data stewards, data contributors and data users from across six continents at scale, with a specific emphasis on low and middle income countries • Promote and facilitate open research that allows sharing of data, analysis methods, and results to support knowledge synthesis and dissemination | 9
INTERNATIONAL COVID-19 DATA RESEARCH ALLIANCE Alliance Principles • Equity in developing a global approach • Adhere to principles for responsible data sharing and respect the data sharing and privacy preferences of participants • Transparency of governance and operations • Use a proportionate approach to governance based on the “five safes” and support GDPR -grade safeguards • Accountability to best practices in technology, ethics, and public outreach • Inclusivity by partnering and building trust among stakeholders • Collaboration to share data and information to advance human health • Innovation and Agility in order to develop an ecosystem that accelerates progress • Independence through structures and governance Demonstrating trustworthiness in everything | 10
The Workbench lies at the heart of the initiative and INTERNATIONAL COVID-19 DATA RESEARCH ALLIANCE enables our work Discover • Search relevant data sources from around the world data Request • Request data from multiple datasets through a single access mechanism Analyse • The Workbench provides a secure environment for analysis data with a range of tools available • If data cannot leave a local setting, analysis can be sent via Federated access federated compute from the Workbench to the data • Teams of authorised researchers can work together in Collaborate dedicated workspaces | 11
INTERNATIONAL COVID-19 DATA RESEARCH ALLIANCE Robust governance – based on the ‘Five Safes’ Safe People Safe Projects Safe Settings Safe Data Safe Outputs Trained and Data are only used Access to data is Researchers can All research accredited for valuable, ethical only possible using only use data that outputs are researchers are research that our secure have been de- checked to ensure trusted to use data delivers clear technology systems identified they cannot identify appropriately public benefits data subjects | 12
INTERNATIONAL COVID-19 DATA RESEARCH ALLIANCE Building a trustworthy system Public and patient involvement “Public engagement must not be overlooked in the rapid response to COVID- 19” • Input and advice from outset Patient Advisory Group • Involvement in decision-making structures • Community engagement “ If the systems for engagement are not already in place, then you • Clear communication need to adopt a process of ‘ learning and adapting ’ – finding ways of engaging as much as possible, and developing systems as • Transparency you go. ” Dakar Community Engagement Workshop | 13
Organising research questions so we can prioritise, and INTERNATIONAL COVID-19 DATA RESEARCH ALLIANCE secure data sources & analytics tools Disease and Vaccines and Outcomes and Diagnostics Treatments Other? Population Prophylaxis residual unmet need What are the risk How to measure How well do the tests When should I administer Host virus genome Transmission patterns factors linked to severe immunity? perform? interactions? treatment? outcomes? Long term health Can we predict local Speeding up vaccine How quickly to treatments consequences of outbreaks development work? COVID infection Which treatments work best What are the risk Do some vaccines work factors associated with better than others in in the elderly? Renally severe outcomes? patient segments? impaired?... Do some vaccines work Evolution of the disease Which patients benefit best better than others in population segments? from a particular treatment patient segments? How quickly do treatments work? How well do RCT trials translate to real-world setting? RCT results: What is the safety and efficacy of each treatment studied? When should I administer treatment? | 14
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