Vision and mission
Our vision is to unite international health research data to enable discoveries that benefit everyone, everywhere, by reducing the harm of COVID-19; and enable an efficient data response to future pandemics and other health challenges.
Our mission is to build an open and trustworthy international research partnership to support a rapid response to COVID-19 and a long-term alliance for making data accessible to health researchers and scientists around the world.
“There is enthusiasm and an unprecedented response from the research world to work on solving problems related to COVID-19 but it is challenging to do as isolated groups. Bringing people together provides the opportunity to learn from each other, to collaborate in analysis and in understanding questions that are important across the globe to address the pandemic.”
Bill and Melinda Gates Foundation
“Responsible sharing of high-quality research and health data is critical to the field of life sciences; this need is ever more apparent now, as the world faces one of the worst disease outbreaks in history. We are proud to support the International COVID-19 Data Alliance as it convenes the community to accelerate research and improve health outcomes."
Chief Executive Officer at the Global Alliance for Genomics and Health (GA4GH)
What we do
Our aim is to empower researchers to access health data from around the world, to address key research questions to tackle COVID-19. Too often, data is siloed or too difficult to find, access and use effectively. By working together and building a trustworthy approach, we can help overcome the challenges of data sharing.
We offer data contributors a streamlined process to facilitate access to data, with rigorous data governance based on the ‘five safes’ framework, see below. Importantly, data contributors can retain control of decisions about how data they hold can be accessed and used. Our secure workbench environment includes a wide range of analytical tools and fosters collaborations between researchers and data scientists, to support high quality science. Where data cannot be transferred, we are pioneering the use of federated analysis across data repositories.
Our focus is research-led. We are prioritising “Driver Projects” – specific research questions, bringing together a range of datasets for researchers to analyse to deliver health impact. These Driver Projects also allow us to test our processes and tools as we build an approach for the long-term. Our ambition is to develop an enduring and scalable analysis infrastructure that will transform the way data can be accessed and used to tackle future pandemics and health challenges.
“We do not want to control data. That is not our job. Our job is to think through the policies, the tools, the standards, the governance, and the public engagement that enable collaboration and interoperability, which we define as the ability to work across organisational boundaries with no additional effort.”
Director, Health Data Research UK and Chair, ICODA
Building a global alliance
We are bringing together an inclusive alliance of global Partners, learning from each other to share best practice. By working collaboratively, we can ensure a coordinated approach to help address the challenges of data sharing.
We want to support researchers from around the world, and particularly from Low- and Middle- Income countries, to collaborate effectively together as equal partners. We will bring together an international mix of data from a wide range of countries, with equitable access for all.
We need to ensure that communities, patients and the public can have confidence in what we do. We are including public and patient representatives in our decision-making processes, and want to embed meaningful public involvement. With an ambition to be truly global, we recognise that engagement will need to look different in different regions, and we will seek local advice to help us respect local cultural sensitivities appropriately. Find out how to get involved!
From the beginning, we aim to be fully transparent across all of our activities. You can find information about the data we hold, the research projects that have been approved and who our researchers are here. We will also publish information about research applications that have not been approved.
We have robust policies and processes for data governance, to protect privacy and reduce the risk of data misuse. In order to ensure responsible use of data, our approach is based on the on the ‘Five Safes’ framework:
As a new alliance, convening a global response to a critical health issue, the ways in which we work together is vitally important. ICODA is an open and inclusive organisation. We ask our Researchers and Partners to subscribe to our Principles that include equity, transparency and responsible data sharing:
- 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
- Enable high quality reproducible research through transparency and sharing best practice in analytics
A key plank of building and maintaining a trusted global partnership is ensuring robust and transparent governance processes, with clear lines of accountability. We have put in place a structure to provide strong oversight of our work, including scientific advice and patient and public engagement:
- Alliance Forum – provides a venue to bring all of our partners together, giving an opportunity to share ideas and input into our development
- Board – representatives from our key partners and advisory committees inform our high-level strategy and provide advice to the Executive Leadership Team. We are currently in the process of establishing the Board.
- Scientific & Strategic Advisory Committee – international experts provide high-level advice to help us identify opportunities to tackle the COVID-19 pandemic, to deliver scientific impact and overcome the challenges of data sharing
- Ethics Advisory Committee – international experts provide high-level advice on ethics and data governance, helping us to build a trustworthy ecosystem
- Statistics Expert Group – specialist advisors able to review statistical methods and analysis approaches, to inform the development of data dictionaries and new tools and support researchers to undertake high-quality research using the Workbench
- Patient and Public Expert Group – help us embed public involvement and community engagement in a meaningful way across all our activities
- Core Funders Committee – oversees investment in ICODA and supports the Alliance to achieve our goals
These organisations advise and guide the work of our Executive Leadership and Delivery Teams