Vision and mission
ICODA’s vision was 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.
ICODA’s mission was 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 was 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 sought to help overcome the challenges of data sharing.
We offered data contributors a streamlined process to facilitate access to data, with rigorous data governance based on the ‘five safes’ framework. Importantly, data contributors could retain control of decisions about how data they hold can be accessed and used. Our secure workbench environment included a wide range of analytical tools and fosters collaborations between researchers and data scientists, to support high quality science. Where data could not be transferred, we pioneered the use of federated analysis across data repositories.
Our focus was research-led. We used exemplar or “Driver Projects” – addressing specific COVID-19 related research questions, and brought together a range of datasets for researchers to analyse and deliver new insights. These Driver Projects also allowed us to test our processes and tools as we built an approach for the long-term. Our ambition was to develop an enduring and scalable analysis infrastructure that transformed 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 brought together an inclusive alliance of global Partners, learning from each other to share best practice. By working collaboratively, we ensured a coordinated approach to help address the challenges of data sharing.
We wanted to support researchers from around the world, and particularly from low- and middle- income countries, to collaborate effectively together as equal partners. We brought together an international mix of data from a wide range of countries, with equitable access for all.
We needed to ensure that communities, patients and the public can had confidence in the approach we were taking. We included public and patient representatives in our decision-making processes, and supported our driver project teams in embedding public and community involvement from the outset. With an ambition to be truly global, we recognised that engagement needed to look different in different regions, and we sought local advice to help us respect local cultural sensitivities.
From the beginning, we aimed to be fully transparent across all of our activities. You can find information about the data we held, the research projects that were approved and who our researchers were here.
We had 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 was 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 worked together were vitally important. ICODA was an open and inclusive organisation and we asked our Researchers and Partners to subscribe to our principles, that included equity, transparency and responsible data sharing. We sought to:
- Deliver public benefit through responsible use of data
- Foster equity in developing a global approach
- Respect the patients and research participants who contribute data
- Protect privacy through commitment to the Five Safes framework
- Be inclusive and collaborative
- Be transparent across all activities
- Recognise the contribution of data generators
- Drive innovation to develop an effective data sharing ecosystem
Central to building and maintaining a trusted global partnership was ensuring robust and transparent governance processes, with clear lines of accountability. We put in place a structure to provide strong oversight of our work, including scientific advice and patient and public engagement:
- Executive Leadership Team – accountable for steering and effective delivery of the ICODA initiative
- Scientific & Strategic Advisory Committee – international experts provided 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 provided high-level advice on ethics and data governance, helping us to build a trustworthy ecosystem
- Statistics Expert Group – specialist advisors advised on statistical methods and analytical approaches, to inform the development of data dictionaries and new tools, and support researchers to undertake high-quality research using the Workbench
These organisations advised and guided the work of our core ICODA team.