Chapter 5: Major Multi-Stakeholder Initiatives — Defining the Future of COVID-19 Observational Research


The selected multi-stakeholder COVID-19 RWD initiatives described in this chapter are examples of how best use of data, tools, and networks can greatly contribute to quickly and adequately addressing critical questions on COVID-19 while creating infrastructures and sustainable platforms to address current and emerging COVID-19 observational research questions. The initiatives presented cover different geographic areas, involve different types of stakeholders, and demonstrate that it is possible to urgently address key COVID-19 research needs in partnership.

There are common elements in many of these multi stakeholder initiatives that have led to their success in COVID-19 research. They are open and multidisciplined scientific collaborations with a long-term vision to address multiple types of research questions. They build on existing health care data sources and hospital surveillance systems, and often use federated (decentralized) data networks. They share tools and code, some incorporating common data models to improve transparency and efficiency of research.

Some of these resources were operating before COVID-19, but the pandemic has pushed these multi-stakeholder initiatives to move faster, be more efficient, and demand more frequently updated data while ensuring the highest scientific standards. Through initiatives like these, current and new COVID-19 observational research-specific questions can be answered. If the momentum of such collaborations can be sustained, we may also find new ways of enhancing the use and value of RWD and RWE in other disease areas to drive clinical, regulatory, and key public health decision making.