The pandemic has shown us the need for high-quality data to detect pandemic outbreaks and develop vaccines. While there have been considerable efforts to generate and share data, many challenges remain.
In a recent panel session, European experts commented that Europe is falling behind the US in harnessing patients’ data to improve healthcare. That was the clear message from expert speakers in a panel discussion on data bottlenecks in healthcare at the EuroScience Open Forum held in July 2022.
A recent study published in The Lancet Digital Health used health data from 57 million people in England to comprehensively picture the pandemic in a single country. They reported, "A key challenge of using multiple data sources is the harmonization of information across each source in the absence of a gold standard since each dataset contained information at different levels of resolution and reflected variations in healthcare delivery across the duration of the pandemic. "
An upcoming UK webinar on August 25, 2022, will discuss "Digital Health Networks Debate Series: Federated Data Platform Debate" will discuss the new £350m platform intended to link local data for a national capability for the planning of care, pandemic response, population health management, integrated care. We need more discussions and to engage in a global dialog to create scalable systems across borders.
Kohane and Omenn, in a New England Journal of Medicine Perspective article, discussed that "Even in countries with universal health identifiers (which USA lacks) such as France, Singapore, Italy, & Germany, process of integrating vaccination data with health record is fraught & often delayed despite national e-health initiatives.
There are several initiatives to study long-term COVID-19, such as the Recover initiative (USA), 4CE Consortium (USA), NC3 Study (USA), Johns Hopkins COVID Long Study (USA), ZOE Covid Symptom Study (UK & Harvard), UK LOCOMOTION study, Elaros C19-YRS COVID-19 Yorkshire Rehabilitation Scale (UK), Duke CovIdentify (USA), MyPHD App a Stanford Infectious Disease and COVID-19 Wearables Study (USA), Responsum Health COVID Study (USA).
Aligning the data models of global COVID-19 studies would allow for comparison and aggregation of data sets. Often we build silos that remain silos. Can we develop a roadmap to promote more collaboration across groups?
We will need more international cooperation to tackle the many pandemics problems for both research and public policy development. My colleagues and I recently published on the topics of digital health diplomacy to encourage data sharing across groups and counties. We have also published a discussion paper on digital vaccine passports, which is one example of a complex international application that would require data sharing and authentication across borders.
We hope to engage you in a discussion on how we can create more scalable, interoperable, and accessible data sets that can accelerate our biomedical discovery efforts and help inform public health policies and pandemic preparedness.
We invite you to participate in future DCI Network forums that seek to engage a wide range of stakeholders from healthcare, business, government, academic, and non-profit advocacy groups. If we do not resolve some of these issues, a more severe pandemic may result in an existential threat to our society. Let's discuss these critical topics.
Yuri Quintana, PhD
Chief of Division of Clinical Informatics, Beth Israel Deaconess Medical Center
Founder, The DCI Network