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The priority is to save lives, not be acknowledged.
The coronavirus pandemic changed how clinical researchers view and treat data sharing. Previously it was a challenging proposition, because researchers want to make sure that they receive appropriate acknowledgement for their hard-won data. Now, with millions of lives at stake, the pandemic has prompted an urgent plea for the sharing and mining of existing clinical data and combining our resources. Most scientists now agree that data sharing is a moral obligation to save lives.
Last February, at the start of the pandemic, I wrote about how effectively fighting an epidemic means making urgent and swift changes to policy and infrastructure. In addition to encouraging data sharing, policy makers must change the current rules. One of the best examples of this was the 2003 SARS outbreak, which ushered in new protocols and increased disaster preparedness amongst healthcare leaders. It even changed the way new hospitals are designed and how patients are screened at triage stations.
Despite delayed policy changes, global forces are increasingly acknowledging the positive impacts of data-sharing and making strides to implement collaborative practices into ongoing trials. For example, the World Health Organization's (WHO) Solidarity PLUS trial, which represents the largest global collaboration among WHO Member States, will be sharing anonymized data after the trial completes. Solidarity PLUS is entering its second phase and will be testing four new therapies—artesunate, imatinib and infliximab—in hospitalized patients, to treat COVID-19.
The Solidarity PLUS trial is a global platform study which allows for the assessment of multiple treatments at the same time under a single protocol. By recruiting thousands of patients from all over the world, involving thousands of researchers in over 600 hospitals in 52 countries, this is one real-world example of how post-analysis data-sharing could help accelerate life-saving research.
Yet, this shift towards collaboration does not come without ethical, legal or operational considerations. How we share data and who we share it with is increasingly important—especially as the industry introduces more technologies to streamline data capture.
In the spirit of openness, below are the learnings gathered from working with our customers on 300+ COVID-19 studies in 40 countries across 1,750 hospitals. Below, I’ve outlined some best practices to follow:
COVID-19 has forced scientists and researchers to change their views on data sharing. Now is the time to continue to advance scientific partnerships and research collaborations and shift the current industry mindset towards a data-sharing culture to maximize our effort to save human lives.
Derk Arts, MD, PhD, is the Founder & CEO of Castor