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Real-Time Patient-Centered Research Needed to Improve Outbreak Response

A new report finds that real-time patient-centered research is possible during an outbreak, and indeed, necessary to strengthen systems, improve surveillance and response, and create better diagnostics, therapeutics and vaccines.

At the epicenter of every infectious disease outbreak are patients who often face daunting uncertainty and insufficient resources at their disposal, a new report in BMC Medicine indicates.

Emerging and epidemic outbreaks have posed a major public health concern and global security threat. In recent years, the Ebola and Zika outbreaks prompted the World Health Organization to declare public health emergencies of international concern.

Meanwhile, the Commission on Creating a Global Health Risk Framework for the Future estimated the annual cost of a potential pandemic to be about $60 billion.

A well-focused and calibrated public health response would save lives and allocate resources more appropriately. The current reaction to an outbreak, however, “is characterized by an artificial separation of the public health, clinical and scientific response,” the report noted.

Although rapid launch of epidemiological investigations and conventional public health responses typically occur swiftly during an outbreak, patient-centered research often lacks priority in both the planning and execution of a response.

Clinical research occurs subsequently to the public health response and falls short in guiding evidence-based decision-making at the bedside or in public health policymakers’ offices.

“We are likely to continue repeating failures of the past without thoughtful improvement to present systems,” said Amanda M. Rojek, MD, the report’s lead author and a PhD student at the University of Oxford’s Centre for Tropical Medicine and Global Health in Oxford, United Kingdom.

Publishing a report on this subject dovetails with society’s pressing need for change in responding to emerging and epidemic outbreaks. “It is a pertinent time, given the recent Ebola and Zika outbreaks and the significant ongoing risk of disease outbreak worldwide,” Dr. Rojek said.

For instance, the report noted that, “the West Africa Ebola epidemic is set to become a notorious case study of the consequences of under-reaction, whereas the early response to the 2009 A/H1N1 influenza pandemic is widely considered to have been an over-reaction.”

Large-scale international collaboration is crucial amid the “unpredictability, rapidity, and rarity of many emerging infectious disease outbreaks,” the report highlighted.

During epidemics, treating clinicians usually make ad hoc determinations about which medications, fluids or supportive care strategies to offer patients, or they adhere to guidelines for similar diseases and experiences.

In examining recent notable outbreaks, including severe acute respiratory syndrome (SARS), avian influenza, pandemic influenza, Middle East respiratory syndrome-related coronavirus (MERS-CoV) and Ebola virus disease (EVD), the report’s authors found that very few patients benefited from clinical research. “Indeed,” they wrote, “we have yet to identify an effective therapeutic agent for any of these infections.”

With patients providing the main source of information (clinical presentation and outcomes) and materials (pathogens and antibodies), the authors would recommend that all disciplines coalescence around a unified framework. Adequate preparation calls for action on many levels—strengthening health systems, improving surveillance and response capabilities, and creating better pipelines for the development of diagnostics, therapeutics and vaccines.

The report also suggests emulating the successes of other healthcare sectors: “Significant improvements in the care provided for patients treated for battlefield trauma and in pre-hospital settings over the last few decades demonstrate that it is feasible to conduct patient-centered research in austere and challenging environments.”

Susan Kreimer, MS, is a medical journalist who has written articles about infectious diseases and many other health topics. For two decades, her coverage has informed consumers, physicians, nurses and health system executives. Raised in the Chicago area, she holds a master’s degree in journalism from Columbia University and lives in New York City.