Can an Open-Source Platform Transform Public Health Reporting and Modernize Medicine?

Healthcare providers and facilities in the U.S. are required by law to report many infectious disease cases as they occur for the public’s protection, but for many, complying is difficult. To reduce this reporting burden and enable them to also rapidly report acute and chronic disease cases, manage disease surveillance, and conduct healthcare surveys, Westat embarked on an innovative research initiative to implement and evaluate an open-source data collection and research platform. The platform allows for real-time access to electronic health records (EHRs) and accelerates advancements in public health and patient-centered care. Leading the research was Westat’s Eric Pan, MD, MSc, FAMIA, ACHIP, an Associate Vice President for Clinical Research. Here, he explains the specific challenges providers face in public health reporting and how this platform can benefit them and the public at large.

Q. What are the biggest challenges that healthcare agencies and providers face regarding public health reporting and research?

A. Much of today’s public health reporting and research data collection is still heavily dependent on costly manual data gathering. When recently conducting cancer surveillance interviews to identify needs, interventions, and the effectiveness of initiatives, some oncology practices made a surprising disclosure. Because of the reporting burden, they admitted to delaying public health reporting of new cancer cases until after patients completed all cancer treatments, months to years later. This added significant delays to cancer surveillance and meant severe data loss about successful treatments and clinical trials for other patients.

Q. Can you describe a specific health issue and explain how this open-source platform could be used to address it?

 A. Once implemented, this infrastructure could automatically detect and report an emerging respiratory disease threat in real time to public health agencies. It would also generate jurisdiction-specific reports and enable customized data extraction—all without requiring human intervention. The information would be coming from EHRs from more than 50,000 U.S. and territorial healthcare sites and help prevent or limit fatalities.

Q. How does this kind of solution create a more level playing field, particularly for small or under-resourced healthcare providers who may not have robust IT teams?

A. This platform can assist healthcare organizations that lack dedicated IT staff or must divert clinical personnel from patient care to manually extract and transfer data from patient records to paper or web-based reporting forms—a time-consuming and error-prone task. It is a great equalizer, enabling small and even solo practices to join public health and research efforts without undue burden. 

Q. What are some of the long-term benefits you envision if this kind of approach is adopted more broadly for public health agencies, researchers, and providers themselves?

A. From our extensive work with public health agencies, we know that a common barrier to data collection is its high cost. We have seen meaningful cost reductions and process improvements in moving from paper to computerized data collection to direct electronic data interfaces that eliminate the need for onsite data analysts.

But building a new electronic data interface for each project is expensive. With the broad adoption of this kind of robust data interface, addressing a new public health emergency, setting up a new disease surveillance, automating clinical trial eligibility checks, and making the latest research available to every provider and every patient at every encounter becomes rapidly attainable nationwide. 

Q. Can this platform help detect cases that might otherwise go unreported or underreported, and how might that change the public health landscape?

A. During our research, we found that an infectious disease case—previously unknown to the public health agency—was detected so early in the treatment process that the agency had no protocol for managing cases at that stage, despite mandatory reporting requirements. It illustrated how this platform can fundamentally change the public health reporting landscape and achieve case detection directly from the first clinic visit, instead of being dependent on laboratory reporting arriving days to weeks later. This could mean identifying and responding to a potential outbreak much earlier.

Q. How will this kind of innovation make a difference in the lives of everyday Americans?

A. EHR systems are modernizing medicine, and their data are improving patient care. In fact, they have the potential to make precision medicine a reality, yet they are locked away in individual health systems.

The platform Westat field tested can unlock the data, making it accessible to public health and research efforts while protecting patient privacy and data integrity. In addition, the data can deepen our understanding of the epidemiology of diseases, enable registries to be updated, ease the way for patients to access clinical trials, produce new treatments, and head off public health emergencies. As such, this meaningfully designed innovation has the potential to significantly improve Americans’ lives.