The Center for Data Innovation spoke with Dr. Nicole Lurie, the Assistant Secretary for Preparedness and Response (ASPR) at the U.S. Department of Health and Human Services. Dr. Lurie discussed her office’s work to use Medicare and Medicaid data to identify vulnerable patients during emergencies and barriers to public health data sharing associated with the Health Insurance Portability and Accountability Act (HIPAA).
Travis Korte: Your office has piloted using Medicare data to identify vulnerable people during emergencies. Can you speak a little about the successes and challenges associated with that project?
Nicole Lurie: During recent disasters like Hurricane Sandy, emergency rooms saw a flood of people who use electrically powered medical equipment at home, like oxygen concentrators. When the power goes out, the machine’s battery backup kicks in, but if the power doesn’t come back quickly, the battery runs out. For people who depend on this kind of equipment, called durable medical equipment, prolonged power outages can mean life or death.
If local health agencies, hospitals, power companies, and emergency managers knew how many people used this kind of equipment and which neighborhoods they lived in or worked in, the agencies could plan better (where to place shelters, for example) and better help their community be resilient. The power companies could prioritize restoring power in neighborhoods with a high number of these medically fragile people. And, if responders knew who these people were, in an emergency they could knock on their doors and get them to safety, or better yet, a charged battery.
A lot of people who use this type of medical equipment rely on Medicare or Medicaid. So my office worked with the Centers for Medicare and Medicaid Services (CMS) to find a way to protect patient privacy and at the same time securely share basic information from CMS claims with a local health department during a disaster response. We tested the concept in New Orleans last year during a disaster drill and in a couple of other cities since then. It’s worked very well, and overwhelmingly people expressed relief that community responders realized the patients would need help in a power outage and would be provided that help. It was the first time, to my knowledge, that claims data has been leveraged to target lifesaving resources to those who need it most in a disaster.
TK: You also held an “Idea Challenge” looking for innovative technological solutions to aiding people with durable medical equipment during emergencies. Did you find the results useful? Do you envision efforts to pilot any of the ideas in the future?
NL: We’ve taken a multi-pronged approach to finding viable solutions to this problem. One facet was a challenge to the technical community to come up with unique ideas. The winner idea was a signaling system when a device ran out of battery. We received some excellent ideas but what was clear was that the problems of integrating new ideas into the marketplace, integrating them into the existing medical equipment, and scaling up needed to be solved, too! To help overcome these, we are working with the National Institute of Standards and Technology to issue standards for how electricity-dependent medical devices can communicate that they are ‘in trouble.’ Through our own Biomedical Advanced Research and Development Authority’s medical devices division, we’re also exploring how we can incentivize industry as public-private partners to address the problem in the next generation of devices.
TK: Your office worked with the Office of the National Coordinator (ONC) to think through integrating emergency response data collection with electronic health records. What’s the current state of affairs in this area, and what needs to be done to enable more interoperability?
NL: Patient care doesn’t start at the hospital, it starts the second a person is picked up by Emergency Medical Services (EMS). Yet often the essential information of what happens to a patient before they enter the hospital doors is lost due to clunky information systems. We want to fix this. We collaborated closely with ONC to launch a Collaboration Community on [crowdsourcing platform] Ideascale to further the conversation on integrating emergency response data with electronic health records. We expect to use this community to discuss other important EMS issues as well and ensure that EMS is included as a part of the healthcare system, especially as it relates to health IT. We also are partnering with ONC on a pilot project to create a single sign-on for a health information exchange in California for health care providers, including EMS, who provide care for patients at facilities outside of the disaster area.
TK: What effects, if any, have laws governing data sharing and portability, such as HIPAA, had on emergency preparedness and response efforts?
NL: HIPAA provides important protections for health information, yet there is some confusion about what can be shared during emergencies. The aftermath of the Boston Marathon bombing is a good example. The Boston Public Health Commission asked several Boston-area hospitals to disclose information about victims of the attack. Some of the hospitals provided the information while others refused, citing HIPAA concerns. More than anything it’s this confusion that prevents essential information from being shared when it’s needed in an emergency. As such, we are working with the Department of Health and Human Services’ (HHS) Office for Civil Rights and Office of General Counsel, to create guidance outlining the situations in which a HIPAA-covered entity can, by law, disclose protected health information to a public health authority.
TK: It seems like there is a great deal of potential for data sharing programs to contribute to emergency preparedness and response. Are there any other partnerships or data sharing efforts you think might be worth further inquiry in this area?
NL: There’s a tremendous amount going on to build community resilience. We’re partnering with Rockefeller Foundation on an international resilience project called 100 Resilient Cities, for example. Through this partnership, the resilience officers designated in 100 U.S. cities can work closely with our regional emergency coordinators to ensure that health is considered from the beginning. We’re also working on a dataset that protects privacy while linking CMS patient claims data and federal disaster assistance data for research to improve our national understanding of the health impacts of disasters.
We’re charting a path forward that leverages great partners, sound science and the latest technology to help our nation build resilience, so health stands up to disaster.
