Keep your government hands off my Medicare! – unless, maybe, if ASPR wants to help you during a disaster…
The New York Times recently ran an article by Sheri Fink, author of Five Days at Memorial (which is about a New Orleans hospital immediately following Hurricane Katrina), titled “U.S. Mines Personal Health Data to Find the Vulnerable in Emergencies.”
The phone calls were part Big Brother, part benevolent parent. When a rare ice storm threatened New Orleans in January, some residents heard from a city official who had gained access to their private medical information. Kidney dialysis patients were advised to seek early treatment because clinics would be closing. Others who rely on breathing machines at home were told how to find help if the power went out.
Those warnings resulted from vast volumes of government data. For the first time, federal officials scoured Medicare health insurance claims to identify potentially vulnerable people and share their names with local public health authorities for outreach during emergencies and disaster drills.
The article mentions several other similar uses of medical data — from text message reminders about vaccinations to identifying ambulance “frequent fliers” — but I’d like to focus on this use of Medicare data to identify patients that rely on power-reliant medical equipment.
Were privacy concerns addressed?
“There are a lot of sensitivities involved here,” said Kristen Finne, a senior policy analyst at the Department of Health and Human Services. “When we started this idea,” she said, referring to using Medicare data for disaster assistance, “there was a lot of ‘are you crazy?’ ”
Ms. Finne noted that the program was painstakingly designed to comply with privacy laws.
Have they tested it?
Aspects of the Medicare program were tested in New Orleans; in Broome County, N.Y., which includes Binghamton; and in Arizona.
Sounds good, right? Any concerns?
Others find the program troubling, however well intentioned. “I think it’s invasive to use their information in this way,” said Christy Dunaway, who works on emergency planning for the National Council on Independent Living, which supports disabled people living at home.
She and others said they were worried that identified individuals could be forced to evacuate to shelters that cannot accommodate people with disabilities, or that incomplete data could provide false assurances of government rescue.
On balance I think this is a good use of data held by the federal government (in this case CMS) for preparedness/response that originally was collected for other purposes. It represents a type of flexibility that is often called for in homeland security missions. An added benefit is a bit of shaking of the obstinate bureaucracy — government agencies are loathe to change or deviate from SOP. An ingrained belief that “this is the way it’s done/this is the way the law is written/etc.” despite almost constant production of new strategic planning documents. CMS is especially guilty of this behavior, institutionally worried about earning any sort of new Congressional attention or even wrath.
Here ASPR (the office of the Assistant Secretary for Preparedness and Response in HHS) is not only looking at the granular level of identifying individuals who Medicare has paid for certain medical equipment that is especially vulnerable in the aftermath of disaster, but providing tools to local agencies to help in the development of general response plans:
The Department of Health and Human Services also plans to release an interactive online map this year indicating how many Medicare beneficiaries have wheelchairs and other medical equipment in various ZIP codes, in part to help health officials think about where to place shelters, stockpile supplies, and inform hospitals and power companies about potential needs.
“Even that information is light-years ahead of what they have currently,” Ms. Finne said.
This article brings up two related, if not obvious, issues regarding ASPR. First, the office is getting slightly better at advertising if not explaining their work. In my view ASPR has been dismal in both regards over the last couple of years. It plays a central role in domestic preparedness and response (while beginning to work in recovery and talk a lot about resilience while waving their collective hands…), with a direct focus on perhaps the most important mission of the health of people following a disaster. Yet institutionally it has a difficult time communicating its work outside of the medical and public health communities. There is a bias towards publishing in peer reviewed journals rather than reaching out via alternative venues to a range of potential stakeholders. Essentially doctors writing for other doctors.
Fink’s article is both a good example of simultaneously trying to get out of this practice, albeit with a reporter naturally inclined toward reporting on such a topic, while at the same time hewing close to their established SOP. The initial exercise took place in New Orleans a year ago. As Fink mentions, they published a description of the underlying method in the Federal Register…last April. While I might understand a desire to cement the program in place and test it in various locations before rolling it out to the public, it wasn’t a secret. At least not to the local New Orleans press who reported on the exercise a year ago:
On Friday, the city and the U.S. Department of Health and Human Services embarked on a new pilot project — the first of its kind in the country — to take a more systematic approach to identifying people with medical needs and helping them during disasters.
During the three-day “emergency preparedness exercise,” focused on New Orleanians with at-home oxygen tanks or ventilators, the two agencies are looked at whether federal Medicare data can be used to track down people on electricity-dependent machines after the power goes out.
If the New Orleans exercise is successful, the model can be rolled out across the country, said Dr. Nicole Lurie, an assistant secretary with the federal health agency.
The exercise was successful. A year ago. It has been rolled out. To state and local public health officials.
The program was presented to state and local public health officials last month. “We are now moving to scale this really across the country,” said Dr. Nicole Lurie, the assistant health secretary for preparedness and response.
“Last month” was literally last month. A year after the successful exercise in New Orleans. I suppose slow and steady wins the race? Just not the race for implementing government innovation or altering ingrained SOPs.
The second issue is an unfortunate characterization of local responsibilities and/or capabilities. In the Fink article, THE ASPR, Dr. Lurie, is quoted:
The idea for the program began in Tuscaloosa, Ala., after a tornado struck in April 2011. An ambulance rolled up to one of the houses left standing to take a woman to the hospital because she had run out of oxygen. “That’s kind of crazy, why can’t somebody bring her an oxygen tank?” Dr. Lurie recalled thinking after watching the scene.
She witnessed a similar phenomenon in New York after Hurricane Sandy. Patients who relied on medical equipment needed a place to plug it in before draining the batteries. Many crowded into emergency rooms, stressing the health care system. Others had no way to call for help. Eventually, emergency teams knocked on every door of darkened high-rises, because officials did not know where the people who needed assistance were.
“All of these people just came out of the woodwork,” Dr. Lurie said one public health official told her after a disaster in New England.
“I started to seethe,” Dr. Lurie said. “It’s your job to know who lives in your community.” And if local officials did not, she added, it was the federal government’s responsibility to help.
All good until the point she “started to seethe.” Exactly how should local public health officials know “who lives in your community?” What mechanism exists to make that possible? What information do they have access to that makes it possible? Under what circumstances, when state and local budgets have long been under stress and the federal agencies – such as the one Dr. Lurie works for – helpfully suggests new requirements and capabilities while cutting funding at the same time?
I’m not arguing against the concept of having situational awareness at the local level. Just that outside of programs involving voluntary self-identification from at-risk groups, what are local officials not doing that cause her to “seethe.” What programs, if she worked at the local or state level, would she implement to do her job to know who lives in her community? What money and manpower would she take away from other programs to accomplish these goals?
A federal program such as Medicare presents unique opportunities for the type of data mining accomplished on at-risk communities described by Fink. I think it is time and money well spent. However, federal officials should refrain from seething at the limitations faced by state and local officials. These days they aren’t exactly helping matters.