Many organizations are drawn to the idea of setting up a medical registry because it seems like an easy concept, according to Ana-Marie Jones, executive director of Collaborating Agencies Responding to Disasters.
Yet, successful registries are the exception to the rule, she said.
"Registries are simply not created equal," according to Jones, who is an advocate for vulnerable communities. Indeed, a medical registry is not just a list, but a system that gives information about a certain group of people. It requires resources to manage it, secure it and sustain it over the long haul.
Registries can be used for anything from examining disease trends to conducting research and can be collected and maintained by government agencies or intermediary entities like nonprofits.
They also have utility for emergency planning, a key lesson learned by New Orleans during Hurricane Katrina. After the devastating disaster in 2005, the city’s Health Department knew it had to find a way to identify people who require special assistance during emergencies. The department started a pencil-and-paper Special Needs Registry, stored in a metal file cabinet, and collected many different types of information — everything from age and who lives in the household to medical conditions and medications.
“It didn’t work that well,” said Charlotte Parent, the city’s health director. “It did help them identify some people, but the logistics of using something like that was very difficult.”
The city has since simplified its registry to target only the information it needs to connect with, evacuate and care for people. New Orleans also moved the registry to an Excel spreadsheet and then later revamped it after 2012’s Hurricane Isaac, which illustrated that the spreadsheet was hard to move, access and update. Isolating and pulling specific information, like how many people use breathing machines in different neighborhoods, was also difficult without a database.
The more information a registry contains, the more complex it becomes to manage. New Orleans' registry has quadrupled in size since last year to 2,800 people and is expected to continue to grow to 4,000, causing it to outgrow its current database. The department is now looking for a new system to house the data, with new features like the ability to make automated alert calls, conduct automated reporting and locate residents using geospatial capabilities. Currently the department’s health privacy-trained GIS analyst creates maps from the registry.
And most importantly, planning is at the center of the Special Needs Registry — it helps locate people and their needs. New Orleans’ regular brush with hurricanes has prompted it to create a more refined and useful registry, which Sarah Babcock, emergency preparedness lead for the city’s health department, calls a “living document.” The registry is used not only during hurricane season but also to communicate with citizens regularly — during power outages and a recent ice storm and water boil incident.
“The list is worked all the time; it’s not something we just pull out for hurricane season,” Parent said. “We do this year round.”
All this planning means there’s been less chaos when an emergency hits because people know the city is coming, said Parent, who has seen the registry’s evolution in her eight years with the department. “We stopped being very reactive to what’s going on and truly have become proactive to making sure their needs are met,” she said.
"We stopped being very reactive to what's going on and truly have become proactive to making sure their needs are met," Parent said.
Indeed, though, registries have their issues. For the Functional Needs Registry in St. Louis, data integrity -- updating names, contact information, and medical needs -- has been a priority for the city but also a challenge in the face of government cuts.
Jones said many municipalities are interested in setting up registries. While some are in the beginning stages, others -- like St. Louis and New Orleans -- are more experienced and have seen the opportunities registries can bring but also the challenges that come in maintaining them.
Registry with a Purpose (But No Guarantee)
A registry's power is not just for coordinating the response to a big event, it can also be felt in smaller ways, such as a fire department knowing someone has an oxygen canister or is deaf — both have serious implications in a fire.“It can be something incredibly small — not affecting a lot of people — but for them to have that type of secured information about the vulnerability of the people they are responding to has a lot of utility,” Jones said.
St. Louis serves its vulnerable citizens via the Functional Needs Registry, which helps officials contact and help individuals of all ages with functional needs during emergencies and other events.
“It helps us for the planning of an emergency. We can get some idea for the numbers and locations of where people are,” said David P. Sykora, executive director of the St. Louis Area Agency on Aging.
St. Louis created the registry following a hot summer's power outage in 2006 in which some areas lost electricity for two weeks. "It caused a major problem in trying to deal with our most vulnerable populations," Sykora said.
The only people that the city could locate and serve effectively were those in the city's own home-delivered meals program since the city had access to their information. Although city staff knocked on doors to find others, this seemed like a waste of time. So the city began a registry.
St. Louis’ database is GPS-linked and can map people’s locations by political ward or ZIP code and show who has a mobility issue in each area. The database is maintained on a server outside the city and can be accessed anywhere, though it’s encrypted and has three different security hurdles, Sykora explained.
A flaw with the registry concept is not putting enough resources up front for public education or on the back end for resources, said Jones. She said some people may think that by signing up, there’s a guarantee for services. While organizations can’t make that guarantee, they should be investing in resources based on that list, she said.
St. Louis makes it clear that there’s no guarantee for services, Sykora said. “Our hope is that people understand by having them on the registry, there will be people who know where they are and that they’ll be, as best as can be possible at the time, taken care of.”
Security and Data Integrity
Security is a vital issue and impacts whether people, especially from vulnerable populations, want to opt into a voluntary database, Jones said. St. Louis knows this from its experience trying to protect registrants’ information. Initially, because of a state sunshine law, unless people were protected by a government program, their names could potentially be made public information because they were listed in the registry.Although the health commissioner provided protection by issuing an executive order, only recently did the city get legislative protection for everyone on its registry, Sykora said. Because the names are now safe, the city will begin a big marketing effort to promote the registry. Still, he said, getting everyone to opt in is difficult.
“You have many people who in an emergency need help but they don’t want their name out there on some registry because they’re afraid they’re going to get labeled or they’re afraid it’s government intrusion,” he said.
It’s also important to note that registries set themselves apart from other forms of data since they draw information from multiple sources, as well as comb through likely sources for referrals, according to the U.S. Department of Health and Human Services.
And while all this active seeking and linking of data incurs high costs, it’s important to a registry’s integrity. Registries have varying levels of capacity to keep information updated, which is a nearly universal challenge.
“The registry is only as good as the information in it,” Babcock said, explaining that when the New Orleans registry first started, it had 750 people, not enough to be a good planning number for the city.
New Orleans brings other partners on board to help get citizens to opt in, including dialysis and durable medical equipment operators and vendors, said Parent. It also conducts outreach to train partners in the community who can help sign people up, when authorized, during an intake process.
During hurricane season there are even more connections made. The Health Department sends a HIPAA-compliant map to its response partners to highlight the areas where certain services are in high demand.
In St. Louis, the registry has about 8,000 registrants and information is added and updated internally through the city’s elderly services database from senior centers and meal providers. In addition, people can sign up via multiple ways: online, over the phone, on paper and from a brochure.
Since staffing is always an issue, Sykora said St. Louis uses volunteer organizations like AmeriCorps to keep the registry updated. Registrants also receive semi-annual notifications asking them to update their information, and the city reviews the state’s death registry.
“Updating the data is the most time-consuming effort,” Sykora said. Yet it’s vital to keeping the registry useful. “The key is keeping the addresses accurate in the system. Garbage in is garbage out.”
St. Louis hasn’t had a significant emergency requiring evacuations, though during severe weather, it uses the registry to check on those who are frail, medically needy or have a disability with an automated calling system that tracks which numbers are still valid.
Sykora said St. Louis tries to learn from his community’s and other jurisdictions’ past mistakes, such as the lack of information regarding vulnerable populations during Hurricane Katrina.
Jones of CARD agrees that a registry can be valuable. “But the emphasis is on the ‘can be’ and that’s if it can be deployed and sustained over time and kept accurate and entirely secure,” she said.
Anybody can start a registry, she said, but sustaining it over time is what matters.
