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Ref: Service offers medical information to help situational awareness for 911 calls

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Firm tracks disabled in case of emergency

By John Simerman
Contra Costa Times
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Struggling to keep track of the frail and disabled who may need extra help in an emergency, San Ramon Valley firefighters are set to partner with an East Bay Internet company on an unusual high-tech plan -- an online disaster registry that would store residents' personal details for a fee.
But whether residents would pay for the privilege of giving their health status, living situation and other intimate information to an untested firm, whether it can safeguard it and whether the registry would help much in a major catastrophe are questions that hover over the concept.
The district's board voted last week to contract with Berkeley-based SMART911, which would charge residents $2.20 a month per phone line to register their names, addresses, home details, disabilities, medications and other data.
The information would appear to fire dispatchers with a 911 call. In a disaster, they could make maps of residents who might need rescue.
The service is in technical trials and has never been deployed, said Alan North, the company's president. Emergency officials say a few other vendors promote similar services, but the fire district may become the first agency in the Bay Area to buy into one.
"When they call 911, we normally get their address and their telephone number. This service gives us a targeted response instead of this sort of broad-brush approach," said Richard Price, assistant fire chief with the district, which covers nearly 150,000 residents.
"If we had an earthquake and we wanted everybody that met particular criteria -- nonambulatory or blind -- we could query the conditions we wanted and produce a list."
A $3.30-per-month "enhanced" service would cover all phone numbers in a home and allow residents to add photos -- which could help police spot relatives who disappear or wander off.
Chris Boyer, Contra Costa's emergency services manager, said he is eager to see how the system works and that the county could adopt it, or a similar Web-based registry, if San Ramon Valley's system answers concerns.
Among the biggest are privacy and popularity.
Some critics and emergency officials are dubious. Police and firefighters could be too taxed in a catastrophe to attend to lists of vulnerable people, and critics fear a voluntary registry may offer little more than false comfort. it's also possible a vulnerability road map could fall into criminal hands. And if power is out, how does the Internet company make its data available to 911 responders?
"In the wrong hands, that information is a hit list," said Ana-Marie Jones, executive director of the Oakland-based Collaborating Agencies Responding to Disasters, or CARD. "Some people may be willing to pay, but ... you will run into the thing you always run into -- the trust issue."
Recent attempts in San Ramon to catalogue the city's vulnerable residents met with leery distrust, and local officials acknowledge the challenge in promoting any kind of voluntary registry.
"For years we've been telling them, 'Don't part with that information. Keep it very close to your vest.' Now we're telling them, 'By the way, we want you to give that to us,'" said Greg Gilbert, Danville's director of emergency preparedness.
Price said the fire district has checked the company's background and is satisfied, initially, with its privacy policy. North, the company president, said SMART911 would mind the data and "only intentionally release it to 911 under the conditions the subscriber wants."
North said his use of the word "intentionally" was meant to account for Uncle Sam.
"If the feds come in and provide a court order saying we have to release information, we're going to fight it, but it's the feds," he said. "The people that are information paranoid are going to be information paranoid. ... Some people will sign up and some people won't."
The system is designed so residents can provide as much or as little detail as they want dispatchers to see, North said. Fire officials say they now log the same kind of data at no cost. But that saps resources, and their database is hopelessly outdated, said Price.
Residents "never send a letter saying, 'We don't have that oxygen tank anymore,' or 'We've moved on,'" Price said. "Keeping the data current is nearly impossible. Charging them money fixes that problem."
Price said the district hopes to subsidize the service for low-income families.
Danville and San Ramon may help promote the Web registry, and county emergency officials will watch closely, said Boyer, Contra Costa's emergency services manager.
"It's the Internet-age version of having a MedicAlert bracelet on your wrist," he said. "I don't want to say there's interest as much as there's curiosity. We haven't done anything like this around here before."
But privacy remains a major concern.
"You're getting some pretty critical information about people: their medical status, their locations. I would hate to be the owner of this information and through some accident it would get out," Boyer said. "You have to make it a semipublic system if you want people to log on and change their information. Whenever you let the good people in, the bad people will try, too."
San Francisco offers a free registry through its health department. Created after the 1989 Loma Prieta earthquake, it has 11,000 registrants. People can't register online, and that's purposeful.
The city wants them to sign the registration form to ensure that family members don't divulge others' information without their consent. They also must sign a waiver stating that registration comes with no guarantees, said Dr. John Brown, medical director for the San Francisco Emergency Medical Services agency, which manages the registry.
"This is a triage tool. As soon as resources come available, they will be prioritized to you first, but we can't guarantee (a quick response),"said Brown. "It's not a panacea."
Some agencies have rejected such registries for fear of a lawsuit, said John Bateson, executive director of the Contra Costa Crisis Center. The nonprofit agency is the county provider of 211 phone service, which is planned as a key resource for vital information and referrals in a disaster.
"If someone registers that they need a wheelchair in a disaster, they need a ride and they don't get that ride, they can sue," he said. "Various county people have decided the liability is too great."
Indeed, critics of disaster registries say they could do more harm than good.
"When you put people with disabilities on a registry, what are you promising you're going to do for them during a disaster? It's really hard to nail down what you are assuring them," said Richard Devylder, deputy director of the state Department of Rehabilitation, which helps people with disabilities find work.
"Is it a false sense of security that will divert people from actually preparing themselves?"
Devylder instead suggests including disability services -- special vehicles, for instance -- in the emergency management system.
Jones, of CARD, said churches, neighborhood and nonprofit groups and caretakers form the best line of defense for the frail and disabled.
"A person coming in to do feeding and toileting, there's a high level of trust there," said Jones. "It's always the in-home health care agencies that have been able to tell the responders exactly where those people are. The same story pops up in every disaster."
Many of those agencies keep their own rosters of the medically fragile and housebound that workers can view in an emergency.
Meals on Wheels of Contra Costa, for instance, keeps client lists at local offices and senior centers, said operations manager Liz Vargas. PG&E keeps data on customers on ventilators or other plug-in medical devices, to ensure their service is restored first after a blackout.
And county health officials maintain a list of more than 1,000 recipients of in-home health services. Kept in closely held binders, the list runs 70 pages long and includes names and numbers for clients, language, if they use a wheelchair and an assessment of their level of disability.
"These are folks who may not be with-it enough to even have the ability to register," said Dan Guerra, emergency preparedness manager for county Health Services. "If you were to take all of these different types of services, they could all add up to something."
Local officials say they recognize the limitations of the proposed Web registry, and that many questions remain. Could people register off-line? What about non-English speakers? What should residents expect for their $2.20 a month -- valet emergency response?
Not likely, said Boyer, the county emergency services manager.
"Imagine it's a wildland fire, you're a fireman, your rig pulls up to a cul-de-sac. There are 12 homes, two of them are registered. You only have enough time to save people in four homes. Because these two are registered, do you go to them first?
"They're going to work from house to house and get to who they can. (A listing) doesn't guarantee a better level of service. It means better informed service."
Reach John Simerman at 925-943-8072 or e-mail

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