What is a registry?

Registries are developed at the community, state, regional, national, and international level. Some are mandated by legislation.  Some are commercial. Some have existed for many years, while others appear and disappear, often due to competing funding and labor force priorities.

What is in a registry?

• A registry, according to the Merriam Webster dictionary, is defined as a place where official records are kept, or a book or system for keeping an official record of items.  
• Registry data items can be people, e.g. volunteers, on-call nurses, people with access and functional needs.
• Registry data items can be things, e.g. motor vehicles, drugs, medical devices.  
• Registries are used to identify climatic conditions and trends, clinical data, effective programs, wedding gifts one wants, etc.
• Registries of tangible, non-personnel resources may be called inventories or stockpiles. 

Registries of people have many variations, including:

• Format used can range from an address list kept in a paper file, to sophisticated GIS oriented systems.  
• Registries can have a spatial element -- where-- the location of the person or resource. 
• And a temporal element -- when is the person or resource at that location. 
• Keeping the where’s and when’s of registries, inventories, and resource lists up to date can be critical to their usefulness.
• Registry data can be submitted voluntarily, for example by people willing to assist or be assisted in an emergency. 
• Some registries are involuntary, for example sex offender registries
• Some registries have mandated reporting requirements, e.g. state registries for identifying trauma patients or people with HIV. 

Registries are developed for a broad range of purposes.

• Some are developed and maintained by service providers, public or private, and focus on care coordination and case management. 
• Registries can be of value in identifying currently available resources, e.g. personal assistance providers, nurses available through a service agency.
• Registries play an important role in epidemiological research.
• There are data oriented chronic disease registries, e.g. people with cancer, diabetes, asthma.
• There are needs oriented registries designed to match people with resources they are seeking, e.g. organ transplant waiting list registries

Emergency management registries

• Though we are focusing on people with disabilities and other access and functional needs, it is important to remember that the word registry is also used for other types of emergency management tools.
• The term “registry” is not included in the National Response Framework glossary. 
• In practice, the word “registry” is used to describe different tools used in a wide variety of situations, from planning to evacuation. 

Differences between a resource registry and a needs oriented registry

• Years of prior experience with using resource registries likely contribute to the assumption that operationalizing an access and functional needs registry will not be much different.
• Unless the underlying differences between management and use of resource registry and a needs registry are identified and understood, it is likely to lead to underestimating the complexity of managing a needs oriented registry.

Emergency management registries have typically been used to manage resources (personnel, skills, and services, etc.)

• Systems are in place to keep resource registries complete and up to date. 
• Adding additional items to the registry would increase available resources. 
• There are local and state registries of individuals prepared to volunteer during emergencies. These registries include Citizen Emergency Response Team (CERT), Citizen Core, Voluntary Organizations Active in Disasters (VOADs), and health care and human service personnel such as the Medical Reserve Corp. 
• Nationally there is the Emergency Systems for Advance Registration of Volunteer Health Professionals (ESAR-VHP).
• There is also a national Disaster Response Registry (Central Contractor Registration CCR) for contractors interested in performing debris removal, distribution of supplies, reconstruction and other disaster or emergency relief activities. It is now called System for Award Management (SAM).

Registries of people who may need assistance, e.g. functional needs registries are very different than resource inventories, and have to be managed and maintained differently.

• It must be assumed that a needs oriented registry is incomplete, and includes only a small percentage of the population (e.g., the University of Texas School of Public Health at Brownsville estimated that 350,000 people, about 1 in every 4  Rio Grande Valley residents require transportation assistance for evacuation, but only 11,000 have registered. (Janes, J.)  
• Adding additional “items” (people) increases the need for response resources, but does not increase the available resources.  
• According to the CDC:  “In the context of emergency preparedness, the purpose of a registry is to identify before an event occurs those individuals who may need additional assistance before, during, or after an emergency. Registries can be based on the specific type of help a person needs (e.g., medical, transportation, or other special needs), or they can be used for the broader purpose of identifying any person who might need any type of help during an emergency.”
• These range from registries which might assist the local emergency responders to be aware of a person’s presence at a specific location, to a community assessment tool, or an integrated database maintained for routine use in 911 emergency response calls  
• Registries are intended to offer a variety of emergency assistance typically focused on one or more of the following:  evacuation (from a building or a community), sheltering ("shelter-in-place" or getting to a general population or medical shelter during and/or immediately after an event ) and/or after-event recovery assistance.  

Sometimes “lists of lists” are compiled from administrative service records of other agencies.

• Though not called registries, data in government beneficiary files (recipients of public benefits and services such as Medicaid, Developmental Disabilities, Aging, Personal Assistance, Behavioral Health, etc.)  databases are sometimes considered usable for purposes beyond the original intent, for example using a homecare agency’s client list for emergency evacuation or emergency sheltering purposes. 
• Many of the people in these databases are likely to be the part of the target population group for emergency registries. 
• When this “list of lists: approach is used, redundancy will occur when an individual is on the service lists of multiple agencies.
• People who are not clients of any service provider will be overlooked.

Technology based approaches

Personal emergency response systems (PERS)

• PERS systems are commercial products focused on emergency response, they are not used for emergency planning.  
• In essence, PERS are registries that a purchaser pays a fee to be included in.
• These commercial systems coordinate “emergency response” to individuals who pay for the service and security provided by an on-call response system. 
• They link an individual to the resources needed to respond to an individual emergency – e.g. falls in the home, car crashes.  OnStar advertises that it will stay with you (by voice) until help arrives. 
• Commercial products like LifeAlert, LifeFone, Lifeline are evolving from home based “I’ve fallen and I can’t get up” pendant, to mobile cell phone based systems like 5Star Urgent response and Mobile Help    
• The vehicle-based systems like OnStar SOS  and Sync 911Assist are also tied to mobile phone technology.

Emerging technology promotes integrated, non-exclusionary solutions 

• Technology driven systems like Smart911 and SmartPrepare assume the functions of a registry, but instead of registering people, they register the phones of anyone who has created a safety profile.
• This approach is available to anyone in the community, with no need to segregate individuals based on perceived needs.
• The user created safety profile is available only to public 911emergency call center personnel when the registered phone calls 911.  
• This system can also collect data on resources available in the community; e.g. an individual creating a personal safety profile could include skills or tools they were willing to volunteer in an emergency.
• Smart phone apps are also available which perform some of these functions.
• This non-exclusionary approach is not unique. The U.S. State Department has a voluntary registry for travelers outside the US. Smart Traveler Enrollment Program (STEP) is “a free service provided by the U.S. Government to U.S. citizens who are traveling to, or living in, a foreign country. STEP allows you to enter information about your upcoming trip abroad so that the Department of State can better assist you in an emergency.” 

Multiple perspectives on what a registry is (add link to the opinions page)

What the registry is, is one of the most essential questions in communicating about the registry with potential registrants, the emergency management community, and policymakers.

• From a voluntary registrant’s perspective, an emergency registry is a tool for managing personal risk.  And provides a safety net.  
• From a responder’s perspective, a registry is a tool for locating a person in danger, and connecting them with needed resources.
• The fundamental dilemma in registry effectiveness is the relationship between registrant expectation and responder capacity.  Hazard timing, resources, scale, and type of warning all influence that relationship. 

Registry expectations

• Because of the multi-disciplinary nature of the people and agencies involved with emergency management, there are different expectations and sometimes competing priorities. 
• It is essential for all involved to agree on what the registry is, including expected outcomes for using a registry tool, the protocols for achieving these outcomes; and how the registry tool integrates with other parts of the emergency management system. 
• At a minimum, this includes emergency managers, planners, and responders for different types and scales of events; public health; potential registrants; resource organizations and services, e.g. transit agencies.
• Responders expect that using a registry will improve their response effectiveness. 
• When a registry is viewed from the registrant's perspective, the first questions would be:  What am I registering FOR?  What will it do for me?  What can I expect? 
• PERS: Using one of the commercial personal emergency response systems the subscriber knows what to expect. They know that the PERS service personnel are not coming, but that someone will stay on the line with them until summoned help arrives. The subscriber is willing to pay a subscription fee to get assistance in contacting people who can help get responders to help them when assistance is needed. In a medium to large scale event, the call service probably would be able to tell them that assistance was not going to be available (e.g. the local jurisdiction’s call center is overloaded), and subscribers would know they were on their own. 
• STEP. Once registered, it would be prudent to compare what the registrant can expect with what the state department is capable of in various scenarios and scales.  As a traveler, what would you realistically expect the US Embassy or Consulate to do?  Your expectation in smaller scale emergencies -- a hostage situation on the Iranian border, hotel bombing in India (especially if you were a registered hotel guest) -- would likely be different than expecting to be rescued in a massive earthquake in northern Italy or a cyclone in the Philippines, especially if your itinerary was very flexible, and you had no fixed time or place that you were going to be in the region.

Moving beyond the question of What is a registry? 

• The challenge is to communicate the identified purpose of the registry clearly and consistently.
• The most important issue to clarify is the purpose of the access and functional needs registry. 
• What are registry developers trying to accomplish with this tool? Everything else flows from this issue.
• It is essential that all stakeholders agree. 
• If there are multiple objectives for using a registry, there are additional issues of whose perspective is driving its development.  E.g. a  registry viewed from a public health and emergency management planning perspective may look quite different, and have a different emphasis, than a registry viewed from the registrants and responders perspective. 

 

To explore the purpose of the registry, refer to the Registry Assessment Tool   

References

Janes, J. Number of people who need hurricane evacuation aid mostly unknown, The Monitor, 5/31/09,http://www.themonitor.com/articles/people-27122-aid-tony.html last accessed  03.3.14

 

Feedback:

 
This is a work in progress designed to evolve based on new learning and continuous feedback as new methods and tools become available.  You are encouraged to refine its content, by providing additional resources, as well as feedback about what works, doesn’t work, or needs work.  Please include “Registry feedback” in the subject line of your message to jik@pacbell.net