Appendix D: Institutional Records Systems

Institutional records systems are "check in/check out" systems that contain the current location of persons.  Hospitals, nursing homes, home health agencies, homeless shelters, and virtually any other facility that houses (or cares for) persons use automated systems to keep track of who is in their facility.  The purpose of such information in health care facilities is for correct billing.  As noted earlier in this report, the proposed National System would obtain patient and evacuee location and health status data from local, State, and Federal feeder systems, including tracking systems (Appendix C) and institutional records systems. 

Because institutional record systems are so ubiquitous, having a truly comprehensive National System—which the project team was instructed to consider—depends on eventually linking a wide variety of types of institutional records systems to the National System.  The project team therefore invested considerable resources researching these systems.  Specifically, for each type of location, facility, or organization that houses or cares for a potential evacuee, we tried to obtain:

• Basic typology and definitions (e.g., public vs. private, local vs. county vs. State-operated, range in size and number).
• Perceived benefits of participating in the National System, for example:
  • (e.g., Do these locations control the transportation resources that would be needed to evacuate their clients? 
  • Do these locations control similar facilities to which their clients will be moved in the event of an evacuation?
  • Have there been drills or actual evacuations that have demonstrated the need for a more systematic approach to client movement and tracking?)
• Privacy and confidentiality issues (e.g., are there privacy and confidentiality laws or regulations that must be overcome if the location is to share client-level data with the National System?)
• Existing "check in" and "check out" procedures on to which the National System can piggyback (e.g., what are they and do they vary across locations within separate organizations?)
• Existing information technology (IT) systems with data on all clients at the location, for example:
  • How prevalent are "census" IT systems?
  • Is the market for these systems dominated by one or two big vendors, lots of vendors, or by home-grown systems?
  • Is there a standard set of data that all of these systems must be able to produce or extract?
  • Is there already an existing Federal data aggregation program across multiple locations?
  • Are the electronic data elements collected at these locations generally the same across locations or do they vary widely?

Below, we first summarize our findings across all the location types and provide details about each location type.  It should be noted that the purpose of this review is to highlight the primary examples of existing systems, rather than provide a comprehensive directory of all existing systems.

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Summary

The following table summarizes the types of locations or organizations that have person-level record systems that could serve as feeder systems to the National System. 

Patient/Evacuee Location	Attributes	Control
Hospitals	All electronic Registration—current Discharges—current	Maintained at each hospital, some maintained by IT vendors
Nursing Homes	Most electronic Registration—current Discharges—current	Maintained at each Nursing Home (NH), some maintained by IT vendors; reported to States and then Centers for Medicare & Medicaid Services (CMS) in Online Survey, Certification, and Reporting (OSCAR) database (lag)
Homebound Patients	Most electronic Discharges—current	Maintained at each home health service (HHS); reported to CMS via Organization for the Advancement of Structured Information Standards (OASIS) database (lag)
Homeless Shelters	Paper and electronic Registration—current Departures—incomplete	Maintained at each shelter, reported to States and Department of Housing and Urban Development (HUD) quarterly
Disaster Shelters	Paper and electronic Registration—delayed in very large evacuations Departures—incomplete	Red Cross/Federal Emergency Management Administration (FEMA) National Disaster Shelter System
Prisons & Jails	Most electronic Registration—current Departures—current	Maintained at each jail & prison with little reporting/sharing; Federal BoP uses a centralized database
Other lists of people needing evacuation assistance (hotels, pre-evacuation registries,  MedicAlert clients, vocational rehabilitation clients, special assistance lists)	Paper and electronic	Maintained by each service organization/firm

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Hospitals

There are 5,756 hospitals registered in the U.S. Data from the most recent Healthcare Information and Management Systems Society (HIMSS) survey indicate that almost all hospitals use automated patient registration systems.⁴⁹ Hospitals routinely collect identifying and billing information, including:

• Name.
• Address.
• Date of birth.
• Social Security number.
• Payor/insurance(s) (if any) and insurance policy number(s).
• Family contacts/next of kin/emergency contact/guarantor.
• Employer.
• Socio-demographics that vary by institution (e.g., race/ethnicity, family income, primary language spoken).
• Referring physician name.
• Primary/presenting diagnosis (not universal).
• Unique patient ID.

Patients presenting at a hospital emergency department (ED) are logged in but are not considered "admitted" to the hospital unless they will be staying 24 hours or longer. Some hospitals' ED systems simply indicate that the patient is present, and contain no electronic information about presenting diagnosis, medications, etc.  All patients, whether admitted or seen in the ED, usually receive an I.D. bracelet which they wear until they are discharged.  When they are transferred to another facility, this bracelet is replaced by another issued at the new facility.

Similarly, hospitals collect electronic information about discharged patients, including their discharge destination (nursing home, home, etc.).  The discharge process may be handled by a distinct discharge department that enters the data or may be centralized.  Some (but not all) discharge information systems contain/report detailed data (medications, etc.) that are helpful to the next institution caring for the patient

Since the admission and discharge elements of patient tracking already are automated at almost all U.S. hospitals, those all could (in theory) become feeder systems for a national patient tracking system.

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Nursing Homes

There are approximately 1.6 million nursing home residents in 18,000 nursing homes in the U.S.; 90% of nursing home residents are elderly (65 and over).⁵⁰

Admission (check-in) and discharge (check-out) procedures are similar across all Medicare and Medicaid nursing homes.  A social worker or director of nursing reviews an admissions agreement with the patient or their proxy/guardian, including review of resident's rights and financial information.  If the patient is transferring from a hospital, medical records and medications are faxed from the hospital and medical charts are created (often paper).  Information is entered into the nursing home billing system, including:

• Name.
• Date of birth.
• Social Security number.
• Payor/insurance (if any) and insurance policy number.
• Family contacts/next of kin/emergency contact.
• Demographics.
• Physician name.
• Diagnosis.

Some facilities attach identification bracelets to their patients and others do not (unless the patients frequently wander). 

Nursing home electronic billing systems in most facilities generate an internal daily census report at midnight each night, which includes (at a minimum): patient names and payor source, room number, medical record number, age, physician, and diagnoses.  This census report could be modified to become data fed to a national patient tracking system.  Nursing home clinical data systems contain more detailed data but are not as timely.

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Home Health

There are about 7,530 home health agencies (HHAs) and 1.4 million home health care patients in the United States.  HHAs provide part-time care to patients in their home.  In a major disaster, many home health patients are not able to safely self-evacuate. 

Home health patients are referred to an agency from a physician, hospital, or other provider and the HHA decides whether they can provide the services the patient needs.  Upon admission to the HHA, a nurse consults with physicians to create a written plan of care.  Data elements include:

• Name.
• Date of birth.
• Social Security number.
• Payor/insurance (if any) and insurance policy number.
• Family contacts/next of kin/emergency contact.
• Demographics.
• Physician name.
• Physical capabilities and assistance needed with activities of daily living.
• Care regimen and duration.

This intake information could be considered a census of patients for each HHA, and could be adapted to feed into a national patient tracking system. 

More detailed and progressive clinical information is collected as the care episode proceeds, and reported (starting at 5 days from intake) to CMS via the OSCAR data system. The data contained in this system are not precisely current, but are close, and would include more information about evacuation needs (equipment, medications, transportation, etc.).  This system could also be modified to feed data to a national patient tracking system.

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Shelters

Shelters are classified as Disaster Shelters (American Red Cross, FEMA, Federal Medical Shelters, etc.), and Homeless Shelters (overnight or "emergency," transitional and permanent housing for the homeless). 

Disaster Shelter Systems.  Persons in disaster shelters, and most of those in homeless overnight/emergency shelters, will be unable to self-evacuate.  Many disaster shelters use the Coordinated Assistance Network (CAN) to manage client-level data and coordinate services and benefits during large-scale inter-jurisdictional disasters.  The CAN data include identifying information that can help track individuals and reunite families.  CAN also contains information about individuals' other social service needs, since some may not have homes, jobs, or schools to return to after a disaster. CAN and the National Shelter System absorb data from tens of thousands of disaster shelters, and could potentially feed these data to a national patient and evacuee tracking system, although privacy issues would likely preclude doing this.

The American Red Cross (ARC) is currently developing a National Shelter System for use in all its disaster shelters. To date, development has focused primarily on obtaining shelter capacity data—go to   Appendix E, Resource Availability Systems.  The ARC's long term goals include adding a client registration component to this system; as noted in Section 3, such a system would make an ideal feeder system to the National System. 

Homeless Shelter Data Systems. Homeless shelters each use a version of the homeless management information system (HMIS), as they must report data quarterly and annually to their States and then to the Department of Housing and Urban Development (HUD).  The data collected include:

• Name.
• Date of birth.
• Social Security number.
• Unique ID.
• Ethnicity and race.
• Gender.
• Disabling conditions.
• Program entry/exit dates.

These data are collected on paper in most homeless shelters, and entered into electronic format at a later data—sometimes days or weeks later—and are then aggregated and reported to funding and oversight authorities.  These data are probably not timely, accurate, and automated enough to be fed to a national patient and evacuee tracking system during an emergency.

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Prisons and Jails

Jails and prisons differ in the type of inmates they hold, their daily and annual population, and the manner in which they are operated.  People with all types of medical conditions and at all levels of ambulatory ability are arrested and incarcerated in jails and prisons.  Prisons maintain very accurate (census) records of who is in each facility, and any movement of inmates from one facility to another. In many cases, however, these data are not automated; even when they are automated, they are often only accessible within a facility in legacy information systems and cannot be exported/shared.  The Federal Bureau of Prisons (BoP) has a system-wide database, but within States and counties there is little consistency.  In addition, many prisons have modest computing capabilities and internet access.  Beyond the FBoP there are probably few systems that could feed data to a national tracking system, and indeed prisons and jails prefer to handle evacuations on their own, due to security considerations, rather than relying on assistance from civilian entities.

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Other People Needing Evacuation Assistance

The need for evacuation assistance and tracking of non-institutionalized persons could be substantial; an official from the Department on Disability in Los Angeles estimates that 25 to 30 percent of the general population will need evacuation assistance.⁵¹ 

• Hotel and resort guests: Hotels have accurate lists of all registered guests; these lists are often maintained in a central database for hotel chains and could be fed into a national patient and evacuee tracking system. 
• Evacuation pre-registration:  Many areas in storm zones offer pre-evacuation registries for residents who know they will need assistance.  During an evacuation, emergency managers will attempt to verify whether help is indeed needed, and send emergency responders to assist.  Ventilator-dependent (and other electricity-dependent) patients, those who are bed-bound or wheelchair-bound and without any transportation assistance, and anyone else who knows that they will not be able to self-evacuate safely, can pre-register.  According to a county emergency manager in Florida (which mandates operation of such voluntary registries in every county), most of these registries are small and are not thoroughly automated.  It is not clear whether they could feed data to a national tracking system.
• Local special assistance lists: Many fire departments offer disabled persons who might need to be rescued (e.g., in a fire) the opportunity to be listed, so that responders are aware that a disabled person lives in a house.  In addition to those who are mobility impaired, persons with communication impairment (deaf, mute) may voluntarily add their names to such a list.  These lists are usually not automated.
• MedicAlert and other emergency pager systems have lists of clients who might require assistance, especially in a rapid evacuation.  Client lists are likely available electronically, but based on these lists it would not be possible to determine which clients have self-evacuated and which need assistance.
• Vocational rehabilitation and independent living centers have lists of persons receiving personal home aide (not home health) services and will likely know which require mobility assistance to evacuate. 

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49. Annual Report of the U.S. Hospital IT Market; 2004 complete and 2005 first quarter data. HIMSS Analytics.

50. Centers for Disease Control and Prevention, National Nursing Home Survey, 1999.

51. 2006 personal communication with Angela Kaufman, Project Coordinator, Los Angeles Department on Disability.

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