Analysis of State Actions Regarding Donor Registries. Maintenance and Technical Aspects of Registries

01/04/2000

A great degree of disparity currently exists regarding the developmental stages of state donor registries. While a small number of states have a well-developed registry, most states are in only a rudimentary stage of development of a computer-based registry database. The first step in developing a state donor registry is determining where the database is to be housed. Registries may be housed in the OPO, a division of motor vehicles, a state department of health, the state police, or a managed care organization. Compatibility between the various entities that will utilize the registry must be established as the second step to developing a registry – compatibility both in terms of how the information is stored in the database and the interfacing of hardware and software used to maintain the database. Finally, mechanisms must exist for keeping the database up-to-date, including purging those individuals that pass away or opt out, and entering new individuals that have joined.

Recent state legislative efforts that have addressed various parts of this process are outlined below. One innovative effort made by a small number of states is to include images of donor documentation in the registry database, which provides a visual representation of the potential donor’s handwriting, a potentially effective tool in helping next of kin to appreciate their loved one’s wishes. Other efforts include the following.

  • The Arkansas State Revenue Department computer system downloads driver’s license information on a monthly basis to the state donor registry.
  • In California, the registry enrollment form is posted on the state’s health and human services Web site.
  • Florida law allows funds from a procurement trust fund to be allocated towards helping to maintain the state registry. The state’s registry contains images of donor wills and signatures.
  • Georgia has an advanced technological registry that allows data to be entered via a computer keyboard, magnetic tape, or document scanners.
  • A field is provided in the Illinois driver’s license database which links to the state registry database.
  • The Louisiana registry database allows individuals to selectively designate specific organs and tissues to be donated and search for information about blood and marrow donation.
  • The Michigan registry includes a captured image of signed donor cards.
  • The Missouri Department of Health maintains the state’s registry.
  • The Texas Living Bank National Registry has contracted with a private firm to develop and maintain its computerized registry database.