Establish a Registry of HIV Patients

A system that records all relevant patient care information is often referred to as a "registry." Providers can use the registry to record critical elements of the care plan, produce quick care summaries at the time of a visit, and enter data to alter the care plan as needed. A patient registry is most useful when patient data are available to the provider at the point of the patient visit, when decision support is most needed.
  1. Choose or develop an electronic or manual registry.

    Electronic Method: Choose a computer application that allows for flexible data handling and reporting. Make sure the application makes it easy to get patient information into and out of the system. It should also be easy to transfer information to and from other systems (e.g., billing, lab, appointments), or even have a direct interface with these systems.

    Manual Method: Develop a card file or notebook that can be used to track patient information.
  2. Decide on what data to include in the registry, based on the essential elements of good HIV care. Consider including demographics, clinical data (HIV-specific labs and medications), provider name, and referrals. (See Decision Support.) Note that items, such as PPD testing over the last six months, may be added for single purpose assessments and then dropped.
  3. Use a template to document how the data elements were established so that new staff can replicate the process.
  4. Build the registry by using an existing information system to identify the majority of patients with HIV/AIDS. For example, add names from billing data or the ICD-9 code list for last calendar year. Add names as new patients join the clinic.
  5. Share the list of HIV/AIDS patients with the practice team to eliminate miscodes. Have team "clean" the list by noting patients who have died. Some groups perform a chart audit to clean the registry regularly.
  6. Document the process of updating the registry with new patients and of identifying patients as "inactive."



  • Include staff members from all positions in the planning of the registry (e.g., providers, information systems administrators, case managers, etc.).
  • Choose software that can capture needed data from existing computer systems and is within budget.
  • Visit a center with a well-implemented patient registry.
  • An automated medical record is NOT a requirement of a good registry. The registry is a repository of essential care elements based on a care guideline, and does not need to include ALL care elements.
  • Identify team members with good computer skills to manage the registry and train others how to use it. Ensure adequate cross-training.
  • Prior to developing the registry, first list all elements that need to be included. Involve as many individuals as possible in generating the list, and then ask everyone involved to prioritize it. Again a caution: It is important to remember that this is NOT an electronic medical record and ALL information is not needed. Data for data’s sake will be overkill and will frustrate the people trying to use the registry. Start only with what is essential. Make sure that your registry will also be useful for:
    • Funding reports
    • Quality improvement projects
    • Provider feedback
    • Grant applications
    • Financial management
  • Use precise and consistent definitions for each key measure. Make sure you capture information required by accrediting bodies or managed care organizations. For example, NCQA requires use of mortality rates, number of losses to follow-up, hospitalization rates, incidence of AIDS-defining illnesses, and outcomes of CD4 and viral load testing.
  • Start small, but make sure you have the capability to add new data elements as guidelines change and providers become more sophisticated. Don’t overwhelm people with too much information at first.
  • Keep the template simple and easy to use.
  • Keep a notebook near the data entry point with the documentation of how the data elements were established.
  • In the provider column, use a "code" to indicate if the patient is inactive; the code can be changed when the patient is followed up.
  • Work with information systems experts to develop ways to update the registry monthly, based on billing, pharmacy, and lab data. For example, one team developed a Registry Workgroup that consisted of the team leader, IS, pharmacy, lab, medical records, and front office to identify available data and develop a written process for how the data would flow in their organization.
  • Review the registry for accuracy. If too many people with HIV/AIDS disease are missed, providers won’t trust the registry. Test the registry early and on a regular basis to maintain integrity of the data.
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