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Methodology for linking Ryan White HIV/AIDS Program Services Report (RSR) client level data over multiple years.

Julia Zhu1, Miranda Fanning1, Laura Sheehan2

  • 1Health Resources and Services Administration, HIV/AIDS Bureau, Division of Policy and Data, Rockville, Maryland, United States of America.

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Summary

A new method links de-identified HIV/AIDS health services data across years, enabling better tracking of patient outcomes and program effectiveness for the Ryan White HIV/AIDS Program (RWHAP). This improves analysis of viral suppression and care retention for vulnerable populations.

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Area of Science:

  • Public Health
  • Health Services Research
  • Data Linkage Methodologies

Background:

  • The Ryan White HIV/AIDS Program (RWHAP) provides essential health services to over half a million low-income individuals with HIV in the U.S.
  • The RWHAP Services Report (RSR) data is crucial for monitoring progress towards the National HIV/AIDS Strategy.
  • Current de-identified RSR data limits longitudinal analysis of client outcomes across multiple years.

Purpose of the Study:

  • To develop and validate a method for linking client-level RSR data across multiple reporting years.
  • To overcome limitations of de-identified data for longitudinal research.
  • To enhance the Health Resources and Services Administration's HIV/AIDS Bureau (HRSA HAB) capacity for evaluating RWHAP outcomes.

Main Methods:

  • Applied a Fellegi-Sunter (F-S) linkage model using client demographics and provider geographic locations.
  • Utilized seven years (2010-2016) of RSR data for linkage.
  • Validated the methodology through internal sample review and external validation against clinical records.

Main Results:

  • Achieved a 70-80% year-to-year client carry-over rate over seven RSR years.
  • Demonstrated a 96% linkage ratio from internal sample review.
  • Reported 79.9-94.2% provider network client carry-over rate per year from external validation.

Conclusions:

  • The developed methodology successfully links de-identified RSR client records across years, addressing a critical data analysis gap.
  • Longitudinal linkage enables improved evaluation of viral suppression patterns and service utilization over time for multi-year clients.
  • This approach supports enhanced understanding of RWHAP impact and progress towards national HIV/AIDS goals.