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“Closing the Loop” Developing State-Level Data Sharing Interventions to Promote Optimum Outcomes Along the HIV Continuum of Care

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Abstract

This manuscript describes the experiences of three state departments of health (SDoH) that successfully launched data sharing interventions involving surveillance and/or patient data collected in clinics to improve care outcomes among people living with HIV. We examined 58 key informant interviews, gathered at two time points, to describe the development and implementation of data sharing interventions. We identified three common themes across states’ experiences: creating standard practices, fostering interoperability, and negotiating the policy environment. Projects were successful when state teams adapted to changing circumstances and were committed to a consistent communication process. Once implemented, the interventions streamlined processes to promote linkage and retention in care among low-income populations living with HIV. Despite using routinely collected data, key informants emphasized the labor-intensive process to develop and sustain the interventions. Lessons learned from these three state experiences can help inform best practices for other SDoH that are considering launching similar interventions.

Resumen

Este manuscrito describe las experiencias de tres departamentos estatales de salud (SDoH, por su sigla en inglés) que implementaron con éxito intervenciones de intercambio de datos que incluían datos de vigilancia y/o de pacientes recogidos en clínicas para mejorar los resultados médicos para personas que viven con el VIH. Analizamos 58 entrevistas con informantes claves, conducidas en dos etapas, para describir el desarrollo y la implementación de intervenciones de intercambio de datos. Identificamos tres temas comunes en las experiencias de los estados: la creación de prácticas estándar, el fomento de la interoperabilidad y la negociación del entorno de políticas. Los proyectos tuvieron éxito cuando los equipos estatales se adaptaron a circunstancias cambiantes y se comprometieron en un proceso de comunicación constante. Una vez implementadas, las intervenciones racionalizaron los procesos para promover el vínculo y la retención en la atención médica en poblaciones de bajos ingresos que viven con el VIH. A pesar de utilizar datos recopilados rutinariamente, los informantes clave enfatizaron el proceso de trabajo intensivo para desarrollar y sostener las intervenciones. Las lecciones aprendidas de estas tres experiencias estatales pueden ayudar a informar mejores prácticas para otros SDoH que estén considerando iniciar intervenciones similares.

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Acknowledgements

This project was supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under Grant Number U90HA22702 for the Systems Linkages and Access to Care for Populations at High Risk for HIV Infection Initiative Evaluation and Technical Assistance Center. This information or content and conclusions are those of the authors and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.

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Authors and Affiliations

  1. Division of Prevention Science, Center for AIDS Prevention Studies, University of California, San Francisco, UCSF Mail Code 0886, 550 16th Street, 3rd Floor, San Francisco, CA, 94158, USA

    Sophia Zamudio-Haas, Kimberly A. Koester, Andres Maiorana, Shannon M. Fuller, Wayne T. Steward & Janet J. Myers

  2. Department of Public Health, New Orleans, LA, USA

    DeAnn Gruber

  3. Department of Public Health, Boston, MA, USA

    J. Christian Hauge

  4. Center for Health Policy and Inequalities Research, Duke University, Durham, NC, USA

    Heather E. Parnell

  5. Institute for Global Health and Infectious Diseases, University of North Carolina – Chapel Hill, Chapel Hill, NC, 27599, USA

    Evelyn Byrd Quinlivan

Authors
  1. Sophia Zamudio-Haas
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  2. Kimberly A. Koester
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  3. Andres Maiorana
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  4. Shannon M. Fuller
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  5. Wayne T. Steward
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  6. DeAnn Gruber
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  7. J. Christian Hauge
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  8. Heather E. Parnell
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  9. Evelyn Byrd Quinlivan
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  10. Janet J. Myers
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Correspondence to Sophia Zamudio-Haas.

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The authors declare that they have no conflict of interest.

Ethical Approval

All procedures involving human participants were in accordance with the ethical standards for the institutional review board and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

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Informed consent was obtained from all individual participants included in the study. No personal identifying information is included in the manuscript.

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Zamudio-Haas, S., Koester, K.A., Maiorana, A. et al. “Closing the Loop” Developing State-Level Data Sharing Interventions to Promote Optimum Outcomes Along the HIV Continuum of Care. AIDS Behav 23 (Suppl 1), 70–77 (2019). https://doi.org/10.1007/s10461-018-2142-1

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  • DOI: https://doi.org/10.1007/s10461-018-2142-1

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