AIDS and Behavior

, Volume 23, Supplement 1, pp 83–93 | Cite as

An End-User Participatory Approach to Collaboratively Refine HIV Care Data, The New York State Experience

  • Carol-Ann SwainEmail author
  • Steven Sawicki
  • Diane Addison
  • Benjamin Katz
  • Kelly Piersanti
  • Abigail Baim-Lance
  • Daniel Gordon
  • Bridget J. Anderson
  • Denis Nash
  • Clemens Steinbock
  • Bruce Agins
Original Paper


Existing data dissemination structures primarily rely on top-down approaches. Unless designed with the end user in mind, this may impair data-driven clinical improvements to Human Immunodeficiency Virus (HIV) prevention and care. In this study, we implemented a data visualization activity to create region-specific data presentations collaboratively with HIV providers, consumers of HIV care, and New York State (NYS) Department of Health AIDS Institute staff for use in local HIV care decision-making. Data from the NYS HIV Surveillance Registry (2009–2013) and HIV care facilities (2010–2015) participating in a Health Resources and Services Administration (HRSA) Systems Linkages and Access to Care project were used. Each data package incorporated visuals for: linkage to HIV care, retention in care and HIV viral suppression. End-users were vocal about their data needs and their capacity to interpret public health data. This experience suggests that data dissemination strategies should incorporate input from the end user to improve comprehension and optimize HIV care.


HIV Participatory process End-user Data visualization 



The authors thank members of the New York Links (NYLinks) team, the New York State Consumer Advisory Committee and NYLinks member organizations. In particular, we thank Erie County Medical Center, Evergreen Health, Trillium Health, Monroe County Department of Health, Catholic Charities, Strong Memorial Hospital, Anthony L. Jordan Health Center, Mount Sinai Hospital, Harlem Hospital Center, St. John’s Riverside Hospital and North Shore Long Island Jewish Health System. We also thank Allison Krug, MPH (Artemis Biomedical Communications, LLC), Travis O’Donnell and John Helmeset for their editorial contributions.


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 H97HA22693, Special Projects of National Significance, Systems Linkages and Access to Care for Populations at High Risk of HIV Infection Initiative (CFDA) no. 93.928. The 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. Support was also provided by the Centers for Disease Control and Prevention 13-1302, National HIV Surveillance System U62PS003966, and the AIDS Institute, New York State Department of Health and the New York City Department of Health and Mental Hygiene.

Compliance with Ethical Standards

Conflict of interest

The authors declare that they have no conflict of interest.

Ethical Approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed Consent

This study received a determination of Exempt status (exempt category #5) according to federal regulations, under 45 CFR 46.101(b). For the qualitative assessment, informed consent was obtained from all implementation staff included in the study.


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Copyright information

© Springer Science+Business Media, LLC, part of Springer Nature 2018

Authors and Affiliations

  • Carol-Ann Swain
    • 1
    • 4
    Email author
  • Steven Sawicki
    • 2
  • Diane Addison
    • 3
  • Benjamin Katz
    • 3
  • Kelly Piersanti
    • 3
  • Abigail Baim-Lance
    • 3
  • Daniel Gordon
    • 1
  • Bridget J. Anderson
    • 1
  • Denis Nash
    • 3
  • Clemens Steinbock
    • 2
  • Bruce Agins
    • 2
  1. 1.Bureau of HIV/AIDS EpidemiologyNew York State Department of HealthAlbanyUSA
  2. 2.Office of the Medical DirectorNew York State Department of HealthNew YorkUSA
  3. 3.Institute for Implementation Science in Population HealthCity University of New YorkNew YorkUSA
  4. 4.Bureau of HIV/AIDS Epidemiology, Division of Epidemiology, Evaluation and Partner ServicesNew York State Department of HealthAlbanyUSA

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