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

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

Abstract

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.

Keywords

HIV Participatory process End-user Data visualization 

Notes

Acknowledgements

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.

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.

References

  1. 1.
    Damschroder LJ, Aron DC, Keith RE, Kirsh SR, Alexander JA, Lowery JC. Fostering implementation of health services research findings into practice: a consolidated framework for advancing implementation science. Implement Sci. 2009;4:50.CrossRefPubMedPubMedCentralGoogle Scholar
  2. 2.
    McGuire WJ. Input and output variables currently promising for constructing persuasive communications. In: Rice R, Atkin C, editors. Public communication campaigns. 3rd ed. Thousand Oaks, CA: Sage; 2001. p. 22–48.CrossRefGoogle Scholar
  3. 3.
    Kuruvilla S, Mays N. Reorienting health-research communication. Lancet. 2005;366(9495):1416–8.CrossRefPubMedGoogle Scholar
  4. 4.
    Laycock A, Bailie J, Matthews V, Bailie R. Interactive dissemination: engaging stakeholders in the use of aggregated quality improvement data for system-wide change in Australian Indigenous primary health care. Front Public Health. 2016;4:84.CrossRefPubMedPubMedCentralGoogle Scholar
  5. 5.
    Waddell C. So much research evidence, so little dissemination and uptake: mixing the useful with the pleasing. Evid Ment Health. 2001;4(1):3–5.CrossRefGoogle Scholar
  6. 6.
    Wilson PM, Petticrew M, Calnan MW, Nazareth I. Disseminating research findings: what should researchers do? A systematic scoping review of conceptual frameworks. Implement Sci. 2010;5:91.CrossRefPubMedPubMedCentralGoogle Scholar
  7. 7.
    Shneiderman BPC, Hesse BW. Improving healthcare with interactive visualization. Computer. 2013;46(5):58–66.CrossRefGoogle Scholar
  8. 8.
    Jacobson N, Butterill D, Goering P. Development of a framework for knowledge translation: understanding user context. J Health Serv Res Policy. 2003;8(2):94–9.CrossRefPubMedGoogle Scholar
  9. 9.
    Centre for Reviews and Dissemination. Undertaking systematic reviews of research on effectiveness: CRD’s guidance for carrying out or commissioning reviews. 3rd ed. York: University of York; 2009.Google Scholar
  10. 10.
    Hughes M, McNeish D, Newman T, Roberts H, Sachdev D. What works? Making connections: linking research and practice. A review by Barnardo’s Research and Development Team. Ilford: Barnardo’s; 2000.Google Scholar
  11. 11.
    Thompson MA, Mugavero MJ, Amico KR, Cargill VA, Chang LW, Gross R, et al. Guidelines for improving entry into and retention in care and antiretroviral adherence for persons with HIV: evidence-based recommendations from an International Association of Physicians in AIDS Care panel. Ann Intern Med. 2012;156(11):817–33, W-284, W-5, W-6, W-7, W-8, W-9, W-90, W-91, W-92, W-93, W-94.Google Scholar
  12. 12.
    Statutory Authority: Public Health Law. Sect. §2786 and Article 21.Google Scholar
  13. 13.
    Statutory Authority: Public Health Law. Sect. §§69–1.2.Google Scholar
  14. 14.
    Part 63 HIV/AIDS Testing, Reporting and Confidentiality of HIV-Related Information [updated January 2002]. http://www.health.ny.gov/nysdoh/rfa/hiv/full63.htm Accessed 10 April 2013.
  15. 15.
    New York City Department of Health and Mental Hygiene. HIV Surveillance Annual Report, 2013; 2013.Google Scholar
  16. 16.
    New York State Department of Health. HIV/AIDS Surveillance Annual Report, 2013. 2013.Google Scholar
  17. 17.
    Hu YW, Kinsler JJ, Sheng Z, Kang T, Bingham T, Frye DM. Using laboratory surveillance data to estimate engagement in care among persons living with HIV in Los Angeles County, 2009. AIDS Patient Care STDS. 2012;26(8):471–8.CrossRefPubMedGoogle Scholar
  18. 18.
    Torian LV, Wiewel EW. Continuity of HIV-related medical care, New York City, 2005-2009: do patients who initiate care stay in care? AIDS Patient Care STDS. 2011;25(2):79–88.CrossRefPubMedGoogle Scholar
  19. 19.
    United Hospital Fund. The Fund at 125 2017https://www.uhfnyc.org/publications/880587. Accessed 28 Feb 2017.
  20. 20.
    New York City Department of Health and Mental Hygiene. United Hospital Fund Neighborhoods and NYC ZIP Code Areas 2017. https://www1.nyc.gov/assets/doh/downloads/pdf/survey/uhf_map_100604.pdf. Accessed 28 Feb 2017.
  21. 21.
    New York State Department of Health. ZIP Code Definitions of New York City Neighborhoods 2017. https://www.health.ny.gov/statistics/cancer/registry/appendix/neighborhoods.htm. Accessed 28 Feb 2017.
  22. 22.
    Taylor EF, Machta RM, Meyers DS, Genevro J, Peikes DN. Enhancing the primary care team to provide redesigned care: the roles of practice facilitators and care managers. Ann Fam Med. 2013;11(1):80–3.CrossRefPubMedPubMedCentralGoogle Scholar
  23. 23.
    New York State Department of Health. The HIV Quality of Care Program: Clinical Guidelines Program in the JHU School of Medicine, Division of Infectious Diseases, on behalf of the NYSDOH AIDS Institute; 2017 [cited 2017 11/05/2017]. https://www.hivguidelines.org/quality-of-care/about-the-program/quality-improvement. Accessed 11 May 2017.
  24. 24.
    New York State Department of Health. AIDS Institute (AI) Advisory Bodies: New York State Department of Health; 2016 [cited 2016 11/06/2016]. http://www.health.ny.gov/diseases/aids/general/about/advisory_bodies.htm Accessed 11 June 2016.
  25. 25.
    AIDS Institute NYSDoH. NYLinks [cited 2016. Available from: http://www.newyorklinks.org/measures-and-data. Accessed 28 Sept 2016.
  26. 26.
    New State Department of Health, AIDS Institute. NYLinks Regional Data Set for Upper Manhattan 2015. http://www.newyorklinks.org/measures-and-data. Accessed Sept.
  27. 27.
    New State Department of Health, AIDS Institute. Rochester NYLinks Evaluation Dissemination Slide Set. August 2015. http://www.newyorklinks.org/files/new-york-linkls-evaluation-dissemination-rochester-slide-set. Accessed Sept.
  28. 28.
    New State Department of Health, AIDS Institute. Buffalo NYLinks Evaluation Dissemination Slide Set. August 2015. http://www.newyorklinks.org/files/new-york-links-evaluation-dissemination-buffalo-slide-set. Accessed Sept.
  29. 29.
    Monroe County Department of Health. Email Communication. In: Magnani N, editor. 2015.Google Scholar
  30. 30.
    City University of New York, Institute for Implementation Science in Population Health. Ending the Epidemic Dashboard; 2017. http://etedashboardny.org Accessed 28 Feb 2017.
  31. 31.
    Heaton J, Day J, Britten N. Collaborative research and the co-production of knowledge for practice: an illustrative case study. Implement Sci. 2016;11:20.CrossRefPubMedPubMedCentralGoogle Scholar
  32. 32.
    Ratwani RM, Fong A. ‘Connecting the dots’: leveraging visual analytics to make sense of patient safety event reports. J Am Med Inform Assoc. 2015;22(2):312–7.PubMedGoogle Scholar
  33. 33.
    Althoff KN, Rebeiro PF, Hanna DB, Padgett D, Horberg MA, Grinsztejn B, et al. A picture is worth a thousand words: maps of HIV indicators to inform research, programs, and policy from NA-ACCORD and CCASAnet clinical cohorts. J Int AIDS Soc. 2016;19(1):20707.CrossRefPubMedPubMedCentralGoogle Scholar
  34. 34.
    Centers for Disease Control and Prevention. 2016 Sexually transmitted diseases surveillance: the state of STDs—infographic; 2017. https://www.cdc.gov/std/stats16/infographic.htm. Accessed 28 Sept 2017.
  35. 35.
    Centers for Disease Control and Prevention. 2016 Sexually transmitted diseases surveillance: customizable infographic with instructions; 2017. https://www.cdc.gov/std/stats16/infographic.htm. Accessed 28 Sept 2017.
  36. 36.
    Kadom N, Nagy P. Data drives quality improvement. J Am Coll Radiol. 2015;12(12 Pt A):1296–7.CrossRefPubMedGoogle Scholar

Copyright information

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

Authors and Affiliations

  • Carol-Ann Swain
    • 1
    • 4
  • 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

Personalised recommendations