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

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.

Participatory Surveillance Based on Crowdsourcing During the Rio 2016 Olympic Games Using the Guardians of Health Platform: Descriptive Study

“…The use of mobile devices to improve the data collection, processing, and analysis processes for epidemiology and surveillance has contributed to great advances in public health in the aspects of innovation and digital transformation in this area [9][10][11][12][13][14][15]. With the evolution and ubiquity of mobile devices and their operating systems, in addition to increasing digital inclusion and internet connectivity, research and collaborative strategies have been adopted to improve the quality of information generated in health, especially in the understanding of epidemiological patterns [16][17][18]. Strategies for monitoring respiratory, diarrheal, and rash syndromes due to arboviruses are examples of how to drive digital disease detection platforms to address the production of strategic information for health surveillance based on crowdsourcing in the American, European, African, and Asian continents; some platforms include Flu Near You, Influenza.Net, AfyaData, Vigilant-e, Saúde na Copa, and Guardians of Health [4,[19][20][21][22][23][24][25][26][27][28][29].…”

Special Projects of National Significance Systems Linkages Initiative (2011 to 2016): Improving Access to Care for Hard-to-Reach Populations Living with HIV

“…Hague et al [16] present an application of a data-to-care approach implemented by the Massachusetts Department of Public Health involving the generation of an out-of-care list of patients lacking a laboratory test result for at least a 6 month period. Swain et al [17] describe their process in the production of data packages that integrate surveillance and treatment data. The data packages were customized for regional use by twelve health care organizations engaged in the NYLinks initiative.…”