The Community Health Advisory & Information Network (CHAIN) is an ongoing prospective cohort study of representative samples of persons living with HIV in New York City (NYC) and the Tri-County region of Westchester, Rockland and Putnam Counties. As part of the evaluation activities supporting local Ryan White Part A services planning and quality improvement, the mission of CHAIN is to supply systematic data from the perspective of persons living with HIV about their needs for health and human services, their encounters with the full continuum of HIV services, and their physical, mental and social well-being.
CHAIN is community engaged research with multiple stakeholders. The research is conducted by the Mailman School of Public Health at Columbia University in collaboration with the Human Services Planning Council of New York (HIV Planning Council), the NYC Department of Health and Mental Hygiene (DOHMH) and the New York State Department of Health. A Technical Review Team (TRT), with representation from each of the collaborating institutions, oversees the work of CHAIN. With input from the Planning Council and its committees, the TRT selects topics for investigation, provides feedback on study plans and reviews reports for dissemination.
CHAIN collects data through in-person interviews that are designed to capture the diverse views and experiences of people with HIV. They are conducted by trained community interviewers, who are matched to respondents as much as possible with respect to gender and race/ethnicity. Interviews are conducted in Spanish or other languages as may be needed. Major interview topics include: (1) quality of life with respect to health, physical, psychological and social well-being, (2) need for health and social services, (3) health and social services access, utilization and satisfaction; (4) socio-demographic characteristics; (5) housing and other aspects of living situation; (6) sex and drug use behaviors; and (7) informal caregiving from friends, family and volunteers. A number of topics have been added or updated over the years, including revisions to account for advances in antiretroviral therapies, evolving models of care coordination, and internet and social media use.
CHAIN has engaged three separate cohorts of NYC residents with HIV since its inception in 1994. The first NYC cohort (n=968) was recruited during 1994-95. It remained active completing follow-up interviews through 2001. The second NYC cohort was recruited during 2002-03 (n=1,012) with a subset continuing to the present. Recruitment of a third NYC cohort limited to PWH under age 40 years started in 2015 and will be supplemented by additional recruitment in 2023 (target n=600). For all cohorts, a two-stage probability sampling method was followed to ensure that participants would be representative of adults (age 18+ years) aware of their HIV diagnosis. For the first stage, a large number of medical care and social service agencies with HIV caseloads of 20 or more were randomly selected from across all five boroughs, and invited to participate as recruitment sites. HIV-positive clients were then recruited with the assistance of agency staff, either through random selection from client rosters, or through an onsite, sequential enrollment procedure.
CHAIN was extended to the Tri-County region in 2001. A methodology similar to that for the NYC cohorts was used to recruit a Tri-County CHAIN cohort (n=482) that was active through 2007. Starting in 2008, a repeated cross-sectional design was instituted, in which Tri-County study participants are recruited and interviewed over two-year cycles. In this repeated cross- sectional approach, 100 to 150 HIV-positive Tri-County residents are interviewed each year.
Sample attrition has remained at low levels. Among CHAIN participants not known to be deceased or living outside NYC survey completion rates have remained in excess of 80% for all rounds of interviews, except for interruption of in-person interviews during the COVID-19 pandemic restrictions. To date, more than 15,000 interviews have been completed with approximately 4,000 individuals with HIV.
The CHAIN project has been supported under grants to the NYC DOHMH from the Ryan White HIV Treatment Extension (formerly CARE) Act. In addition to work on behalf of the HIV Planning Council and local health departments, the CHAIN team has conducted special studies funded by the Ryan White SPNS program of the Health Resources and Services Administration (HRSA) HIV/AIDS Bureau, the Centers for Disease Control and Prevention, the MAC AIDS Foundation, and most recently the New York State Department of Health AIDS Institute.
The CHAIN team disseminates findings through written reports and presentations that respond to the questions, interests, and priorities of the HIV Planning Council, its committees, and the TRT. CHAIN reports range from documents of 30 or more pages that summarize results of complex statistical analyses to brief reports under 10 pages that address a narrowly defined policy or program question. Since 1994, over 200 reports have been written examining a range of topics, with continuing attention to unmet health and social service needs, trends in service utilization, and various health and psychosocial outcomes.
Below is a complete list of CHAIN reports that are freely available for downloading. Senior CHAIN investigators are available for presentations to interested professional and community groups. For more information about the Mailman School of Public Health at Columbia University, click here.