Document 1960
 DOCN  M94A1960
 TI    An effective system for tracking challenging populations in community
       based HIV research.
 DT    9412
 AU    Fuentes L; el-Sadr W; Capps L; Harlem Hospital Center, New York, NY
       10037.
 SO    Int Conf AIDS. 1994 Aug 7-12;10(1):412 (abstract no. PD0256). Unique
       Identifier : AIDSLINE ICA10/94370615
 AB    OBJECTIVES: To describe the various components and analyze the outcomes
       of a system developed to collect follow-up data on minority patients
       participating in studies conducted in New York City by the Harlem AIDS
       Treatment Group. METHODS: A plan for tracking patients was developed by
       project staff, clinicians, an advisory committee and people living with
       HIV. The plan included the collection of locator information, building a
       strong bond between patient and provider, provision of incentives,
       anticipating missed visits, a contact strategy, networking with city and
       local resources, and the use of staff that is representative of the
       community being served. RESULTS: The lost to follow-up rate among 362
       patients participating in an Observational Data Base Study decreased
       from over 70% to 24%. Ongoing efforts continue to improve the collection
       of data. CONCLUSIONS: The methods employed have facilitated the
       collection of important HIV data and helped to fortify the bond between
       patient and provider, a bond which is essential for providing high
       quality patient care and collecting data in community based research.
       Challenging populations, minorities and women from lower economic
       groups, can effectively participate in HIV longitudinal studies.
       However, specific measures are needed to eliminate or reduce barriers,
       including patient incentives, the use of personnel representative of the
       community, and the promotion of strong patient-provider bond.
       Appropriate resources are needed to conduct such an approach.
 DE    Continuity of Patient Care/*ORGANIZATION & ADMIN  Female  Follow-Up
       Studies  Human  HIV Infections/*THERAPY  Longitudinal Studies  Male
       Minority Groups  New York City  Treatment Refusal  Women  MEETING
       ABSTRACT

       SOURCE: National Library of Medicine.  NOTICE: This material may be
       protected by Copyright Law (Title 17, U.S.Code).