Making health data maps: a case study of a community/university research collaboration

Abstract

This paper presents the main findings from a collaborative community/university research project in Canada. The goal of the project was to improve access to community health information, and in so doing, enhance our knowledge of the development of community health information resources and community/university collaboration. The project built on a rich history of community/university collaboration in Southeast Toronto (SETO), and employed an interdisciplinary applied research and action design. Specific project objectives were to: (1) develop via active community/university collaboration a geographic information system (GIS) for ready access to routinely collected health data, and to study logistical, conceptual and technical problems encountered during system development; and (2) to document and analyze issues that can emerge in the process of community/university research collaboration. System development involved iteration through community user assessment of need, development or refinement of the GIS, and assessment of the GIS by community users. Collaborative process assessment entailed analysis of archival material, interviews with investigators and participant observation. Over the course of the project, a system was successfully developed, and favorably assessed by users. System development problems fell into four main areas: maintaining user involvement in system development, understanding and integrating data, bringing disparate data sources together, and making use of assembled data. Major themes emerging from the community/university collaborative research process included separate community and university cultures, time as an important issue for all involved, and the impact of uncertainty and ambiguity on the collaborative process