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.

Introduction

This paper presents and discusses the findings of a community/university collaborative research project to develop accessible and relevant health data maps for a sub-area of a major Canadian city. In a larger sense, the impetus for the project behind this paper came from two trends in community health research in Canada throughout the 1980s and 1990s: (1) the increasing involvement of community stakeholders in the joint design, conduct and dissemination of research concerning local health problems; and, (2) attempts to bridge narrow academic disciplinary perspectives by fostering truly transdisciplinary investigation (Rosenfield, 1992; Health Canada, 1997; World Health Organization, 1997). The project grew from this context, and was fostered by a deeply held conviction, shared by both the community and university partners participating in this project, that a better job of understanding and acting on the ‘upstream causes’ of ill health at the population level (McKinlay, 1979), could be done through partnering, and integrating the diverse perspectives and resources represented in the project. This type of community/university research collaboration represents an emerging research paradigm (Kuhn, 1970) which itself requires further investigation.

The overall 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. Under this broad goal, we had two specific objectives. The first was to develop and iteratively refine via active community/university collaboration a geographic information system (GIS) for ready access to routinely collected community health data, and to study logistical, conceptual and technical problems encountered during system development. Our second objective was to document and analyze issues that can emerge in the process of community/university research collaboration and to discuss their implications for other such research partnerships. The purpose of this paper is to present an overview of the findings from the project. These findings relate to the two objectives of the project, namely the empirical research outcomes related to the construction of the novel community health GIS, and the results of the qualitative examination of the collaboration between community and university partners in developing the system. More detailed analyses of each of the two components of this project are the subject of future papers.

Immediately following this introduction, we describe the evolution of the community/university collaboration underlying this project. Then, following a brief review of relevant literature, we present the methods used for collaborative system development and assessment of the collaborative process. In order to maintain continuity within each objective of the project, findings are presented and discussed together for system development, then for the collaborative process. Finally, we conclude by outlining the relevancy of our findings and making recommendations for future work.

Because events prior to the initiation of most collaborative community-based projects have the potential to shape the nature, and influence the success of what subsequently develops (Altman, 1995; Hodgson & Abbasi, 1995; Guldan, 1996), we start with a brief project history. This project represents a unique community/university partnership. The community partners in this project were all members of the Southeast Toronto (SETO) coalition; a coalition of health agencies, social services and residents of a discrete geographical area of the larger city of Toronto. SETO was formed in 1989 to strengthen agency collaboration and community involvement in identifying and responding to the health needs of residents. The university partners included academics from several Departments across four Faculties at the University of Toronto—Arts and Science (Geography and Planning), Architecture, Medicine (Public Health Sciences) and Social Work.

The downtown Toronto community served by SETO members has, by Canadian standards, a high prevalence of low income, unemployment, single parent families, teen births, and elevated mortality rates from a variety of causes. In addition, certain groups face barriers to accessing health care information and services, and to involvement in decision-making. SETO also has a long history of community mobilization. For example, Toronto's first legal clinic was established in the area, and many other services were established as a result of the residents’ commitment and ability to take action. Accessible community health information has been an interest of SETO since its inception. For example, one coalition partner, the Toronto Public Health Department, designed a series of neighborhood profiles for use by local agencies. SETO partners had also explored the use of maps for health assessment and service planning, and were interested in further investigating the potential of this method of representing health information.

From an academic perspective, this project arose out of a deliberate effort on the part of the University of Toronto to facilitate a collaborative applied research initiative, which was to focus on the basic determinants of urban health, employ interdisciplinary teams, and involve local community organizations as active partners. This three-year initiative began in 1994 and was led by a newly appointed ‘Provostial Advisor on Population Health.’ The first steps were a series of ad hoc meetings of academics interested in such research collaboration, together with members of SETO. The project that ultimately received funding was a direct outcome of these initial meetings.

In the years leading up to the funded project, SETO partners identified two issues of specific interest—respiratory health, and the need for accessible and relevant community health information. In 1995, a team of co-investigators including SETO members and researchers from the University of Toronto prepared and submitted to a national public sector funding agency an initial research proposal to collaboratively develop health data maps which would be accessible and useful to SETO members. This initial proposal was rejected and, in 1996, SETO and the University of Toronto Research Office provided the ‘health data mapping project’ team with ‘seed’ funding to conduct an exploratory investigation into the nature and extent of respiratory illness in this area of the city. The results of this preliminary investigation indicated that rates of hospital admissions for respiratory illness were greater than expected. While the limited information available did not allow for a thorough examination of the determinants and status of community respiratory health status, it did confirm that both respiratory health and access to a greater breadth and depth of health information were priorities for SETO members. At the same time as this exploratory study was being carried out, the project team continued to revise the more extensive research proposal, which was re-submitted in September 1996. This submission was successful and funding was received for a two-year project that began in September 1997.

Information and collaboration are both fundamental to community health. The importance of each is stressed by various perspectives on community health, including Health Promotion (World Health Organization (1986), World Health Organization (1988), World Health Organization (1997), 1988, 1997), Population Health (Evans, Barer, & Marmor, 1994; Frank, 1995), and Health for All (World Health Organization, 1998; Zoellner & Lessof, 1998). It has been suggested that information and information systems can facilitate examination of health determinants, monitoring of health outcomes, and empowerment of communities (Evans et al., 1994; Lorenzi, Riley, Blyth, Southon, & Dixon, 1997; Zoellner & Lessof, 1998). Similarly, a role has been identified for collaboration within and between academic, government and non-governmental organization sectors to further community health research and action (World Health Organization, 1997; Zoellner & Lessof, 1998). Despite an understanding of the importance of information and collaboration in community health, gaps exist in our knowledge, particularly in terms of practical issues associated with both health information (Berndt, Hevner, & Studnicki, 1998; Mettee, Martin, & Williams, 1998; Zoellner & Lessof, 1998) and research collaboration (Altman, 1995; Baum, Santich, Craig, & Murray, 1996; Guldan, 1996).

GIS are potentially powerful resources for community health for many reasons including their ability to integrate data from disparate sources, and their inherent mapping functions. A well-developed GIS has the potential to provide ready access to a wealth of health data, but design considerations for GIS in a community health context are largely unknown. Experience with applications of GIS to health issues has increased considerably over the last decade, but in vast majority of cases, GIS has been applied to time-limited etiological research as opposed to ongoing efforts in health planning, promotion and protection. GIS are now frequently used for health research in a variety of areas including communicable diseases (Becker, Glass, Brathwaite, & Zenilman, 1998), cardiovascular diseases (Scott, Temovsky, Lawrence, Gudaitis, & Lowell, 1998), alcohol (Midford et al., 1998) and drug use (Latkin, Glass, & Duncan, 1998), animal disease control (McGinn, Cowen, & Wray, 1996), and chronic respiratory diseases (Hales, Lewis, Slater, Crane, & Pearce, 1998). Recent reviews of the use of GIS for research in epidemiology (Anonymous, 1996; Clarke, McLafferty, & Tempalski, 1996), tropical diseases (Openshaw, 1996) and environmental health (Dunn & Kingham, 1996; Vine, Degnan, & Hanchette, 1997) reveal an evolving understanding of the benefits and drawbacks of applying a GIS to etiological health research. There is also a growing trend towards using GIS for disease surveillance (Devasundaram, Rohn, Dwyer, & Israel, 1998) and health services research (Bullen, Moon, & Jones, 1996; Scott et al., 1998).

These examples describe a range of GIS applications in a health context, but they all apply a GIS to a single research or surveillance issue over a limited period. The relatively infrequent use of GIS to facilitate ongoing community health planning and promotion may be due to the problems encountered in identifying, acquiring and integrating a wide range of georeferenced data relevant to community health (Twigg, 1990; Marrett, Theis, Baker, & Whittick, 1998). However, if these difficulties can be overcome, experience suggests that GIS (van Oers, 1993) and information systems in general (Roos, 1995; Roos et al., 1999), can make use of existing data sources to support decision-making and problem solving in community health planning, service delivery, and health promotion. Given the limited experience in developing systems for ongoing community health use, it is important to identify the logistical, conceptual and technical issues encountered in system development in this context.

While there is a considerable body of literature describing community/university research partnerships, and/or the outcomes of these research collaborations, relatively little research has examined the actual process of collaborative research. The few studies that do exist have noted that as organizations and individuals are brought together to form research partnerships, differences in their organizational/institutional cultures become apparent. These differences relate to issues of power, expertise, and control and are exacerbated by communication problems and discrepancies in resources (Bickel & Hattrup, 1991; Peterson, 1993; Gilling, 1994; Somekh, 1994; Barnsley, 1995; Cottrell, Lord, Martin, & Prentice, 1996; Gondolf, Yllo, & Campbell, 1997; Rovegno & Bandhauer, 1998). Some studies have also identified that different bases of knowledge, ways of behaving, thinking, acting, and talking all contribute to difficulties in communication. Differing views about the nature and purpose of the research, methods for studying a particular issue and the use—including the political use—of the research findings tended to further complicate the collaboration (Bogo et al., 1992; Nyden & Wiewel, 1992; Peterson, 1993; Boutilier & Mason, 1994; Gilling, 1994; Cottrell et al., 1996; Gondolf et al., 1997).

Time, in terms of both the time required to carry out the research and the different time orientations of partner organizations, tends to complicate collaborative research efforts (Bickel & Hattrup, 1991; Nyden & Wiewel, 1992; Galinsky, Turnbull, Meglin, & Wilner, 1993; McFarland, DiBlasio, & Belcher, 1993; Boutilier & Mason, 1994; Gilling, 1994; Bevilacqua, Morris, & Pumariega, 1996; Corse, Hirschinger, & Caldwell, 1996; Lundy, Rippey-Massat, Smith, & Bhasin, 1996; McWilliam, Desai, & Greig, 1997; Rovegno & Bandhauer, 1998). In addition, it has been recognized that an intensive time commitment is required to develop mutual understanding and effective working relationships (Bevilacqua et al., 1996). It has also been reported that the necessary slower pace of the collaborative research may result in feelings of dissatisfaction on the part of some researchers (McWilliam et al., 1997).

Several studies have reported that each of the partners involved in collaborative research perceive particular risks and threats in entering into participatory research partnerships. Community partners tend to see potential conflicts between service provision and research demands (Stiffman, Feldman, Evans, & Orme, 1984; Corse et al., 1996; Lundy et al., 1996; Gondolf et al., 1997), while university partners tend to see the collaboration as posing threats to research rigor, control over the research process (Stiffman et al., 1984; Galinsky et al., 1993; Lundy et al., 1996) and constraints on publication opportunities.

In summary, while the existing literature provides broad descriptions of issues in collaborative research, there has been, to date, no rich, detailed study of the process of collaboration between the partners as they work together on a joint research project. The project discussed here sought, in part, to address this gap in the research on collaborative research.