Lessons Learned in the Development of a Clinical Information System in an Urban Underserved Community Health Clinic: A Community Partnered Participatory Research (CPPR) Approach

IntroductionUrban underserved communities manifest the highest burden of chronic diseases and the most challenged health care infrastructure in the United States. Improving the management and treatment of chronic diseases is an ongoing challenge for community clinics that provide care for underinsured/uninsured minority populations (1). Several strategies for improving the overall quality of care, efficiency and improving outcomes in general and especially for primary care settings in these communities have been proposed, including the recently popular chronic care model approach (2,3). This approach emphasizes health information technology (HIT) development and utilization as a core strategy for improving coordinated and decision supported care. Such HIT systems incorporate core functions that support; health information and data collection, results management, decision support, electronic communication and connectivity, patient support, administrative processes, and reporting and population based health management (4).Diabetes Registries are a form of basic HIT systems of particular utility in resource poor settings and are the most widely used HIT in community health care settings (5,6). Chronic diseases, such as diabetes are better managed through the use of registries - electronic depositories of key clinical data on diabetic patients used to target and track high-risk patients, send reminders to patients, and provide physicians with guideline concordant care alerts and reminders - with the potential to lead to significant improvements in clinical outcomes (7). While HIT systems, such as disease registries, have the potential to improve medical care dramatically, particularly in public non-specialty primary care settings, the adoption and implementation of HIT systems in general have had less than expected success (8-11).Community health centers, the principal providers of primary care services within the urban health care safety net system, face multiple challenges in the development and implementation of HIT. Multi-factorial influences including but not limited to (a) resource availability, (b) organizational disposition and capacity for HIT adoption and implementation, (c) HIT systems design and adaptability (d) provider and staff perceptions of utility and (e) unintended consequences of HIT implementation all contribute to the slow rate of deployment of these systems in these settings where they are most needed (12-14). While community clinics have been identified as prime targets for the adoption of HIT innovations such as disease registries, little is known about the utilization of HIT and specifically disease registries in such settings (12,15). A recent first of its kind comprehensive survey of HIT use among California Community Clinics suggests that while 96% of the clinics have diabetes registries in place, only 31% report that all providers use the registries (6). The discrepancy between the pervasive presence and low utilization of diabetes registries in such settings suggests that significant barriers to adoption may exist.Among several barriers to HIT access and use for underserved populations are the following: a) lack of representation of stakeholders in the determination of community needs; b) HIT applications not targeted to the particular needs of such communities and consequently not appreciated by community members; c) lack of trust by community members of HIT applications and their utility; and d) HIT developers' lack of understanding of the needs and cultures of target communities (15). Several strategies have been identified to address these barriers including policy, funding, research and education. One of the key recommendations highlighted the importance of using "... participatory action research frameworks, taking special care to involve all stakeholders in the development, conduct and leveraging of all results of research" (15).Community Partnered Participatory Research (CPPR) offers a research approach, which addresses the barriers identified to HIT use in underserved communities. …