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Community Engagement and Research (CER) Overview: Crossing the Quality Chasm, an Institute of Medicine report, called for a major campaign dedicated to discovering effective methods for improving health and reducing health disparities at the national, regional, state, and local levels of society. This call to action resonates in the Delaware Valley, as the region confronts the challenge of mitigating the human impact and related costs associated with relatively high levels of obesity, diabetes, infant mortality and HIV, as well as cardiovascular and cancer deaths. There is a growing recognition that the successful translation of "evidence-based" interventions into clinical practice in community settings is an integral part of a successful comprehensive strategy for improving population health and reducing health disparities. Historically, academic medical centers, healthcare institutions, and communities that now comprise the Delaware Valley Institute for Clinical and Translational Science (DVICTS) have not focused their energies and resources in a concerted manner to support clinical and translational research that can help to maximize the quality of healthcare provided and reduce health disparities in the region. In forming DVICTS, the 4 partner institutions have dedicated themselves to developing new collaborative structures and initiatives that will catalyze the process of improving population health outcomes in the Delaware Valley. An important aspect of that effort will be directed by the Delaware Valley Resource for Community Engagement and Research (DVR-CER). The State of Delaware will be the initial platform for DVR-CER operations, with expansion to southeastern Pennsylvania and beyond, envisioned as DVICTS matures. Delaware provides an important opportunity to initiate in terms of race and ethnicity and in population distribution in urban, suburban, and rural settings. The 4 DVICTS partner institutions all come to DVICTS as practitioners of community engagement, each with a history of involvement with regional, community-dwelling populations through educational and community outreach activities. DVICTS members also connect to other key partners, including healthcare provider groups, community agencies, consortia, coalitions, and the public health community. Each institution includes recognized clinical leaders, as well as established investigators involved in community-based research. These relationships will provide DVR-CER with access to populations as well as provider communities needed for a bi-directional approach to translational research. DVICTS institutions also currently work with the Delaware Division of Public Health and many community groups to address important public health issues. The majority of Delawareans receive healthcare services through primary care practices. Unlike most of the nation, however, primary care practices (PCPs) in Delaware, along with their patient populations, are linked to a statewide electronic health information network known as the Delaware Health Information Network (DHIN). We believe that the DHIN is the only fully functional, statewide regional health information organization (RHIO) in the nation. Electronic linkage between healthcare providers and patients in Delaware extends to children and adolescents as well, via a nationally acclaimed electronic medical records network operated through the Nemours/Alfred I. duPont Hospital for Children (Nemours/AIDHC) healthcare system. Christiana Care Health System (CCHS) and Nemours/AIDHC, 2 of the 4 DVICTS partner institutions, are the major health-care delivery systems in Delaware. As a result, the DVICTS partnership is poised to conduct practice-based research and to influence standards for healthcare for diverse patient populations. Our formal connection with the Delaware state health department not only affords access to DHIN, but also provides DVICTS researchers with tools that can be used to facilitate community-oriented needs assessment, identify important research opportunities, and disseminate information about evidence-based interventions. DVICTS will also be able to incorporate statewide health monitoring systems in the process of evaluating project outcomes on a large scale. Over the past decade, DVICTS institutions have collaborated with community organizations in Delaware and parts of southeastern Pennsylvania on a range of health education programming and community research projects. Through these efforts, DVICTS institutions have gained substantial experience in organizing community health education programs with diverse populations. However, with some notable exceptions, most projects have been institution-centric and have been focused on providing outreach education. Limited attention has been directed towards engaging the community in clinical and translational research. To change this state of affairs, DVICTS has charged DVR-CER with the mission of achieving the following objectives:
Going forward, DVR-CER will use a community-based participatory research (CBPR)-based approach to identify and prioritize health-related problems, involve community partners and T3 researchers in designing and implementing relevant initiatives, and in evaluating outcomes. We will seek to overcome traditional barriers to community engagement in research by involving community participants in each step of the research process. DVR-CER will build T3 research capacity by engaging community partner organizations in the process of educating community and academic researchers who are new to translational research. This effort will include identifying community-based collaborative opportunities, supporting community partner organization participation in T3 research through the provision of training and other resources, and guiding new T3 investigators through the process of developing effective collaborations with community partners. Additionally, DVR-CER will offer grant support for developing innovative translational projects. Finally, DVR-CER will create a forum for planning and promoting the dissemination of research findings for use in community settings. Innovation. DVR-CER will use the CBPR-based "collaborative model" to guide our approach to engaging the community in clinical and translational research. This framework conceives of community engagement as a coordinated process that involves outreach education to community partners, primary care practices, and populations; the identification of collaborative partnership opportunities and provision of support for innovative research project development, implementation, and evaluation; and the systematic dissemination of research findings to the community. In accordance with the collaborative model, DVR-CER will introduce several important innovations designed to foster community engagement in clinical and translational research. We will establish a new inter-organizational structure to manage the process of community engagement in research. The basic structure will include a coordinating office (CO), a steering committee, and a community advisory committee. In addition, we will create a program office (PO) to manage 3 new programs: a Community Partnership Program, a Population Research Program, and a Dissemination Research Program. The coordinating office and the program office will work closely with three program subcommittees to guide implementation of these three new programs. Community representatives will be included on each committee and subcommittee. Thus, at all levels of DVR-CER, we will engage the community in shaping efforts in response to community needs. In the Community Partnership Program, we will deliver the Who is Missing Out? educational program at community sites. The Who is Missing Out? educational program is designed to inform community members about clinical and translational research, address factual and attitudinal issues related to translational research and clinical trials, provide accurate information in plain language, discuss the historical and contemporary experiences of community members with the healthcare system, elicit attitudes and beliefs related to research, and encourage individuals to make informed decisions about personal medical care and clinical research participation. As part of this process, Community Partnership Program staff will also assess community sites as potential research partners. A DVR-CER Population Research Program will work with identified community partners to determine the fit between community partner and translational research team interests and form new collaborative research teams. Program staff will provide support to community sites and translational research teams for project design, implementation, and evaluation. An innovative focus of the Population Research Program will be to initiate the process of linking primary care practices into a functional research network, utilizing the DVC-Biomedical Informatics federated research data warehouse, Clinical and a Translational Science Patient Registry data mart and Translational Research Automated Communication System, as well as the Research Electronic Data Capture (REDCap) and REDCap Survey applications. Ultimately, we aim to create a new practice-based research network (PBRN) that will serve to connect diverse community populations to an array of translational research opportunities. The Population Research Program will make a special effort to encourage new research studies that are aimed at identifying methods that can be used in healthcare settings to increase informed and shared health decision making about disease prevention activities, early detection, treatment, and survivorship. This effort is consistent with a recent call to action for primary care. DVR-CER will ensure a focus on dissemination research by taking the unique approach of creating the Dissemination Research Program (DRP) within the DVR-CER to encourage and support the development of pilot projects in dissemination research that capitalize on the statewide reach of informatics systems and public health. Particular attention will be focused on promoting the use of the a Research Eligibility and Interest Registry as a novel tool for disseminating information about and providing access to T3 research opportunities. In addition, the DRP will harness relationships with statewide consortia and the Delaware Division of Public Health to identify evidence-based guidelines and interventions that address key population health and healthcare needs. Dissemination to providers and community agencies will be a central goal for the program. Collaborative work with DVICTS investigators will generate novel approaches for dissemination and create the opportunity to study effectiveness of interventions in the real world across an entire state. Structure and Function. Achieving important community health outcomes requires a multi-dimensional approach to the challenges of informing the community about research; generating sustained involvement in research; preparing researchers to work effectively in community settings; supporting collaborative research initiatives; and disseminating research findings for use in the community. DVR-CER was formed to address these challenges. As indicated earlier, DVR-CER will include a Coordinating Office(CO), which will be headquartered at Thomas Jefferson University (TJU) and directed by Dr. R. E. Myers, PhD, professor and director, Division of Population Science, Department of Medical Oncology, TJU, who is also the leader the DVR-CER. The DVR-CER will also have a Program Office(PO) to be housed at the University of Delaware (UD) and driected by Dr. M. Peterson, EdD, professor and founding director, Health Promotion Program (UD), and Dr. D. Ehrenthal, MD, medical director of Women's Health Programs for the Department of Obstetrics and Gynecology and medical director of the Community Center of Excellence in Women's Health (CCHS), who are also co-leaders of DVR-CER. The new community advisory committee and steering committee will provide administrative guidance to DVR-CER. |