REACH: Research Empowerment for Adult Congenital Hearts

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DESCRIPTION (provided by applicant): Objectives: To create the IT, data-sharing, education, and oversight tools necessary for a patient-driven, national adult congenital heart disease research network. Aims: (1) To demonstrate the feasibility of a patient-centered research model for patients with congenital heart disease by building regional structure and process to foster individual participation by patients with the ability to initiate and sustain the process and collecting assessments of patient needs and concerns at the national level; (2) To employ electronic health record technology to create a national infrastructure for multicenter research in congenital heart disease through establishing a uniform electronic health record specifically designed for practitioners in ACHD. Then through the electronic health data, deidentified clinical data will be provided to the patient community for research purposes; and (3) To empower bidirectional communication of research needs and outcomes between adult congenital heart patients and investigators by providing patient-driven hypothesis proposals for research studies and circulating research results through patient-mechanisms rather than providers. Background: Patients born with congenital heart disease, the most common birth defect, have benefited from monumental advances in treatment over the past 5 decades. Their survival has created an emerging population of adults with congenital defects, and spurred the formation of a new sub-specialty in cardiology, Adult Congenital Heart Disease (ACHD). With the emergence of this population, there is growing recognition that the patients continue to have cardiovascular problems as adults. It is increasingly clear that prior surgery in childhood does not equal a "cure." Arrhythmias, sudden death, complications during pregnancy, valve dysfunction, need for further surgery, heart failure, and heart transplantation are all common outcomes, sometimes not recognized in a timely manner. As this patient community ages its way forward through its uncharted natural history, it is finding an alarming lack of organized resources to assess, study, and treat its needs. In parallel, the providers who focus on this patient group recognize huge gaps in evidence-based practice, and no infrastructure for building needed studies. This grant seeks funding to address both the patient and provider needs, and solidify their mutual efforts to meet the same goals of treatment excellence in the ACHD field. Methods: Implementation of CONGENERATE will be implemented at 5 pilot locations, each of which offer unique challenges to implementation. Full integration with one widely-used institutional electronic medical records system (i.e., EPIC) will be attempted at 1 initial and 2 subsequent sites. A national REACH resource center will be established which will provide "toolkits" to eventually assist a wide variety of ACHD programs in implementing CONGENERATE, and assist in making CONGENERATE available as a free download to all interested ACHD programs. Strategies for patient engagement will include (1) adapting CONGENERATE for usage as a portable electronic health record, by creating a web-based portal to allow upload of password- protected CONGENERATE-generated EHRs, (2) convening multiple forums for bidirectional communication between patients and researchers, and (3) creating community infrastructure for education, engagement, and oversight. PUBLIC HEALTH RELEVANCE: The REACH project seeks to create the information technology, data-sharing, education, and oversight tools necessary for a patient-driven, national adult congenital heart disease research network. It will employ electronic health record technology to provide deidentified clinical data to adult CHD practitioners, researchers and the patient community for long-term outcome research purposes while creating pathways for patient- involvement.