Venous Access: National Guideline and Registry Development (VANGUARD): Advancing Patient-Centered Venous Access Care Through the Development of a National Coordinated Registry Network

There are over 8 million central venous access devices inserted each year, many in patients with chronic conditions who rely on central access for life-preserving therapies. Central venous access device-related complications can be life-threatening and add tens of billions of dollars to health care...

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Bibliographic Details
Published in:	Journal of medical Internet research Vol. 25; no. 4; p. e43658
Main Authors:	Iorga, Andrea, Velezis, Marti J, Marinac-Dabic, Danica, Lario, Robert F, Huff, Stanley M, Gore, Beth, Mermel, Leonard A, Bailey, L Charles, Skapik, Julia, Willis, Debi, Lee, Robert E, Hurst, Frank P, Gressler, Laura E, Reed, Terrie L, Towbin, Richard, Baskin, Kevin M
Format:	Journal Article
Language:	English
Published:	Canada Journal of Medical Internet Research 24-11-2023 Gunther Eysenbach MD MPH, Associate Professor JMIR Publications
Subjects:	Access Analysis Catheters Chronic illnesses Clinical outcomes Communication Computerized medical records Critical care Critical events Disease control Disease prevention Electronic records Emergency medical care Epidemiology Evidence-based medicine Extraction Fines & penalties Gastroenterology Harmonization Health Care Costs Health care expenditures Health information Health records Healthy food Humans Infectious diseases Information sharing Information systems Information technology Infrastructure Life threatening Medicaid Medical equipment Medical records Medical supplies Medical technology Medicare Medicine Mortality Nursing Nutrition Oncology Parenteral nutrition Partnerships Patient-Centered Care Patients Pediatrics Penalties Physiological apparatus Public health Public private partnerships Public-private sector cooperation Registries Society Stakeholders Surveillance systems Terminology Viewpoint United States > US patient-reported outcomes registry CLABSI catheter development life-threatening central venous access devices therapy reliable clinical system patient medical device CRBSI policy
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Summary:	There are over 8 million central venous access devices inserted each year, many in patients with chronic conditions who rely on central access for life-preserving therapies. Central venous access device-related complications can be life-threatening and add tens of billions of dollars to health care costs, while their incidence is most likely grossly mis- or underreported by medical institutions. In this communication, we review the challenges that impair retention, exchange, and analysis of data necessary for a meaningful understanding of critical events and outcomes in this clinical domain. The difficulty is not only with data extraction and harmonization from electronic health records, national surveillance systems, or other health information repositories where data might be stored. The problem is that reliable and appropriate data are not recorded, or falsely recorded, at least in part because policy, payment, penalties, proprietary concerns, and workflow burdens discourage completeness and accuracy. We provide a roadmap for the development of health care information systems and infrastructure that address these challenges, framed within the context of research studies that build a framework of standardized terminology, decision support, data capture, and information exchange necessary for the task. This roadmap is embedded in a broader Coordinated Registry Network Learning Community, and facilitated by the Medical Device Epidemiology Network, a Public-Private Partnership sponsored by the US Food and Drug Administration, with the scope of advancing methods, national and international infrastructure, and partnerships needed for the evaluation of medical devices throughout their total life cycle.
Bibliography:	ObjectType-Article-2 SourceType-Scholarly Journals-1 ObjectType-Feature-3 content type line 23 ObjectType-Review-1
ISSN:	1438-8871 1439-4456 1438-8871
DOI:	10.2196/43658