Health Care Policy and Congenital Heart Disease: 2020 Focus on Our 2030 Future

• Published in: Journal of the American Heart Association Vol. 10; no. 20; p. e020605
• Main Authors: Chowdhury, Devyani, Johnson, Jonathan N, Baker-Smith, Carissa M, Jaquiss, Robert D B, Mahendran, Arjun K, Curren, Valerie, Bhat, Aarti, Patel, Angira, Marshall, Audrey C, Fuller, Stephanie, Marino, Bradley S, Fink, Christina M, Lopez, Keila N, Frank, Lowell H, Ather, Mishaal, Torentinos, Natalie, Kranz, Olivia, Thorne, Vivian, Davies, Ryan R, Berger, Stuart, Snyder, Christopher, Saidi, Arwa, Shaffer, Kenneth
• Format: Journal Article
• Language: English
• Published: England John Wiley and Sons Inc 19.10.2021
• Subjects: Adult; Contemporary Review; Forecasting; Health Policy; Healthcare Disparities; Heart Defects, Congenital - diagnosis; Heart Defects, Congenital - epidemiology; Heart Defects, Congenital - therapy; Humans; Workforce; health care workforce; congenital heart disease; health care disparities; health care policy; value‐based health care; advocacy
• ISSN: 2047-9980; 2047-9980
• DOI: 10.1161/JAHA.120.020605

The congenital heart care community faces a myriad of public health issues that act as barriers toward optimum patient outcomes. In this article, we attempt to define advocacy and policy initiatives meant to spotlight and potentially address these challenges. Issues are organized into the following 3 key facets of our community: patient population, health care delivery, and workforce. We discuss the social determinants of health and health care disparities that affect patients in the community that require the attention of policy makers. Furthermore, we highlight the many needs of the growing adults with congenital heart disease and those with comorbidities, highlighting concerns regarding the inequities in access to cardiac care and the need for multidisciplinary care. We also recognize the problems of transparency in outcomes reporting and the promising application of telehealth. Finally, we highlight the training of providers, measures of productivity, diversity in the workforce, and the importance of patient-family centered organizations in advocating for patients. Although all of these issues remain relevant to many subspecialties in medicine, this article attempts to illustrate the unique needs of this population and highlight ways in which to work together to address important opportunities for change in the cardiac care community and beyond. This article provides a framework for policy and advocacy efforts for the next decade.