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

Author:

Chowdhury Devyani1ORCID,Johnson Jonathan N.23,Baker‐Smith Carissa M.4,Jaquiss Robert D. B.5,Mahendran Arjun K.6ORCID,Curren Valerie7,Bhat Aarti8,Patel Angira910,Marshall Audrey C.11,Fuller Stephanie12,Marino Bradley S.910,Fink Christina M.13ORCID,Lopez Keila N.14ORCID,Frank Lowell H.7,Ather Mishaal1,Torentinos Natalie15,Kranz Olivia15,Thorne Vivian16,Davies Ryan R.5,Berger Stuart910,Snyder Christopher17,Saidi Arwa6,Shaffer Kenneth18

Affiliation:

1. Cardiology Care for Children Lancaster PA

2. Division of Pediatric Cardiology Mayo Clinic Rochester MN

3. Division of Cardiovascular Diseases Mayo Clinic Rochester MN

4. Sidney Kimmel Medical College of Thomas Jefferson UniversityNemours'/Alfred I duPont Hospital for Children Cardiac Center Wilmington DE

5. Department of Cardiothoracic Surgery and Pediatrics Children's Hospital and University of Texas, Southwestern Medical Center Dallas TX

6. Department of Pediatrics University of Florida‐Congenital Heart Center Gainesville FL

7. Division of Cardiology Children's National Hospital Washington DC

8. Seattle Children's Hospital and University of Washington Seattle WA

9. Division of Cardiology Ann & Robert H. Lurie Children's Hospital of Chicago Chicago IL

10. Department of Pediatrics Northwestern University Feinberg School of Medicine Chicago IL

11. Cardiac Diagnostic and Interventional Unit The Hospital for Sick Children Toronto Ontario Canada

12. Division of Cardiothoracic Surgery Children's Hospital of Philadelphia Philadelphia PA

13. Department of Pediatric Cardiology Cleveland Clinic Cleveland OH

14. Lillie Frank Abercrombie Section of Cardiology Department of Pediatrics Texas Children's HospitalBaylor College of Medicine Houston TX

15. American College of Cardiology Washington DC

16. American Academy of Pediatrics Itasca IL

17. Division of Pediatric Cardiology The Congenital Heart Collaborative University Hospital Rainbow Babies and Children's Hospital Cleveland OH

18. Texas Center for Pediatric and Congenital Heart Disease University of Texas Dell Medical School/Dell Children's Medical Center Austin TX

Abstract

Abstract 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.

Publisher

Ovid Technologies (Wolters Kluwer Health)

Subject

Cardiology and Cardiovascular Medicine

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