Operational and Ethical Considerations for a National Adult Congenital Heart Disease Database
As more adults survive with congenital heart disease, the need to better understand the long‐term complications, and comorbid disease will become increasingly important. Improved care and survival into the early and late adult years for all patients equitably requires accurate, timely, and comprehen...
| Main Authors: | , , , , , , , , , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
Wiley
2022-04-01
|
| Series: | Journal of the American Heart Association: Cardiovascular and Cerebrovascular Disease |
| Subjects: | |
| Online Access: | https://www.ahajournals.org/doi/10.1161/JAHA.121.022338 |
| _version_ | 1797849623252959232 |
|---|---|
| author | Elisa A. Bradley Abigail Khan Demetria M. McNeal Katia Bravo‐Jaimes Amber Khanna Stephen Cook Alexander R. Opotowsky Anitha John Marc Lee Sara Pasquali Curt J. Daniels Michael Pernick James N. Kirkpatrick Michelle Gurvitz |
| author_facet | Elisa A. Bradley Abigail Khan Demetria M. McNeal Katia Bravo‐Jaimes Amber Khanna Stephen Cook Alexander R. Opotowsky Anitha John Marc Lee Sara Pasquali Curt J. Daniels Michael Pernick James N. Kirkpatrick Michelle Gurvitz |
| author_sort | Elisa A. Bradley |
| collection | DOAJ |
| description | As more adults survive with congenital heart disease, the need to better understand the long‐term complications, and comorbid disease will become increasingly important. Improved care and survival into the early and late adult years for all patients equitably requires accurate, timely, and comprehensive data to support research and quality‐based initiatives. National data collection in adult congenital heart disease will require a sound foundation emphasizing core ethical principles that acknowledge patient and clinician perspectives and promote national collaboration. In this document we examine these foundational principles and offer suggestions for developing an ethically responsible and inclusive framework for national ACHD data collection. |
| first_indexed | 2024-04-09T18:47:04Z |
| format | Article |
| id | doaj.art-317bc40aeb604e988262f2d8f7032033 |
| institution | Directory Open Access Journal |
| issn | 2047-9980 |
| language | English |
| last_indexed | 2024-04-09T18:47:04Z |
| publishDate | 2022-04-01 |
| publisher | Wiley |
| record_format | Article |
| series | Journal of the American Heart Association: Cardiovascular and Cerebrovascular Disease |
| spelling | doaj.art-317bc40aeb604e988262f2d8f70320332023-04-10T11:57:34ZengWileyJournal of the American Heart Association: Cardiovascular and Cerebrovascular Disease2047-99802022-04-0111710.1161/JAHA.121.022338Operational and Ethical Considerations for a National Adult Congenital Heart Disease DatabaseElisa A. Bradley0Abigail Khan1Demetria M. McNeal2Katia Bravo‐Jaimes3Amber Khanna4Stephen Cook5Alexander R. Opotowsky6Anitha John7Marc Lee8Sara Pasquali9Curt J. Daniels10Michael Pernick11James N. Kirkpatrick12Michelle Gurvitz13The Ohio State University Wexner Medical CenterDorothy M. Davis Heart and Lung Research Institute Columbus OHAdult Congenital Heart ProgramKnight Cardiovascular InstituteOregon Health and Science University Portland ORDepartment of Medicine University of Colorado Anschutz Medical Campus Aurora CODivision of Cardiovascular Medicine University of California Los Angeles CADepartment of Medicine University of Colorado Anschutz Medical Campus Aurora COIndiana University Health and Riley Children's Hospital Indianapolis INDepartment of Pediatrics The Heart InstituteCincinnati Children's HospitalUniversity of Cincinnati College of Medicine Cincinnati OHDivision of Cardiology Children's National Health System Washington DCThe Heart Center, Nationwide Children's Hospital Columbus OHDepartment of Pediatric Cardiology University of Michigan and Mott Children's Hospital Ann Arbor MIDivision of Cardiovascular Medicine & Nationwide Children’s Hospital The Ohio State University Department of Internal Medicine Columbus OHBoard of Directors Member Adult Congenital Heart Association Media PAUniversity of Washington Heart Institute and Department of Bioethics and Humanities Seattle WADepartment of Cardiology Boston Children’s Hospital Boston MAAs more adults survive with congenital heart disease, the need to better understand the long‐term complications, and comorbid disease will become increasingly important. Improved care and survival into the early and late adult years for all patients equitably requires accurate, timely, and comprehensive data to support research and quality‐based initiatives. National data collection in adult congenital heart disease will require a sound foundation emphasizing core ethical principles that acknowledge patient and clinician perspectives and promote national collaboration. In this document we examine these foundational principles and offer suggestions for developing an ethically responsible and inclusive framework for national ACHD data collection.https://www.ahajournals.org/doi/10.1161/JAHA.121.022338ACHDBig Dataethicsquality |
| spellingShingle | Elisa A. Bradley Abigail Khan Demetria M. McNeal Katia Bravo‐Jaimes Amber Khanna Stephen Cook Alexander R. Opotowsky Anitha John Marc Lee Sara Pasquali Curt J. Daniels Michael Pernick James N. Kirkpatrick Michelle Gurvitz Operational and Ethical Considerations for a National Adult Congenital Heart Disease Database Journal of the American Heart Association: Cardiovascular and Cerebrovascular Disease ACHD Big Data ethics quality |
| title | Operational and Ethical Considerations for a National Adult Congenital Heart Disease Database |
| title_full | Operational and Ethical Considerations for a National Adult Congenital Heart Disease Database |
| title_fullStr | Operational and Ethical Considerations for a National Adult Congenital Heart Disease Database |
| title_full_unstemmed | Operational and Ethical Considerations for a National Adult Congenital Heart Disease Database |
| title_short | Operational and Ethical Considerations for a National Adult Congenital Heart Disease Database |
| title_sort | operational and ethical considerations for a national adult congenital heart disease database |
| topic | ACHD Big Data ethics quality |
| url | https://www.ahajournals.org/doi/10.1161/JAHA.121.022338 |
| work_keys_str_mv | AT elisaabradley operationalandethicalconsiderationsforanationaladultcongenitalheartdiseasedatabase AT abigailkhan operationalandethicalconsiderationsforanationaladultcongenitalheartdiseasedatabase AT demetriammcneal operationalandethicalconsiderationsforanationaladultcongenitalheartdiseasedatabase AT katiabravojaimes operationalandethicalconsiderationsforanationaladultcongenitalheartdiseasedatabase AT amberkhanna operationalandethicalconsiderationsforanationaladultcongenitalheartdiseasedatabase AT stephencook operationalandethicalconsiderationsforanationaladultcongenitalheartdiseasedatabase AT alexanderropotowsky operationalandethicalconsiderationsforanationaladultcongenitalheartdiseasedatabase AT anithajohn operationalandethicalconsiderationsforanationaladultcongenitalheartdiseasedatabase AT marclee operationalandethicalconsiderationsforanationaladultcongenitalheartdiseasedatabase AT sarapasquali operationalandethicalconsiderationsforanationaladultcongenitalheartdiseasedatabase AT curtjdaniels operationalandethicalconsiderationsforanationaladultcongenitalheartdiseasedatabase AT michaelpernick operationalandethicalconsiderationsforanationaladultcongenitalheartdiseasedatabase AT jamesnkirkpatrick operationalandethicalconsiderationsforanationaladultcongenitalheartdiseasedatabase AT michellegurvitz operationalandethicalconsiderationsforanationaladultcongenitalheartdiseasedatabase |