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IMPACTing the Future: Are we on the Right Track?
1David Wallace - Starr Foundation Professor of Pediatric Cardiology, Division Chief of Pediatric Cardiology, Weill Cornell Medicine, Director Pediatric Cardiac Catheterization, NewYork-Presbyterian Komansky Children's Hospital, 525 East 68th Street, Room F-677, New York, NY, 10065, USA. rjh3001@med.cornell.edu.
Pediatric Cardiology
|January 6, 2022
Summary
Difficulties accessing data and a lack of autonomy have disengaged the congenital cardiology community from the IMPACT registry. This article identifies key problems and proposes future solutions to improve its utility for patients and providers.
Area of Science:
- Cardiology
- Medical Informatics
- Patient Registries
Background:
- The IMPACT registry has collected data for over ten years.
- The congenital cardiology community has become disengaged due to data access issues and lack of autonomy.
- The registry's value to patients and providers is currently being questioned.
Purpose of the Study:
- To identify specific problems hindering the IMPACT registry's effectiveness.
- To gather insights from interventional congenital cardiologists regarding these issues.
- To propose actionable solutions for the future improvement of the IMPACT registry.
Main Methods:
- An online survey was conducted among interventional congenital cardiologists.
- The survey focused on identifying challenges related to data access and autonomy within the IMPACT registry.
- Qualitative data on perceived problems and potential solutions were collected.
Main Results:
- Key issues identified include significant barriers to data access.
- A notable lack of autonomy for users was reported.
- These factors have contributed to a decline in community engagement and perceived usefulness.
Conclusions:
- Addressing data access and autonomy is crucial for revitalizing the IMPACT registry.
- Implementing proposed solutions can enhance the registry's value for congenital cardiology.
- Future efforts should focus on user empowerment and data accessibility to ensure long-term success.
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