Put It in the Tracking Database!"Using REDCap to Enhance Patient Outcome Tracking in a Tertiary Genetics Clinic
Education and Research Strategies
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Primary Categories:
- Health services and Implementation
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Secondary Categories:
- Health services and Implementation
Introduction:
Quality improvement (QI) in genetics clinics relies on effective data collection, tracking, and analysis. REDCap (Research Electronic Data Capture) is a secure, web-based tool increasingly used for clinical QI projects. While REDCap offers significant advantages for genetic evaluations and phenotyping, its complexity presents challenges due to the nature of genetic data and clinical workflows. This study details the development of a REDCap-based patient registry at a tertiary genetics center, capturing over 6,000 unique genetic counseling visits over four years. In addition to improving clinical care, the system has facilitated research.
This study aims to evaluate the benefits and challenges of using REDCap to develop a QI tracking database for patient evaluations, phenotyping, genotype capture, and tracking pending genetic tests across multiple commercial laboratories. .
Methods:
A REDCap-based tracking system was implemented to support genetic evaluations, phenotyping, diagnostic testing, and follow-up care. The system collects demographic information, clinical features, genetic test results, and patient outcomes. Data fields were designed with multiple-choice and calendar formats to standardize collection and simplify future queries. The system also includes reports for commonly requested data. The system’s usability, data accuracy, workflow integration, and impact on clinical decision-making were evaluated over a 12-month period. Research outputs were tracked, including abstracts and publications.
Results:
Benefits:
Pitfalls:
Conclusion:
REDCap is a powerful tool for QI tracking in genetics clinics, offering significant benefits such as data standardization, real-time monitoring, and improved follow-up care. The system has also supported research productivity, leading to numerous abstracts and publications. However, challenges related to genetic data complexity, EHR integration, user training, and data security must be addressed to optimize functionality. Future efforts should focus on refining the user interface, improving EHR integration, and ensuring ongoing user training to enhance both clinical care and research productivity.
Quality improvement (QI) in genetics clinics relies on effective data collection, tracking, and analysis. REDCap (Research Electronic Data Capture) is a secure, web-based tool increasingly used for clinical QI projects. While REDCap offers significant advantages for genetic evaluations and phenotyping, its complexity presents challenges due to the nature of genetic data and clinical workflows. This study details the development of a REDCap-based patient registry at a tertiary genetics center, capturing over 6,000 unique genetic counseling visits over four years. In addition to improving clinical care, the system has facilitated research.
This study aims to evaluate the benefits and challenges of using REDCap to develop a QI tracking database for patient evaluations, phenotyping, genotype capture, and tracking pending genetic tests across multiple commercial laboratories. .
Methods:
A REDCap-based tracking system was implemented to support genetic evaluations, phenotyping, diagnostic testing, and follow-up care. The system collects demographic information, clinical features, genetic test results, and patient outcomes. Data fields were designed with multiple-choice and calendar formats to standardize collection and simplify future queries. The system also includes reports for commonly requested data. The system’s usability, data accuracy, workflow integration, and impact on clinical decision-making were evaluated over a 12-month period. Research outputs were tracked, including abstracts and publications.
Results:
Benefits:
- Data Standardization and Accessibility: REDCap facilitated standardized data collection, creating a centralized, accessible repository that improved collaboration and continuity of care, which is essential in genetic counseling and multidisciplinary team management.
- Real-Time Data Monitoring: Clinicians could query the system in real time to track patient progress, assess diagnostic outcomes, and ensure adherence to clinical guidelines, improving data-driven clinical decision-making.
- Ease of Customization: REDCap’s flexibility allowed for tailored data fields specific to genetic evaluations, ensuring accurate tracking of both standard and rare genetic conditions.
- Tracking Pending Test Results: REDCap provided real-time tracking of pending genetic tests, prompting timely follow-ups and reducing delays, which enhanced accountability in patient care.
- Improved Follow-Up Care: Automated reminders and workflows improved coordination and timely follow-up care, reducing the risk of missed interventions.
- Research Productivity: The database facilitated over 50 abstracts presented at national and international scientific meetings and contributed to the publication of more than 20 papers, demonstrating REDCap’s dual benefit for clinical care and research.
Pitfalls:
- Complexity in Data Entry and Maintenance: The complexity of genetic data, such as variant interpretation and multi-level phenotyping, required careful curation. Ensuring consistent data entry across diverse users, including genetic counselors and clinicians, was challenging.
- Integration with Existing Systems: Integrating REDCap with the clinic’s existing Electronic Health Record (EHR) system was difficult, leading to occasional data duplication and inefficiencies. Improved EHR integration is essential for streamlining workflows.
- User Training and Engagement: Despite comprehensive training, some users found the interface cumbersome, particularly when managing complex genetic data. Ongoing user education and interface improvements are necessary to optimize usability.
- Data Security and Privacy Concerns: Handling sensitive genetic data raised concerns regarding HIPAA compliance and data security. Regular audits were necessary to ensure adherence to privacy standards and maintain patient confidentiality.
Conclusion:
REDCap is a powerful tool for QI tracking in genetics clinics, offering significant benefits such as data standardization, real-time monitoring, and improved follow-up care. The system has also supported research productivity, leading to numerous abstracts and publications. However, challenges related to genetic data complexity, EHR integration, user training, and data security must be addressed to optimize functionality. Future efforts should focus on refining the user interface, improving EHR integration, and ensuring ongoing user training to enhance both clinical care and research productivity.