The Data Hub
A Source for Real-World Hematology Data
Accelerating Solutions for the Multiple Myeloma Community
Real-world data related to people living with multiple myeloma supports faster development of treatments — and potentially cures — that are more targeted to the various genetic combinations that drive disease.
Through the collection and analysis of data on diagnosis and treatment, the Data Hub’s Multiple Myeloma Program aims to accelerate progress in research and improve the lives of those affected by multiple myeloma.
Data Captured
The Data Hub uses clinical concepts and data elements for electronic health record codes that align with the most recent United States Core Data for Interoperability (USCDI) standards. This minimizes the data collection burden for participating sites, as all certified electronic health record vendors, providers, and payers are already required to make these elements available for data exchange.
These USCDI entities are included in collaborating sites’ data submissions:
- Allergies & Intolerances – All allergies and intolerances in the medical record
- Assessment and Plan of Treatment – Assessments and plans of treatment back to 2015 for initial transmission, and then all new assessments and plans of treatment moving forward
- Care Team Member(s) – All care team information back to 2015 for initial transmission, and then all new care team information moving forward
- Clinical Notes – All clinical notes back to 2015 for initial transmission, and then all new notes moving forward
- Goals – All goals back to 2015 for initial transmission, and then all new goals moving forward
- Health Concerns – All health concerns back to 2015 for initial transmission, and then all new health concerns moving forward
- Immunizations – All immunizations in the medical record for each patient
- Laboratory – All labs back to 2015 for initial transmission, and then all lab medications tests moving forward
- Medications – All medications back to 2015 for initial transmission, and then all new medications moving forward
- Patient Demographics – All data for historical records and for each new record moving forward
- Problems – All problems (resolved and unresolved) in the medical record for each patient
- Procedures – All procedures in the medical record for each patient
- Smoking Status – All smoking status information in the medical record
- Vital Signs – All vital signs back to 2015 for initial transmission, and then all new vital signs moving forward
We aim to make submission easy through our data submission pathways and models.
Click the Multiple Myeloma Site Portal Image to Zoom
Each participating site in the Multiple Myeloma Program has access to a confidential Data Hub Site Portal.
The Site Portal tools include:
- Cohort Finder
- Data Export Engine
- Data Quality Report
- Data Submissions Tracker
- Disease-Specific Dashboard
- User Management
Near real-time observational summaries are available on the disease-specific Dashboard. Sites can track their own patients, analyze outcomes, and identify ways to improve the quality of care provided to those living with multiple myeloma.
The disease-specific Dashboard presents metrics that focus on diagnosis and staging as well as COVID-19 vaccinations, infections, hospitalizations, therapies, and indications. These key metrics were established through an iterative process informed by an expert workgroup that included input from clinicians, health technology experts, and the U.S. Food and Drug Administration (FDA). These metrics can be further filtered for specific research queries.
Examining the Burden of COVID-19 on the Multiple Myeloma Community
The Data Hub’s Multiple Myeloma Program also includes a COVID-19 research effort funded by the Centers for Disease Control and Prevention (CDC). The goal is to inform decision-making related to COVID-19 infection, prevention, and treatment in those living with multiple myeloma.
The Data Hub is capturing HIPAA-compliant standard clinical practice data, including information on COVID-19 infection and vaccination from participating sites (local registry and electronic health record data).
The following metrics are included on participating sites’ dashboards:
- COVID-19 Vaccination Doses: Rate of COVID-19 vaccination among individuals at participating institutions
- COVID-19 Infection Rate: Rate of participants with a documented COVID-19 infection
- COVID-19 Hospitalization Rate: Rate of hospitalized participants with active multiple myeloma and one or more COVID-19 infections
- COVID-19 Therapies & Indications: Frequency and indications of COVID-19 therapies given to participants with active cancer
ASH RESEARCH COLLABORATIVE
The ASH Research Collaborative (ASH RC) is a non-profit organization established by the American Society of Hematology (ASH) in 2018 to improve the lives of people affected by blood diseases by fostering collaborative partnerships to accelerate progress in hematology.