The Data Hub
A Source for Real-World Hematology Data
Making Data-Driven Improvements to Care, Together
SCD Learning Community Global Aims
In October 2020, the Office of Minority Health at the U.S. Department of Health and Human Services (HHS) awarded ASH a two-year grant for $2 million to support the creation of a sickle cell disease clinical data platform and a Sickle Cell Disease Learning Community. The ASH Research Collaborative™ worked closely with the Learning Networks Program at the James M. Anderson Center for Health Systems Excellence at Cincinnati Children’s Hospital Medical Center to design and implement the program. The Learning Community will soon be open to all participating sites in the Data Hub’s Sickle Cell Disease Program.
The Learning Community currently focuses on strategies to improve the reliable use of disease-modifying therapies and the use of co-developed pain care plans. A new effort is underway to focus on helping patients transition from pediatric to adult care. These focus areas are common challenges expressed by sickle cell disease community members.
Additional Information
Advisory Groups
Technical Advisory Group
Technical Advisory Group:
The purpose of this group is to provide technical and programmatic advice to the grant project team on the creation of the Data Hub’s Sickle Cell Disease Data Program and Learning Community.
Roles and Responsibilities
As a representative body of the broader sickle cell disease community, the Technical Advisory Group will stay informed and engaged as the project progresses to ensure the project benefits from community buy-in from its inception.
Other responsibilities include:
- Provide strategic input to the Data Hub Sickle Cell Disease Subcommittee to ensure the Data Hub features support the platform design and Learning Community
- Engage with the Learning Community Design Workgroup to inform the development of the Learning Community
- Provide strategic input to the development of a sustainability plan.
- Develop a communications plan for patients and families on how patient information is collected and used by the Data Hub platform and Learning Community.
- Provide ongoing feedback and evaluation of the project’s activities
Composition
The member composition of the Technical Advisory Group includes sickle cell disease stakeholders representing sickle cell disease community advocates (people living with sickle cell disease and/or their family member/caregiver), clinicians, quality improvement experts, caregivers, researchers, and other health care leaders.
Technical Advisory Group Member Competencies
- Sickle cell disease clinical care providers
- Patient and caregiver representatives
- Data science
- Quality improvement
- Health systems design and innovation
- Data security and privacy
- Sponsors, payors, and funders (e.g., Centers for Disease Control and Prevention, insurers)
Regular reporting and communication mechanisms:
The Grant Leadership Team will frequently report to the Technical Advisory Group on project progress and will request feedback from the Technical Advisory Group on various aspects of the project.
Meeting Frequency:
The Technical Advisory Group will meet approximately six times per year or more frequently as needed.
Roster
|
Name |
Affiliations |
|
Alexis Thompson, MD, MPH |
The Children’s Hospital of Philadelphia, ASH RC Data Hub Sickle Cell Disease Subcommittee Chair |
|
William Wood, MD, MPH |
University of North Carolina, ASH RC Data Hub Oversight Group Chair |
|
Mary Applegate, MD |
Medicaid Medical Directors (Medical Director, Ohio Medicaid) Centers for Disease Control and Prevention |
|
Cheryl Boyce, PhD |
National Institute of Health |
|
Clark Brown, MD, PhD |
Children’s Hospital of Atlanta |
|
David Dandridge |
Sickle Cell Disease Community Representative |
|
Minochy Delanois |
Sickle Cell Disease Community Representative |
|
Jane Hankins, MD, MS |
St. Jude Children’s Research Hospital |
|
Mary Hulihan, DrPH |
Centers for Disease Control and Prevention |
|
V. Robyn Kinebrew |
Sickle Cell Disease Community Representative |
|
Robert Liem, MD |
ASH Sickle Cell Disease Guideline Chair |
|
Edith Mitchell, MD, MACP, FCPP, FRCP |
National Medical Association |
|
Sarah Reeves, PhD, MPH |
University of Michigan |
|
Maria Rivera |
Sickle Cell Disease Community Representative |
|
Derek J. Robinson, MD, MBA, FACEP, CHCQM |
Blue Cross Blue and Shield of Illinois |
|
Ashima Singh, PhD, MS |
Medical College of Wisconsin |
Design Work Group
Design Work Group:
The purpose of this group is to create the design for a community of patients, parents, clinicians, researchers, and other key stakeholders who will work together to improve clinical practice, support research, and accelerate innovation to address health outcomes of sickle cell disease.
Roles and Responsibilities
- Participate as full partners in this user-centered design process.
- Inform the design of a Learning Community capable of transforming outcomes for children and adults living with sickle cell disease and accelerating innovation and research.
- Develop and refine a purpose statement for the lifespan Learning Community.
- Provide guidance to prioritize key areas for improvement.
- Identify process and outcome measures to guide improvement.
- Provide feedback to ensure that Data Hub measures and features support the Learning Community.
- Suggest evidence-informed best practices for achieving better health outcomes.
- Provide feedback to develop the tools, resources, and infrastructure necessary to launch a Learning Community.
- Provide ongoing feedback and evaluation of the design process.
Composition
The composition of the Design Work Group includes sickle cell disease stakeholders representing people living with sickle cell disease and/or their family member/caregiver), clinicians, quality improvement experts, caregivers, and researchers. The majority of participants will have a connection with one of the Sickle Cell Disease Data Hub Program sites.
Design Work Group Competencies
Members will represent at least one of the following groups:
- Sickle cell disease clinical care providers
- Patient and caregiver representatives
- Community connection with Sickle Cell Disease community
- Associated with one of the ASH Sickle Cell Disease Data Hub sites
Regular reporting and communication mechanisms:
The Grant Leadership Team will report to the Technical Advisory Group and appropriate ASH Committees on project progress and will request feedback from the Technical Advisory Group on various aspects of the project.
Meeting Frequency:
The Design Work Group will meet quarterly with some subgroups meeting more frequently as needed.
Roster
|
Name |
Affiliations |
|
Alexis Thompson, MD, MPH |
The Children’s Hospital of Philadelphia, ASH RC Data Hub Sickle Cell Disease Subcommittee Chair |
|
William Wood, MD, MPH |
University of North Carolina, ASH RC Data Hub Oversight Group Chair |
|
Biree Andemariam, MD |
University of Connecticut |
|
Amanda Brandow, MD |
Medical College of Wisconsin |
|
Mary Brown, MD |
California Sickle Cell Disease Foundation at MLK South Central Clinic |
|
Rogelle Hackworth |
Sickle Cell Disease Community Representative |
|
Tiahna Hughes |
Sickle Cell Disease Community Representative |
|
Dawn Johnson, MD |
Dallas Children’s Hospital |
|
Patricia Kavanagh, MD |
Boston Medical Center |
|
Kaleb Kinebrew |
Sickle Cell Disease Community Representative |
|
Kameron Kinebrew |
Sickle Cell Disease Community Representative |
|
Andrea Matthews |
Sickle Cell Disease Community Representative |
|
Nilda Navedo |
Sickle Cell Disease Community Representative |
|
Alicia Nero, MD |
University of Texas Southwestern Medical Center |
|
Charles Quinn, MD |
Cincinnati Children’s Hospital Medical Center |
|
Jean Raphael, MD |
Texas Children’s Baylor College of Medicine |
|
JJ Strouse, MD |
Duke University |
|
Marsha Treadwell, PhD |
University of California San Francisco |
|
Elliott Vichinsky, MD |
University of California San Francisco Benioff Children’s Hospital Oakland |
|
Kevin Wake |
Uriel E. Owens Sickle Cell Disease Association of the Midwest |
|
Ted Wun, MD |
UC Davis |
Project Timeline
Webinars
Useful Readings
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.
Participating sites have access to their own confidential Data Hub Site Portal.
Site Portal tools include:
- Cohort Finder
- Data Export Engine
- Data Quality Report
- Data Submissions Tracker
- Disease-Specific Dashboard
- User Management
Sickle Cell Disease Site Portal
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 SCD.
The disease-specific Dashboard presents metrics across seven clinical categories that are most valuable for SCD researchers and clinicians to track.
These metrics were established by the Data Hub’s SCD Subcommittee through an iterative process informed by clinicians, regulators, payers, health technology experts, biotech companies, the U.S. Food and Drug Administration and the National Heart, Lung, and Blood Institute.
Below are the clinical categories:
- Acute Care Events
- Cerebrovascular
- Other Sequelae
- Patient Characteristics
- Pharmacotherapy
- Renal
- Transfusion
View the metrics that sites can track on the Disease-Specific Dashboard
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.