WWW.ASHRESEARCHCOLLABORATIVE.ORG
The ASH Research Collaborative (ASH RC) is a nonprofit organization established by the American Society of Hematology in 2018 to foster collaborative partnerships that accelerate progress in hematology, with the goal of improving the lives of people affected by blood diseases. A description of the processes involved in developing core features of the ASH RC was published recently in Blood Advances.
“We are hoping with this initiative to provide an enduring resource and program for the hematology community – patients, families, clinicians, researchers, administrators, and many others – that is designed to accelerate research in hematology and improve clinical practice,” said lead author William Wood, MD, MPH, of the University of North Carolina at Chapel Hill.
According to Dr. Wood, the ASH RC plans to construct networks of sites to collect and share real-world data and improve collaboration. “In doing so, we hope to realize the National Academy of Medicine’s vision of a learning health system while facilitating the discovery of new treatments and cures,” he said.
Two major initiatives comprise the foundation of the ASH RC: its Data Hub and Clinical Trials Network (CTN), both of which are currently operational.
The Data Hub is a technology platform that facilitates the exchange of information by aggregating research-grade data on hematologic diseases. Participants in the Data Hub include health care systems, hospitals, and outpatient practices, all of which can contribute individual patient-level data through electronic health record (EHR) data integration. Other data sources will soon be incorporated into the platform.
Disease-specific data models are built so that data “can be assembled into analytic datasets and used to enhance clinical care through dashboards and other mechanisms,” the authors wrote. To date, models have been constructed in sickle cell disease (SCD) and multiple myeloma (MM) using the Observational Medical Outcomes Partnership Common Data Model and Fast Healthcare Interoperability Resources standards.
For the next few years, the platform will capture long-term data for large cohorts of U.S. individuals with SCD and MM, expanding to other hematologic conditions in the future. Ultimately, the Data Hub will be used for hypothesis-generating research to produce real-world evidence in hematologic malignancies, which may further inform drug development and improve clinical care.
“The Data Hub also provides a framework for the development of disease-specific learning communities and the testing of health care delivery strategies,” according to the authors.
The CTN, initially developed for SCD clinical trials, aims to streamline operations and create other efficiencies in multicenter trial execution to expedite the development of treatments and facilitate innovation in clinical trial research.
The ASH RC includes multiple stakeholders, including patients, clinicians, and industry professionals. The intention is to have broad stakeholder representation, Dr. Wood explained.
While potentially innovative, the research initiative is still in its early stages, Dr. Wood said. “We are paying close attention to critical issues of data quality, application of new technologies to leverage maximum value from structured and unstructured data aggregation, developing and influencing new approaches to clinical documentation and decision support, and designing appropriate clinical practice improvement targets and change packages as part of our learning communities,” he commented.
Dr. Wood added that embedded within these new initiatives are several “untested hypotheses” and opportunities for discovery. “We will continue to learn as we go, with an eye toward continuously improving the quality of the resources that we develop and the services that we deliver,” he said.
Study authors report relationships with the ASH Research Collaborative.
Reference
Wood WA, Marks PW, Plovnick RM, et al. ASH Research Collaborative: A real-world data infrastructure to support real-world evidence development and learning healthcare systems in hematology [published online ahead of print, 2021 Oct 21]. Blood Adv. doi: 10.1182/bloodadvances.2021005902.
