Chairman Buchanan, Ranking Member Doggett, and members of the Committee, thank you for the opportunity to provide comments on how access to digital health data can help improve patient health and the challenges associated with adopting such technology. The American Association of Neurological Surgeons (AANS) and the Congress of Neurological Surgeons (CNS), which represent over 4,000
neurosurgeons in the United States, collaborate to advance the specialty of neurological surgery through education, research, and advocacy, while promoting the highest quality of patient care.
The AANS and the CNS appreciate the Committee’s interest in this vital topic and see great promise in the ability of digital health data to transform our healthcare system. The application of digital technologies in healthcare, along with the integration of digital data from various sources, has the potential to enhance patient outcomes, increase efficiency, and reduce healthcare-related costs. Importantly, digital tools have
the potential to track care longitudinally and support transitions of care, which is crucial for surgeons who may not have a continuous relationship with a patient. Digital health data can also support improved healthcare research and recruitment for research-related purposes. Additionally, if thoughtfully designed, digital health tools have the potential to enhance care delivery, improve patient access (particularly among
rural and underserved populations), increase patient engagement, and improve patient and clinician satisfaction.
Interoperability and Information Sharing
The AANS and the CNS appreciate federal actions over the last 10 years to promote interoperability and prevent information blocking, which helps to support more coordinated, safer, and higher-quality patient care. However, patients and clinicians still face challenges accessing and exchanging data, particularly those in small and/or private practices that lack the resources of a large health system.1, 2, 3 4,5,6,7More action
is needed to ensure a truly seamless and safe data exchange environment that is accessible to all care providers, regardless of size or resources. Only in that environment can we harness and benefit from the power of digital health data.
Adoption of Imaging Standards
One critical and ongoing challenge is that there are currently no regulations requiring electronic health record (EHR) and imaging archive system vendors to support the secure, efficient, and interoperable electronic exchange of images between healthcare entities, as there are for general clinical data. As a result, imaging-related data exchange is limited to the imaging report (i.e., text). Remarkably, individuals can access their money through any ATM in almost any place in the world, yet patients cannot move their images to a facility down the road without having to complete numerous forms, wait numerous days, and still only be given a CD that may or may not be readable on another provider’s computer. The ongoing exclusion of imaging from federal standards that govern electronic data exchange creates a critical gap that burdens
patients, delays care, and leads to unnecessary repeat imaging and radiation exposure. The AANS and the CNS support the addition of Digital Imaging and Communications in Medicine (DICOM) images to federal interoperability standards, specifically the United States Core Data for Interoperability (USCDI), to promote standardized and interoperable image sharing across healthcare systems.
Patient Matching
The AANS and the CNS also support a national framework to improve patient matching, which would improve electronic health information exchange, as well result in more effective and efficient care delivery by minimizing duplicative tests and procedures, linking clinical results across providers and settings, ensuring greater patient safety, and supporting more comprehensive and longitudinal research. Patient matching would also help ensure more accurate attribution of patients and episodes of care to providers for the purposes of performance-based payment models and metrics.
Clinical Data Registries
Although the 21st Century Cures Act8 included a provision for the creation of a real-world evidence (RWE) task force within the Department of Health and Human Services (HHS), little progress has been made over the last several years in this regard. The AANS and the CNS continue to believe that real-world data sources, such as properly designed prospective clinical data registries, are more effective alternatives to costly and
time-consuming randomized controlled trials. In addition to utilizing registry data to expedite innovation and device approval, registry expertise is also beneficial for post-market surveillance. Clinical data registries are equally valuable in the context of quality reporting and performance measurement, where they capture more granular and patient-focused data points, including patient-reported outcomes, compared to more
limited administrative claims datasets. They also support longitudinal tracking of surgical patients and provide more meaningful and real-time performance feedback compared to what the Centers for Medicare and Medicaid Services (CMS) can provide under its federal quality programs.
Organized neurosurgery has almost 20 years of experience in developing high-quality prospective data registries. This work led to the establishment of the NeuroPoint Alliance (NPA) in 2008, aimed at improving the quality of neurosurgical care.9 The NPA supports evidence development, performance assessment, comparative effectiveness studies, and adoption of new treatments into routine clinical practice. Currently, the AANS and the CNS, through the NPA, are involved in various clinical data collection projects, including multispecialty projects such as the American Spine Registry (a collaborative project with the American Academy of Orthopaedic Surgeons), an initiative with the Society of NeuroInterventional Surgery to establish a single registry for neurovascular surgical procedures and a prospective registry for stereotactic radiosurgery procedures (with the American Society for Radiation Oncology) to assess patient care in neurosurgery and radiation oncology. We have also established a registry to determine neurosurgical care for patients with primary and metastatic brain tumors.
Read full position statement here.
