CMS Renames Hospice Data System to HOPE with Live Tracking
Published Date: 9/9/2026
Notice
Summary
In accordance with the Privacy Act of 1974, as amended, the Department of Health and Human Services (HHS) is modifying an existing system of records maintained by the Centers for Medicare & Medicaid Services (CMS), titled "Hospice Item Set (HIS) System," System No. 09-70-0548. The amended System of Records Notice (SORN) reflects changes to now include real time data collection at the time of patient assessments to improve the understanding of patient care needs and care coordination. CMS is also changing the name of the system of records to "Hospice Outcomes and Patient Evaluation (HOPE)" and making other modifications which are explained in the Supplementary Information section. The HOPE system collects standardized hospice patient data to measure and improve care quality, support regulatory and reporting requirements, and enable research and policy functions.
Analyzed Economic Effects
6 provisions identified: 2 benefits, 2 costs, 2 mixed.
Broader routine disclosure permissions
The SORN revises routine uses to authorize disclosures of HOPE records to researchers, Quality Improvement Organizations, national accrediting organizations (e.g., The Joint Commission), Federal and state agencies and fiscal agents, contractors for fraud detection, the Department of Justice or courts, and for breach response. Routine uses are effective October 9, 2026.
Real-time hospice data at assessments
CMS will collect hospice patient data in real time at the time of patient assessments (not only at admission/discharge) through the renamed HOPE system. The change is effective upon publication (September 9, 2026) and applies to data collected by Medicare-certified hospices during scheduled assessments or other times while the patient is receiving hospice services.
New personal and provider data collected
The HOPE system will include additional data elements such as ethnicity, preferred language, Medicare Beneficiary Identifier (MBI), and changes the field "gender" to "sex"; records about sole practitioner providers now include signature and tax identification. These data elements will be collected and stored in the system of records.
Electronic storage and long retention rules
All HOPE records are stored electronically and are subject to the NARA disposition authority DAA-0440-2015-0007-0001 (Bucket 5), which provides for retention of beneficiary claims records for 10 years after cutoff; the notice also states beneficiary claims records are currently subject to a DOJ document preservation order and must be preserved indefinitely pending further notice.
Stricter identity verification for record access
To access, amend, or be notified about records in HOPE, individuals must submit full name, current address, email or other contact, signature, and date and place of birth; the signature must be notarized or accompanied by a statement signed under penalty of perjury. The SORN no longer lists providing HICN or SSN as part of these procedures.
HOPE name and reporting purpose clarified
The system formerly named the Hospice Item Set (HIS) is renamed to Hospice Outcomes and Patient Evaluation (HOPE); the SORN states HOPE collects standardized hospice patient data to measure and improve care quality, support the Hospice Quality Reporting Program (HQRP), regulatory and reimbursement functions, and to enable research and policy work. These functions apply to data collected by Medicare-certified hospice providers.
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