The Centers for Medicare & Medicaid Services (CMS) is implementing a significant update to its system for collecting hospice patient data, a move poised to reshape how end-of-life care is assessed and managed within the federal healthcare framework. Effective September 9, 2026, with routine uses taking effect on October 9, 2026, CMS is modifying an existing system of records, formerly known as the "Hospice Item Set (HIS) System." This revamped system will now operate under the name "Hospice Outcomes and Patient Evaluation (HOPE)" and introduces critical enhancements designed to improve patient care and data integrity.
Transition to Real-Time Data Collection
The most prominent change within the HOPE system is the inclusion of real-time data collection from hospice providers. Previously, data submission was primarily tied to patient admissions and discharges. Under the new protocol, information will be gathered during scheduled patient assessments while beneficiaries are actively receiving hospice services. This shift is intended to provide a more current and comprehensive understanding of patient care needs, allowing for better care coordination and more accurate quality measurement. The data collection will utilize the HOPE tool and can also occur when entering information from a patient's medical records.
Updated Statutory Authority and Purpose
CMS has clarified the statutory authority underpinning the HOPE system, citing sections 1814(i)(5)(C) and 1861(dd)(2)(G) of the Social Security Act. This update refines the legal basis for the system's operations. The primary purpose of HOPE data collection is to address symptom management, improve the understanding of patient care needs, and facilitate coordinated patient care. Furthermore, the system supports the Hospice Quality Reporting Program (HQRP), collecting and compiling data to measure and eventually publish the quality of care provided to hospice patients. Secondary purposes include supporting regulatory, reimbursement, and policy functions, assisting federal and state agencies, aiding hospices with reporting requirements, and facilitating research related to end-of-life care and payment projects.
Refined Categories of Individuals and Records
The modified SORN refines the categories of individuals covered, specifying "hospice patients, most of whom are Medicare beneficiaries," and clarifying that individual providers refer to "sole practitioner" providers who are "Medicare-certified." The notice also removes contact persons for a hospice from the scope of personal identifiers covered under the Privacy Act, focusing instead on data about the hospice itself. For patient records, new data elements will be collected, including ethnicity, preferred language, and Medicare Beneficiary Identifier (MBI). The data element "gender" has been updated to "sex" for consistency. For sole practitioner providers, their signature will now be included in the records.
Expanded Data Sources
Understanding the source of data is crucial for accuracy and completeness. The HOPE system will now draw information from expanded sources beyond the hospice provider directly. These include the patient's caregivers and the hospice provider's direct observations and assessments of the patient. This broadening of sources is expected to provide a more holistic view of a patient's condition and care needs, complementing the real-time data collection during assessments.
Modified Routine Uses for Data Disclosure
The routine uses section, which governs how data can be shared without individual consent, has undergone several revisions. The updated SORN clarifies that routine uses are in addition to other disclosures authorized directly by the Privacy Act (5 U.S.C. 552a(b)). Specific routine uses have been refined to improve clarity: routine use 4 now explicitly authorizes disclosures to support research or payment initiatives, while routine use 5 details disclosures to Quality Improvement Organizations for review and outreach activities. A new routine use 6 describes disclosures to national accrediting organizations for Medicare deeming authority. Furthermore, disclosures to the Department of Justice or other adjudicatory bodies are broadened to include "litigation or other proceedings," and redundant language regarding data compatibility has been removed. The SORN also re-numbers breach response-related routine uses and updates the title of the accompanying note.
Enhanced Data Security and Access Protocols
CMS is bolstering its data security measures to protect the sensitive information within the HOPE system. Records are now explicitly stated to be "stored electronically," replacing the previous "on magnetic media" description. Additional safeguards include security guards, cameras, badges, two-factor authentication, intrusion detection systems, comprehensive privacy and security training, and secure destruction methods. In terms of record access procedures for individuals, the updated SORN no longer requires a Health Insurance Claim Number (HICN) or Social Security number (SSN) for identity verification. Instead, individuals must provide their current address, email or other contact information, signature, date and place of birth, and either a notarized signature or a statement signed under penalty of perjury. These changes reflect an ongoing effort to balance data accessibility for legitimate purposes with robust privacy protection and identity verification.
Conformance to Federal Standards
Finally, the SORN itself has been reformatted to comply with the "Full" SORN template prescribed by OMB Circular A-108, issued December 23, 2016. This reformatting ensures consistency and adherence to current federal guidelines for system of records notices, reflecting CMS's commitment to transparency and proper governance of sensitive personal information. The retention period for beneficiary records has also been updated to 10 years after cutoff, with longer retention authorized, aligning with updated disposition authority.
Overall, the modifications to the hospice data system represent a significant federal effort to modernize data collection practices, improve the quality of hospice care, and enhance accountability within the Medicare program, all while reinforcing privacy and security safeguards.
