Hospice is vital to the U.S. healthcare system. Consumers need access to hospice’s quality data to make the most appropriate decisions about choosing a hospice. According to a recent HIMSS article, the “volume of healthcare data generated range(s) around 30% of the entire world's stored data”(Harper 2017). This same article goes on to make the case that these data are critical to the “clinical, financial, and operational value for the healthcare industry”(Harper 2017). This access to useful data is especially true in hospice where decisions for choosing a hospice typically occur quickly and at a stressful time for the patient, family, caregivers, and loved ones.
Recognizing the value of healthcare data across the spectrum of care, data analytics, and the use of informatics to interpret the data, it makes sense to explore one of the most critical components of our healthcare system, hospice services. Hospice care is a type of care that focuses on palliation of a terminally ill person’s pain and symptoms, rather than disease cure. More formally, to be eligible to elect hospice care under Medicare, an individual must be entitled to Part A of Medicare and be certified as being terminally ill. An individual is considered to be terminally ill if the medical prognosis is that the individual’s life expectancy is 6 months or less if the illness runs its normal course (Medicare Benefit Policy Manual, Chapter 9). Hospice care “improves patient-centered outcomes such as pain, depression, and other symptoms; patient and family satisfaction; and the receipt of care in the place that the patient chooses”(Meier 2011). What is not relatively well-understood is the value of care provided to hospice patients (e.g., are they receiving the most effective care)(Meier 2011).
A recent analysis from Milbank Quarterly states “The seriously ill and those with multiple chronic conditions and functional impairment constitute about 10 percent of all patients in the United States but account for well over half of the nation’s health care costs” (Meier 2011). In 2015, the Centers for Medicare & Medicaid Services (CMS) published data that indicated Medicare had 4,021 hospice providers, over 1.4 million hospice beneficiaries, and almost $16 billion in payments for calendar year 2015 (CMS.hhs.gov 2017). Because of the importance of hospice services, the value it provides to CMS beneficiaries, and the potential for incurring high costs, CMS began reporting quality data on providers of hospice care.
Understanding Hospice Providers
In 2010, the Quality Improvement Organizations in North and South Carolina were engaged by CMS to study the use of hospice care among Medicare beneficiaries (Schenck et al. 2010). The project team found that each year, nearly 1 million Medicare beneficiaries receive hospice care from over 3000 hospice providers across the United States (Schenck et al. 2010). To provide transparency to beneficiaries and consumers on the quality of hospice care in the United States, CMS published its latest public reporting website, Hospice Compare, in August of 2017. The goals of Hospice Compare are twofold: to help consumers compare hospice providers on their performance and assist in making decisions that are right for them; and to encourage hospices to improve the quality of care provided to hospice patients, and caregivers.
This site reports information on approximately 3,800 hospice providers across the nation, providing a snapshot of the quality of care delivered by each facility. Hospice providers can be compared on important indicators of quality, such as responsiveness to treatment preferences, pain screening, and whether patients’ beliefs and values were addressed in the course of receiving hospice services. The release of this website continues a practice at CMS of making provider performance information publicly available, including for hospitals, nursing homes, and dialysis facilities, supporting the Agency’s role in “putting people first.”
Transparency of accurate and reliable data on the quality and value of care is a foundational component of the transformation to value-based care. The quality measures currently on Hospice Compare are all endorsed by the National Quality Forum (NQF) and are derived from data on the Hospice Item Set, a set of standardized data items completed on each patient at admission and discharge from hospice (HIS, CMS.hhs.gov, 2017 and NQF, 2017).
As performance data are increasingly used for payment and for public reporting, it is critical that these data, whether self-reported from assessment instruments, derived from electronic health records, or based on administrative claims or patient surveys, be as valid and reliable as possible. Most CMS programs and Compare sites include quality measures derived from each of these data sources, and CMS generally uses NQF-endorsed quality measures and conducts data validation for all of its programs. However, challenges to data validation remain, as this activity is very time- and resource-intensive. Another challenge is the burden of reporting quality measures, particularly those derived from electronic sources. To address these issues, CMS has adopted user-centered design practices in partnership with clinicians, patients, consumers, health IT vendors, registries and others to improve and simplify the development, implementation, and experience of using and reporting quality measures. The goal is to have a parsimonious set of valid and reliable measures that are meaningful to beneficiaries, caregivers, and providers, and can drive improvement in the customer experience.
CMS.hhs.gov (2017) Medicare Hospice Transparency Data (CY2015).
Harper, E. (2017) Making the Case for Data Analytics. http://www.himss.org/news/making-case-data-analytics (last accessed 2017-08-17).
Medicare Benefit Policy Manual, Chapter 9. https://www.cms.gov/Regulations-and-Guidance/Guidance/Manuals/downloads/bp102c09.pdf
Meier, D. E. (2011) Increased Access to Palliative Care and Hospice Services: Opportunities to Improve Value in Health Care. Milbank Quarterly, 89, 343-380.
Schenck, A. P., F. S. Rokoske, D. D. Durham, J. G. Cagle & L. C. Hanson (2010) The PEACE Project: Identification of Quality Measures for Hospice and Palliative Care. Journal of Palliative Medicine, 13, 1451-1459.
National Quality Forum – search for endorsed measures by measure
About the Contributors
Kate Goodrich, MD, MHS, director of the Center for Clinical Standards and Quality (CCSQ) and CMS Chief Medical Officer (CMO), joined the Centers for Medicare and Medicaid Services (CMS) in September 2011. This Center is responsible for over 20 quality measurement and value-based purchasing programs, implementation of the new Quality Payment Program and the Improving Medicare Post-Acute Care Transformation Act, quality improvement programs in all 50 states, clinical standards and survey and certification of all providers across the nation, and all coverage decisions for treatments and services for CMS.
Stuart Rabinowitz, MBA, MSHI is the Division Director of IT & Data Analysis for Strategic Health Solutions. Stuart holds an undergraduate degree from Temple University, an MBA from Lehigh University, and a Master’s of Science in Health Informatics from the University of Illinois at Chicago.
Maria Murray, PhD is a Senior Consultant in IMS Government Solutions, part of QuintilesIMS. She received her PhD from the University of Pennsylvania in Bioengineering. Previously, she worked as an AIMBE Policy Scholar at the Center for Devices and Radiological Health at the US Food and Drug Administration and Deloitte Consulting.