Database Profiles for the ACT Index Driving social change and quality improvement

Database Profiles for the ACT Index Driving social change and quality improvement

2 Name of database Who owns the database? Who publishes the database? Who funds the database? The Dartmouth Atlas of Health Care The Dartmouth Institute for Health Policy and Clinical Practice The Dartmouth Institute for Health Policy and Clinical Practice A coalition of funders led by the Robert Wood Johnson Foundation, including the WellPoint Foundation, the United Health Foundation, the California HealthCare Foundation, and the Charles H. Hood Foundation The Dartmouth Atlas What type of data is used? What patient population is reflected in the database? Medicare Claims Data all Medicare beneficiaries who died between the ages of 66 and 99 Policymakers, the media, health care analysts and others to improve Who is the database intended for? their understanding of the efficiency and effectiveness of our health care system What part of the database is publicly available? All First year data was published 2001 Latest year data was published 2014 How frequently is data updated annually 3,436 Hospital Service Areas (HSAs) sample size/number of transactions HSAs represent local health care markets for community-based inpatient care. Geographic coverage HSA http://www.dartmouthatlas.org/downloads/methods/research_method More details s.pdf

3 Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) Name of database Who owns the database? Who publishes the database? Who funds the database? What type of data is used? What patient population is reflected in the database? Who is the database intended for? HCAHPS What part of the database is publicly all available? First year data was published 2007 Latest year data was published 2015 How frequently is data updated annually sample size/number of transactions Geographic coverage More details CMS (the Centers for Medicare and Medicaid Services) CMS CMS Patient satisfaction survey The HCAHPS survey is administered to a random sample of adult patients discharged from the hospital the survey includes patients covered by Medicare, Medicaid, commercial insurance, and others. It includes many hospital discharges of patients who do not require advanced care or suffer from chronic diseases such as mothers who just delivered a baby, burn victims, influenza patients and many other conditions that require hospitalization. A substantial portion of the advanced illness population is excluded from HCAHPS: Patients who die in the hospital Patients discharged to hospice care Patients discharged to nursing homes and skilled nursing facilities Proxy responses are not permitted for this survey the patient must be able to answer for themselves Patients comparing Hospitals In March 2008, 2,421 hospitals publicly reported HCAHPS scores based on 1.1 million completed surveys; in April 2015, 4,167 hospitals publicly reported HCAHPS scores based on more than 3.1 million completed surveys. On average, more than 8,400 patients complete the HCAHPS every day. Hospital http://www.hcahpsonline.org/files/hcahps_fact_sheet_june_2015.pdf

4 Health and Retirement Study (HRS) Name of database Who owns the database? Who publishes the database? Who funds the database? What type of data is used? What patient population is reflected in the database? Who is the database intended for? What part of the database is publicly available? HRS University of Michigan University of Michigan National Institute on Aging and the Social Security Administration In-depth survey interviews Longitudinal Older Adults, over age 50 Researchers First year data was published 1992 Latest year data was published 2016 How frequently is data updated bi-annually all sample size/number of transactions Geographic coverage More details sample size varies per question - from 30 responses to 1300 responses National https://hrs.isr.umich.edu/sites/default/files/biblio/responserates_2017.pdf

5 Name of database Who owns the database? Who publishes the database? Who funds the database? National Healthcare Quality Report Agency for Healthcare Research and Quality (AHRQ) Agency for Healthcare Research and Quality (AHRQ) Agency for Healthcare Research and Quality (AHRQ) National Healthcare Quality Report What type of data is used? What patient population is reflected in the database? Who is the database intended for? What part of the database is publicly available? s Nationally representative sample of Medicare beneficiaries ages 65 and older Researchers First year data was published Varies per measure; between 2005-2010 Latest year data was published Varies per measure; between 2013-2016 How frequently is data updated annually sample size/number of transactions Geographic coverage More details all The Medicare enrollment database served as the sampling frame. A Round 1 sample size of 8,500 respondents was targeted. State https://www.nhats.org/scripts/sampling/nhats_round_5_sample_design.pdf

6 National Health and Aging Trends Study (NHATS) Name of database Who owns the database? Who publishes the database? Who funds the database? What type of data is used? What patient population is reflected in the database? Who is the database intended for? What part of the database is publicly available? NHATS First year data was published 2011 Latest year data was published 2015 How frequently is data updated The Johns Hopkins University Bloomberg School of Public Health The Johns Hopkins University Bloomberg School of Public Health, with data collection by Westat sponsored by the Division of Behavioral and Social Research (BSR), a division of the National Institute on Aging (NIA) Annual, in-person interviews Longitudinal Nationally representative sample of Medicare beneficiaries ages 65 and older Researchers data is publicly available for analysis; data is available in SAS and STATA formats; Claims-linked data is only available to a small number of approved academic and research institutions (Johns Hopkins, RTI, Brown) annually sample size/number of transactions Geographic coverage More details Sample Size: 8000, Medicare claims-linked about 5,500; However, only 200+ decedent's caregivers are interviewed within a last month of life interview focuses on quality of end of life care annually. National https://www.nhats.org/scripts/sampling/nhats_round_5_sample_design.pdf

7 America s Care of Serious Illness: 2015 State-by- State Report Card on Access to Palliative Care in Our Nation s Hospitals Name of database Who owns the database? Who publishes the database? Who funds the database? What type of data is used? What patient population is reflected in the database? Who is the database intended for? What part of the database is publicly available? First year data was published 2008 Latest year data was published 2015 America s Care of Serious Illness: 2015 State-by-State Report Card on Access to Palliative Care in Our Nation s Hospitals Center to Advance Palliative Care (CAPC) Collaboration between the Center to Advance Palliative Care (CAPC) and the National Palliative Care Research Center (NPCRC) Cambia Health Foundation American Hospital Association (AHA) Annual of Hospitals Database, supplemented with data from the National Palliative Care Registry All hospitals identified by AHA as having palliative care programs Researchers All is available; however, analyses were limited to nongovernmental, general medical and surgical, cancer and heart hospitals within the fifty states. How frequently is data updated 2008, 2011, 2015 Where analyses are limited to hospitals with fifty or more beds, the final sample included a total of 2,393 hospitals. Of these, 2,330 completed the AHA survey; this number includes 840 hospitals that participated in the sample size/number of transactions National Palliative Care Registry. An additional 63 hospitals that participated in the Registry but had not submitted data to AHA, were also included. Geographic coverage Census Region More details https://reportcard.capc.org/frequently-asked-questions/

8 Name of database Who owns the database? Who publishes the database? Who funds the database? Underlying Cause of Death Mortality Statistics Branch, Division of Vital Statistics, National Center for Health Statistics (NCHS), Centers for Disease Control and Prevention (CDC), United States Department of Health and Human Services (US DHHS) Underlying Cause of Death, CDC What type of data is used? What patient population is reflected in the database? Data are based on death certificates for U.S. residents All Americans Who is the database intended for? Researchers What part of the database is publicly available? all First year data was published 1999 Latest year data was published 2015 How frequently is data updated sample size/number of transactions Geographic coverage More details annually All Americans County https://wonder.cdc.gov/wonder/help/ucd.html#

Candidate Measures for the ACT Index

Candidate Care Measures for the ACT Index Goal: All people with advanced illness have their physical, emotional or spiritual symptoms assessed and addressed in relation to their goals and values.

HOSPITAL DAYS PER DECEDENT DURING THE LAST TWO YEARS OF LIFE 11 Down Dartmouth Atlas Compound Annual Growth Rate -2.5% Acute Care 20 15 10 5 0 Hospital Service Area Care Transactional Hospital readmissions Hospital admissions Positive all Medicare beneficiaries who died between the ages of 66 and 99

12 INTENSIVE CARE DAYS PER DECEDENT DURING THE LAST TWO YEARS OF LIFE Down Dartmouth Atlas Compound Annual Growth Rate 0.0% Acute Care Hospital Service Area Care Transactional ICU days Neutral 5 4 3 2 1 0 all Medicare beneficiaries who died between the ages of 66 and 99

POTENTIALLY AVOIDABLE HOSPITALIZATIONS FOR CHRONIC CONDITIONS, EXCLUDING COPD, PER 100,000 POPULATION, AGE 18 AND OVER 13 Down AHRQ Compound Annual Growth Rate -2.3% Acute Care State Care Hospital readmissions Hospital admissions Positive 2,000 1,500 1,000 500 0 Nationally representative sample of Medicare beneficiaries ages 65+

14 PERCENT OF HOSPITAL PATIENTS IN MEDICAL COHORT READMITTED WITHIN 30 DAYS OF DISCHARGE Down Dartmouth Atlas Compound Annual Growth Rate -1.5% Acute Care Hospital Service Area Care Transactional Hospital readmissions Hospital admissions Positive 20% 15% 10% 5% 0% all Medicare beneficiaries who died between the ages of 66 and 99

15 PERCENT OF DEATHS OCCURRING AT HOME (NHATS) NHATS Compound Annual Growth Rate -2.1% Deaths at Home National Care Negative 40% 30% 20% 10% 0% Nationally representative sample of Medicare beneficiaries ages 65+

16 PERCENT OF DEATHS OCCURRING AT HOME (CDC) CDC Compound Annual Growth Rate 1.9% Deaths at Home County Care Transactional Positive 80% 60% 40% 20% 0% Data are based on death certificates for U.S. residents

17 HOSPICE DAYS PER DECEDENT DURING THE LAST SIX MONTHS OF LIFE Dartmouth Atlas Compound Annual Growth Rate 5.9% Hospice Hospital Service Area Care Transactional Hospice LOS Positive 25 20 15 10 5 0 all Medicare beneficiaries who died between the ages of 66 and 99

18 PERCENT ENROLLED IN HOSPICE DURING THE LAST SIX MONTHS OF LIFE Dartmouth Atlas Compound Annual Growth Rate 4.8% Hospice Hospital Service Area Care Transactional Hospice LOS Hospice LOS Positive 60% 40% 20% 0% all Medicare beneficiaries who died between the ages of 66 and 99

PERCENT OF DECEDENTS WHO RECEIVED HOSPICE CARE 19 NHATS Compound Annual Growth Rate 4.9% Hospice National Care Hospice LOS Positive 60% 40% 20% 0% Nationally representative sample of Medicare beneficiaries ages 65+

20 PERCENT OF DECEDENTS WHO RECEIVED THE RIGHT AMOUNT OF HELP IN DEALING WITH ANXIETY OR SADNESS NHATS Compound Annual Growth Rate -2.6% Anxiety or Sadness Control National Care Symptom Control Negative 90% 85% 80% 75% 70% Nationally representative sample of Medicare beneficiaries ages 65+

HOSPICE PATIENTS WHO RECEIVED THE RIGHT AMOUNT OF HELP FOR FEELINGS OF ANXIETY OR SADNESS 21 AHRQ Compound Annual Growth Rate 0.1% Anxiety or Sadness Control State Care Symptom Control Positive 95% 90% 85% 80% Nationally representative sample of Medicare beneficiaries ages 65+

22 PERCENT OF DECEDENTS WHO RECEIVED THE RIGHT AMOUNT OF HELP IN DEALING WITH PAIN NHATS Compound Annual Growth Rate -0.8% Pain Control National Care Symptom control Negative 100% 50% Nationally representative sample of Medicare beneficiaries ages 65+

23 PERCENT OF ALL PATIENTS DURING HOSPITAL STAY WHOSE PAIN WAS ALWAYS WELL CONTROLLED HCAHPS Compound Annual Growth Rate 0.6% Pain Control Hospital Care Pain control within 48 hours Symptom control Positive 80% 60% 40% 20% 0% Random sample of adult patients discharged from the hospital; on average, more than 8,400 patients complete the HCAHPS every day.

24 PERCENT OF DECEDENTS WHO RECEIVED THE RIGHT AMOUNT OF HELP IN DEALING WITH BREATHING NHATS Compound Annual Growth Rate 0.4% Other Symptom Control 100% 90% 80% 70% 60% National Care Symptom control Positive Nationally representative sample of Medicare beneficiaries ages 65+

PERCENT OF RESPONDENTS WHO OVERALL WOULD RATE THE DECEDENT'S CARE IN THE LAST MONTH OF LIFE AS EXCELLENT 25 NHATS Compound Annual Growth Rate -3.2% Patient Experience: End-of-Life National Care Negative 60% 55% 50% 45% 40% Nationally representative sample of Medicare beneficiaries ages 65+

PERCENT OF ALL PATIENTS WHO RATED THE HOSPITAL AS A 9 OR 10 ON A 10-POINT SCALE 26 HCAHPS Compound Annual Growth Rate 1.5% Patient Experience: Acute Care Hospital Care Rating of Provider Rating of Provider Positive 80% 70% 60% 50% Random sample of adult patients discharged from the hospital; on average, more than 8,400 patients complete the HCAHPS every day.

PERCENT OF ALL PATIENTS WHO WOULD DEFINITELY RECOMMEND THE HOSPITAL TO YOUR FRIENDS AND FAMILY 27 HCAHPS Compound Annual Growth Rate 0.7% Patient Experience: Acute Care 80% 70% 60% 50% Hospital Care Likelihood to Recommend Likelihood to Recommend Positive Random sample of adult patients discharged from the hospital; on average, more than 8,400 patients complete the HCAHPS every day.

DURING THE LAST MONTH OF LIFE, PERCENT OF DECEDENTS WHO WERE ALWAYS TREATED WITH RESPECT BY HEALTH PROFESSIONALS WHO WERE TAKING CARE OF THEM 28 NHATS Patient Experience: End-of-Life Compound Annual Growth Rate -0.1% National Care Treated with Respect 100% 90% 80% 70% Treated with Respect Negative Nationally representative sample of Medicare beneficiaries ages 65+

DURING THE LAST MONTH OF LIFE, PERCENT OF DECEDENTS WHOSE PERSONAL CARE NEEDS WERE ALWAYS TAKEN CARE OF AS WELL AS THEY SHOULD HAVE BEEN 29 Patient Experience: Advanced Illness NHATS Compound Annual Growth Rate -1.2% National Care Negative 90% 70% 50% Nationally representative sample of Medicare beneficiaries ages 65+

BETWEEN THE LAST INTERVIEW AND THE TIME OF THE DECEDENT'S DEATH, PERCENT OF DECEDENTS WHO DID THEIR FAVORITE ACTIVITY 30 NHATS Patient Experience: Advanced Illness Compound Annual Growth Rate -0.4% National Care Negative 100% 90% 80% 70% Nationally representative sample of Medicare beneficiaries ages 65+

DURING THE LAST MONTH OF LIFE, PERCENT OF DECEDENTS FOR WHOM IT WAS ALWAYS CLEAR WHICH DOCTOR WAS IN CHARGE OF THEIR CARE 31 NHATS Compound Annual Growth Rate -0.2% EOL Decisions 90% 85% 80% 75% 70% National Care Communication Communication Negative Nationally representative sample of Medicare beneficiaries ages 65+

DURING THE LAST MONTH OF LIFE, PERCENT OF DECEDENTS FOR WHOM DECISIONS WERE MADE ABOUT THEIR CARE OR TREATMENT THAT THEY WOULD NOT HAVE WANTED 32 Down NHATS Compound Annual Growth Rate 1.4% EOL Decisions National Care Negative 15% 10% 5% 0% Nationally representative sample of Medicare beneficiaries ages 65+

PERCENT OF DECEDENTS FOR WHOM DECISIONS HAD TO BE MADE ABOUT THEIR CARE AND TREATMENT OF DURING THE FINAL DAYS OF THEIR LIFE 33 HRS Compound Annual Growth Rate 1.3% EOL Decisions Region Care Advanced care plan/surrogate Advanced care planning Positive 60% 40% 20% 0% Older Adults, over age 50

Candidate Communications Measures for the ACT Index Goal: People with advanced illness have care plans consonant with their goals and values and are honored.

PERCENT OF DECEDENTS WHO PROVIDED WRITTEN INSTRUCTIONS ABOUT THE TREATMENT OR CARE THEY WANTED TO RECEIVE DURING THE FINAL DAYS OF THEIR LIFE 35 HRS Advanced Directives or Equivalents Compound Annual Growth Rate 3.0% Region Communications Advanced care planning Advanced care plan/surrogate Positive 60% 40% 20% 0% Older Adults, over age 50

PERCENT OF DECEDENTS WHO DISCUSSED WITH CAREGIVER THE TREATMENT OR CARE THEY WANTED TO RECEIVE IN THE FINAL DAYS OF THEIR LIFE 36 HRS Advanced Directives or Equivalents Compound Annual Growth Rate 1.7% Region Communications Advanced care plan/surrogate Advanced care planning Positive 0.8 0.6 0.4 0.2 0 Older Adults, over age 50

PERCENT OF DECEDENTS WHO MADE LEGAL ARRANGEMENTS FOR A SPECIFIC PERSON OR PERSONS TO MAKE DECISIONS ABOUT THEIR CARE OR MEDICAL TREATMENT IF THEY COULD NOT MAKE THOSE DECISIONS THEMSELVES. THIS IS SOMETIMES CALLED A DURABLE POWER OF ATTORNEY FOR HEALTH CARE. Compound Annual Growth Rate 3.5% HRS 37 Advanced Directives or Equivalents Region Communications Advanced care plan/surrogate Treatment consistent with preferences Positive 80% 60% 40% 20% 0% Older Adults, over age 50

PERCENT OF DECEDENTS WHO WERE ABLE TO PARTICIPATE IN DECISIONS ABOUT THEIR MEDICAL CARE DURING THE FINAL DAYS OF THEIR LIFE 38 HRS Advanced Directives or Equivalents Compound Annual Growth Rate 1.3% Region Communications Advanced care plan/surrogate Advanced care planning 60% 40% 20% 0% Positive Older Adults, over age 50

PERCENT OF DECEDENTS FOR WHOM A DOCTOR(S) RECOMMENDED ANY CARE OR TREATMENT THAT THE FAMILY OR OTHER DECISION-MAKER(S) ULTIMATELY REFUSED Down 39 HRS Advanced Directives or Equivalents Compound Annual Growth Rate -2.8% Region Communications Advanced care plan/surrogate Treatment consistent with preferences Positive 20% 15% 10% 5% 0% Older Adults, over age 50

40 PERCENT OF DECEDENTS WHO RECEIVED CARE OR TREATMENT THAT THE FAMILY OR OTHER DECISION- MAKER(S) HAD ULTIMATELY REFUSED Down HRS Advanced Directives or Equivalents Compound Annual Growth Rate 4.6% Region Communications Advanced care plan/surrogate Treatment consistent with preferences 30% 20% 10% 0% Negative Older Adults, over age 50

41 HOSPICE PATIENTS WHO RECEIVED CARE CONSISTENT WITH THEIR STATED END-OF-LIFE WISHES AHRQ Advanced Directives or Equivalents Compound Annual Growth Rate 0.1% State Communication Treatment consistent with preferences 100% 50% 0% Positive Nationally representative sample of Medicare beneficiaries ages 65+

PERCENT OF DECEDENTS FOR WHOM THE PHYSICIAN OR ANY OTHER HEALTH CARE WORKER HAD PROBLEMS FOLLOWING THE WRITTEN INSTRUCTIONS Down 42 HRS Advanced Directives or Equivalents Compound Annual Growth Rate -2.2% Region Communications Advanced care plan/surrogate Treatment consistent with preferences Positive 60% 40% 20% 0% Older Adults, over age 50

DURING THE LAST MONTH OF LIFE, PERCENT OF DECEDENTS WHO HAD A DECISION MADE ABOUT THEIR CARE OR TREATMENT WITHOUT ENOUGH INPUT FROM DECEDENT OR FAMILY Down 43 NHATS Advanced Directives or Equivalents Compound Annual Growth Rate -2.2% National Communications CAHPS-Provider listened carefully to patient Treatment consistent with preferences Positive 10% 5% 0% Nationally representative sample of Medicare beneficiaries ages 65+

DURING THE LAST MONTH OF LIFE, PERCENT OF DECEDENTS WHOSE DOCTORS, NURSES, OR OTHER HEALTH PROFESSIONAL TALKED WITH THEM ABOUT THEIR RELIGIOUS BELIEFS 44 NHATS Compound Annual Growth Rate -2.2% Spiritual National Communications Negative 60% 40% 20% 0% Nationally representative sample of Medicare beneficiaries ages 65+

DURING THE LAST MONTH OF LIFE, PERCENT OF DECEDENTS WHO HAD AS MUCH CONTACT OF THIS KIND (RELIGIOUS BELIEF) AS THEY WANTED 45 NHATS Compound Annual Growth Rate -0.6% Spiritual National Communications Negative 100% 95% 90% 85% 80% Nationally representative sample of Medicare beneficiaries ages 65+

Candidate Caregiving Measures for the ACT Index Goal: Family or other loved ones, as designated by the person with advanced illness, are recognized and included within the unit of care and as key members of the care team. All dimensions of their experience are assessed and addressed, as desired.

47 FAMILY CAREGIVERS WHO DID NOT WANT MORE INFORMATION ABOUT WHAT TO EXPECT WHILE THE PATIENT WAS DYING AHRQ Compound Annual Growth Rate 0.1% Caregiving State Caregiving Positive 86% 84% 82% 80% Nationally representative sample of Medicare beneficiaries ages 65+

DURING THE LAST MONTH OF LIFE, PERCENT OF CAREGIVERS WHO WERE ALWAYS KEPT INFORMED ABOUT THE DECEDENT'S CONDITION 48 NHATS Compound Annual Growth Rate -1.4% Caregiving National Caregiving Communications Negative 90% 80% 70% 60% Nationally representative sample of Medicare beneficiaries ages 65+

49 HOSPICE PATIENT CAREGIVERS WHO PERCEIVED PATIENT WAS REFERRED TO HOSPICE AT THE RIGHT TIME AHRQ Compound Annual Growth Rate 0.3% Caregiving 95% 90% 85% 80% State Caregiving Positive Nationally representative sample of Medicare beneficiaries ages 65+

Candidate Community Measures for the ACT Index Goal: All people with advanced illness have their social determinants of health assessed and addressed consistent with the person s goals and values.

51 PERCENT OF DECEDENTS WHO USED COMMUNITY SERVICES HRS Compound Annual Growth Rate 7.2% Community Region Community Positive 100% 80% 60% 40% 20% 0% Older Adults, over age 50

HOME HEALTH AGENCY VISITS PER DECEDENT DURING THE LAST TWO YEARS OF LIFE 52 Dartmouth Atlas Compound Annual Growth Rate 3.2% Community Hospital Service Area Community Transactional Positive 30 20 10 0 all Medicare beneficiaries who died between the ages of 66 and 99

53 PERCENT OF HOSPITALS WITH A PALLIATIVE CARE PROGRAM CAPC Compound Annual Growth Rate 3.4% Community Census Region Community Transactional Positive 70% 65% 60% 55% 50% All hospitals identified by AHA as having palliative care programs

Candidate Cost Measures for the ACT Index Goal: People with advanced illness and their family will receive the most cost-effective care in alignment with their goals and values.

55 AVERAGE CO-PAYMENTS PER DECEDENT DURING THE LAST TWO YEARS OF LIFE Down Dartmouth Atlas Compound Annual Growth Rate 3.3% Cost Hospital Service Area Cost Transactional Negative $6,000 $4,000 $2,000 $0 all Medicare beneficiaries who died between the ages of 66 and 99

56 MEAN OUT-OF-POCKET FOR MAJOR MEDICAL COSTS DURING THE LAST TWO YEARS OF LIFE Down HRS Compound Annual Growth Rate 1.9% Cost Region Cost Negative $8,000 $6,000 $4,000 $2,000 $0 Older Adults, over age 50

TOTAL MEDICARE SPENDING PER DECEDENT DURING THE LAST TWO YEARS OF LIFE 57 Down Dartmouth Atlas Compound Annual Growth Rate 3.6% Cost Hospital Service Area Cost Transactional Negative $80,000 $60,000 $40,000 $20,000 $0 all Medicare beneficiaries who died between the ages of 66 and 99