My Career in Data Lisa I. Iezzoni, MD, MSc Mongan Institute Health Policy Center Harvard Medical School June 25, 2016
THANK YOU AcademyHealth Disability Research Interest Group Vision of René Jahiel, MD, PhD, and others DRIG has matured and grown steadily since Tenacity, commitment, dedication, grit, persistence, determination, perseverance, stamina, doggedness, steadfastness, resolution, strength of purpose …
MY CHARGE TOPIC: concerns about availability and quality of data about disability for health services research about disability REFRAME: discuss career and my views of how HSR relating to disability has evolved over time TIME FOR DISCUSSION
With apologies to the art of storytelling, shall try to do all three: describe my career (highlights), consider the evolution of disability HSR (highlights), wending threads of data with 3 pauses and questions for disability HSR going forward: 1. Administrative data 2. Survey and in-depth interview data 3. Medical record data
26 years in 3 minutes …
Constructive dismissal
MS can’t be cured, there is nothing medicine can do about it, so never ever talk about it.
#1. ADMINISTRATIVE DATA The earliest – and perhaps most impactful disability research – relates to Social Security’s disability insurance programs and Medicare and Medicaid policy and health care delivery system questions (e.g., costs and quality of care). Administrative data
DISABLED MEDICARE BENEFICIARIES Disproportionately high costs Managing high costs challenging, especially for certain subgroups of disabled Medicare beneficiaries Questions raised about quality of their care, but how should care quality be measured for Medicare beneficiaries with disability?
ADMINISTRATIVE DATA Medicare and Medicaid claims files Administrative definition of disability Original entitlement for Medicare = disability Medicaid eligibility category ICD-9-CM diagnosis and procedure codes Few indicators of functional status, activity or participation limitations (mostly V codes, unreliably and inconsistently coded) Nonetheless, HSRers made concerted efforts to squeeze disability information out of ICD-9-CM codes
MY FIRST JOB Mid-1980s: major changes in Medicare payment policies Implementation of diagnosis related groups (DRGs) for Medicare prospective payment system (PPS) for general acute care hospitals (FY 1984) Medicare published first reports of hospital mortality rates Efforts to move into managed care to control costs Worked for Health Policy Research Consortium on projects specified by the Health Care Financing Administration (HCFA – now CMS)
Risk adjustment: statistical process that accounts for differences in mix of patients; has roles in both payment and quality assessment policy.
HIERARCHICAL CONDITION CATEGORIES HCCs: method Medicare uses to pay managed care organizations Also used as risk adjustment in many HSR studies Started developing with Arlene Ash at BU in July 1984, with other colleagues collaborating through late 1990s Disability entitlement status ICD-9-CM codes HCCs facilitate inclusion of Medicare beneficiaries with disability in standard Medicare managed care and in experimental demonstration programs
ICD-10 Code Structure
Administrative data question for future HSR: Will ICD-10-CM and ICD-10-PCS be any better? No chance of ICF codes any time soon
I cannot honestly say I remember July 26, 1990, or feeling it had anything to do with me. I was working too hard to be productive so I would not be fired because of my disability – classic overcompensation.
Rolling focus group
#2. SURVEY DATA AND DATA FROM IN-DEPTH INTERVIEWS Other early disability HSR investigations relied on data from national surveys – the U.S. Census and many other surveys done to address policy concerns – but to really capture the experiences and perspectives of persons with disability, other HSRers adopted qualitative research methods and interviewed women and men with disability around specific topics (e.g., barriers to care, stigmatization and discrimination)
1880 CENSUS Was, on the day of the enumerator's visit, the person sick or disabled so as to be unable to attend to ordinary business or duties? If so, what was the sickness or disability? Was the person blind? Was the person deaf and dumb? Was the person idiotic? Was the person insane? Was the person maimed, crippled, bedridden, or otherwise disabled? (1870: Is the person deaf and dumb, blind, insane, or idiotic?) (1860: Was the person deaf and dumb, blind, idiotic, pauper, or convict?)
“MODERN” U.S. CENSUS Started asking disability questions in 1970 Used for tracking prevalence of disability and associations with other sociodemographic characteristics Used by federal government the assess need for services Transportation Employment Housing
Common misconceptions about people with disabilities contribute to troubling disparities in the services they receive, especially an "underemphasis on health promotion and disease prevention activities.“ Healthy People 2010
ROUTINE SCREENING Persons with major mobility problems: 70% less likely: asked about contraception (women) 18% less likely: Pap smear* 22% less likely: mammogram* 20% less likely: asked about smoking history (analyzing smokers only) * 2010 rates; virtually unchanged since 1998
PERCEPTIONS OF DISABILITY 1994-1995 NHIS-D self-respondents “Perceives self as NOT having a disability” 58 % of blind, very low vision 73 % of deaf, very hard of hearing 32 % of walker users 20 % of manual wheelchair users 16 % of power wheelchair users
IN-DEPTH INTERVIEWS Isadore Greenfield, late 70s Muscles on one leg excised: cancer (sarcoma) Visited him at his home, which had been adapted Used scooter LI: Tell me about your trouble walking. IG: I don’t have trouble walking; I don’t walk. Rode scooter to shops; used The RIDE to go to theater, symphony, daily adult education program Started feeling disabled when he had trouble pulling up pants
ACA Signing Ceremony, March 23, 2010
SECTION 4302 1. Are you deaf or do you have serious difficulty hearing? 2. Are you blind or do you have serious difficulty seeing, even when wearing glasses? 3. Because of a physical, mental, or emotional condition, do you have serious difficulty concentrating, remembering, or making decisions? (5 years old or older)
SECTION 4302 4. Do you have serious difficulty walking or climbing stairs? (5 years old or older) 5. Do you have difficulty dressing or bathing? (5 years old or older) 6. Because of a physical, mental, or emotional condition, do you have difficulty doing errands alone such as visiting a doctor's office or shopping? (15 years old or older)
Plans afoot to change disability questions and periodicity in the National Health Interview Survey, including Child Core and Adult Core
QUESTIONS What will be disability content of future surveys? What will this mean for cross-sectional and longitudinal studies of disability? What will be future contributions of in- depth interview qualitative research? Will in-depth interview studies be funded and publishable in high-impact journals?
#3. MEDICAL RECORD DATA Fewer disability HSR investigations have relied on medical record data but the use of electronic health records offers an opportunity to use this important data source – but only if credible information about disability is recorded.
FUNCTIONAL STATUS AND RISK OF IMMINENT DEATH FOR INPATIENTS Information recorded in nurses’ notes not physicians’ notes Lung cancer patients: functional status more predictive than APACHE score, cancer stage, comorbidities Whether patient could bathe self more predictive than lab values for pneumonia, congestive heart failure Overall sense of patient well-being
NICHD R21: OBEMR REVIEW MGH: high risk OB center, ≈ 3,400 deliveries/year OBEMR: separate from other MGH EMR, has its own idiosyncratic coding scheme We designed: o Screening tool to identify chronic physical disability Use of mobility aid, substantial hand or arm difficulties o Patient demographic clinical characteristics o Prenatal care quality of care instrument o Labor and delivery quality of care instrument 100 record reviews of sample chosen with problems that often causes disability (e.g., MS, SCI, CP, SB)
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