My Career in Data Lisa I. Iezzoni, MD, MSc Mongan Institute Health - - PowerPoint PPT Presentation

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

• rganizations

 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

• vercompensation.

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

• r 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:

• Screening tool to identify chronic physical disability
• Use of mobility aid, substantial hand or arm

difficulties

• Patient demographic clinical characteristics
• Prenatal care quality of care instrument
• Labor and delivery quality of care instrument

 100 record reviews of sample chosen with problems that

• ften causes disability (e.g., MS, SCI, CP, SB)

OBEMR REVIEWS FAILED

 We could not convince ourselves that we had

found more than 1 or 2 women with CPD

 Problems:

• OBs do not document functional status, mobility aid use
• Had to look at consultant notes, which had variable

formats

• Information conflated multiple delivery admissions
• Codes might apply not to woman herself but to other

family members or to newborn (e.g., CP [cerebral palsy], SB [spina bifida])

• Woman not disabled (common with MS diagnosis)

2015 EHR Standards and Certification Criteria issued by the Office of National Coordinator for Health Information Technology did not require collection of information about disability status.

2015 COMMON CLINICAL DATA SET

 One goal: allow evaluation of health and

health care disparities using EHR data

 Elements required in common clinical data

set

 Age  Sex  Race  Ethnicity  Preferred language

Justification: defining disability is too complicated and there is no consensus about disability data elements. (Over burdened health care practitioners would resist adding disability.)

QUESTIONS

 What will be utility of EHRs in HSR relating to

disability?

 Doctor’s notes?  Notes of other clinicians (nurses, rehabilitation

therapists)

 How can “natural language processing” be used

to identify disability data?

 Can HSR assist in proposing disability data

standards for Common Clinical Data set?

Make a difference – improve the lives of persons with disability!!