Collection of Race, Ethnicity and Language by Health Plans in Massachusetts:
D-r-a-f-t Expert Panel Recommendations for HCQCC 
Disparities Council Meeting
February 23, 2009

HCQCC charge to health plans: 
From HCQCC meeting on July 16, 2008:
(1)	The Maine Health Information Center (MHIC) will not reject health insurance carriers’ data submissions because they are missing patient race and ethnicity data, until July 1, 2009.  The Council will publish completeness thresholds for these data elements before that date.  In the meantime, health insurance carriers may continue to report patient race and ethnicity to the Council via the MHIC on a voluntary basis, in accordance with the data submission standards set forth in the Council’s data collection regulation 129 CMR 2.00.
(2)	At this time, health insurance carriers may not report to the Council via the MHIC patient race and ethnicity data that was estimated using geo/surname coding or any other estimation methodology.  Health insurance carriers should only report patient race and ethnicity that was reported by the patient or the patient’s representative.

HCQCC Relationship with Brookings
•	HCQCC is  working with the Brookings Institute, Engelberg Center High Value Health Care Project, to provide technical assistance to health plans in the Commonwealth of Massachusetts to collect race/ethnicity data per regulations promulgated in 129 CMR 2.00. 
•	Brookings’ Deliverables
•	Assessment of health plans’ current status and plans for collecting (and reporting) data.
•	Assessment of patient/enrollee population preferences for data collection and reporting.
•	Convene a panel of experts on racial/ethnic data collection in health plans.

Charge to the expert panel
•	Recommendations on R/E/L categories and fields
•	Recommendations on thresholds
•	Best practice (standards) for collecting R/E/L
•	Develop recommendations for integrating data from hospitals to health plans
•	Options for using indirectly estimated data on disparities as an interim strategy for directly collecting data.

QCC Expert Panel on Race/Ethnicity Data Reporting
Members: 
Joel Weissman, PhD (EOHHS) - Chair
Keith Bell (NHP) 
Bruce Cohen, PhD (DPH)
Kathy Coltin (Harvard Pilgrim) 
Tom Sequist, MD (Harvard University)
Georgia Simpson-May (OHE)
Lauren Smith (EOHHS) 
Consultants:
Robin Weinick, Phd (MGH-Consultant)
Katharine London (Consultant)
David Nerenz, Phd (HFHS-Consultant)
Facilitators:
Engelberg Center, Brookings Institute
Kalahn Taylor-clark

Goal: To develop consensus-based standards for race/ethnicity (and language) categories, reporting thresholds, and methods/modes for data collection.

Brookings Deliverable: Working paper with recommendations for HCQCC to promulgate mandate.

Summary of DRAFT Recommendations
Recommendations for regulatory change:
1. Requirement to use self-reported data for R/E
2. Thresholds for R/E
3. Requirement to collect language
•	Direct collection and thresholds for language
Recommendations on guidelines for best practices of data collection: 
4. Guidelines for collecting Race
5. Guidelines for collecting Ethnicity
6. Guidelines for collecting Language
Recommendations for Interim data collection:
7. Interim use of Indirect data collection 

DRAFT Recommendation 1
Health plans must acquire self-reported race/ethnicity data on members directly from the member or from 3rd party sources (e.g., providers, employers), and should provide the data from the best source to QCC. 
•	Health plans may acquire R/E/L from third-party sources (e.g., employers, providers, state, etc.) provided that these sources obtained data directly from members or caregivers.  
•	Health plans acquiring data from multiple sources should report only data from the best source to QCC.
•	Plans should develop a ‘trumping logic’ to choose the best quality source for reporting data to QCC.
•	Health plans should account for the source of the data in their database.

DRAFT Recommendation 2
The QCC should establish thresholds for reporting race and ethnicity, and these thresholds should increase over time.
•	The threshold for reporting race and/or ethnicity should be 5% of membership (eligibility files) by July 1, 2010, and should increase by some incremental amount per year thereafter (To be determined by QCC).  
•	Health plans can meet the threshold by reporting race, ethnicity, or Hispanic indicator. 
•	The threshold for reporting language should be 5% of membership by July 1, 2011, and should increase incrementally per year thereafter.
•	Health plans may apply for a waiver or extension.   

DRAFT Recommendation 3
The QCC should amend its regulation to add patient language.
•	The threshold for reporting language should be 5% of membership by July 1, 2011, and should increase incrementally per year thereafter.
•	Health plans may apply for a waiver or extension.   

DRAFT Recommendation 4
Health plans should report using DHCFP categories, but should collect “Race” and “Hispanic Ethnicity” identifiers using the following categories, which is what the member sees and chooses from, checking all that apply: 
•	American Indian/Alaska Native
•	Asian
•	Black
•	Hispanic/Latino/Black
•	Hispanic/Latino/White
•	Hispanic/Latino/Other
•	Native Hawaiian or Other Pacific Islander
•	White
•	Other Race
•	Declined
•	Health plans will be instructed (and will be provided standard language) to explain their reason for collecting this information from members, including how these data will and will not be used.
•	…allow members to ‘check all that apply’.
•	Health plans may code patient race using one field or multiple fields. 
•	e.g., Health plans with only a single race field may use single field codes that capture multiple categories, (e.g., B1=Black and American Indian/Alaska Native, B2=Black and Asian).  
•	“Declined” if member actively chooses not to answer; the plan should not re-ask the question. 
•	“Unavailable/not specified” used if member does not select any categories. In this case, health plan may not count the response as having information on the member, and is directed to re-ask the question of the member. 

DRAFT Recommendation 5
Health plans should collect “ethnicity” using the DHCFP categories
•	Health plans should ask patients for their ethnicity in an open ended way, for example:  “What is your ethnicity (for example, Irish or Haitian)?”, or “Where is your family from originally? (for example, Ireland or Haiti)?”
•	If a health plan wishes to collect more (or differing) ethnicity categories than those defined by DHCFP, they are directed to roll-up ‘sub-ethnic’ categories according to designation in superset for reporting to State.
Rolling up sub-ethnicities
For example, the Asian Indian ethnicity chooses from a Bangladeshi, Bhutanese, Burmese, Pakistani, or Sri Lankan sub-ethnicity. 

DRAFT Recommendation 6
Health plans should strive to use standard methods to collect language information from members.
•	Ideally, health plan is instructed to ask the member, “In what language do you prefer to get information about your health care?”  However, language information will be accepted using variable methods of collection. 
•	Health plans may choose to collect, code, and report to the QCC additional languages other than those required.

Identifying language categories is challenging…
•	The top ten spoken languages in Massachusetts by census are Spanish, Portuguese, French, Italian, Chinese, French Creole, Russian, Vietnamese, Greek, and Polish.
•	The top ten most frequently encountered languages by Massachusetts Acute Care Hospitals are Spanish, Portuguese, Russian, Chinese, Haitian Creole, Cape Verdean, Vietnamese, Arabic, American Sign Language, and Albanian.
•	The top ten languages FLNE are Spanish, Portuguese, Chinese, Haitian Creole, Vietnamese, Khmer, Cape Verdean, Russian, Arabic, and Korean. 

DRAFT Recommendation 7
QCC should consider providing health plans with indirect estimation software, based on most up-to-date methodologies, in order to augment directly collected data and to assess racial/ethnic disparities at the State level.
What is indirect estimation?
•	Indirect Estimation methodologies use an individual's name and address to estimate the probability that the person is white, the probability that the person is black, Hispanic, Asian, and so on.  Researchers can use these probabilities to estimate the racial make-up of population, and the quality of care received by different minority groups.  
•	For example, the QCC (or any health plan) could use this method to estimate the percentage of Blacks that received a mammogram versus the percentage of whites that received a mammogram.  
Indirect estimation…
Specific recommendations
•	The QCC should add indirect estimation software to the “black box” software that its data collector provides to each health plan site.  The QCC would receive this information from health plans together with encrypted patient identifiers.  
•	The QCC should use indirect estimates to supplement directly reported data until health plans are able to report directly collected data for a majority of their patients.
•	Each participating plan should receive back indirectly estimated data on their own population from QCC.  

Common Perceptions/Questions about Indirect Estimation
•	We already tried indirect measures and they were too unreliable to be of much use.
•	New methods are superior.
•	This method is inaccurate because it would misclassify me.
•	Indirect measures do NOT classify individuals as a single race or ethnicity.
•	Given that self-reported race/ethnicity is the gold standard, why divert time and resources to settle for imprecise and unreliable measures? 
•	Direct measurement will take time; this is an interim measure.
•	We don’t understand how to use probabilities that a member belongs to one racial/ethnic group or another. 
•	Aggregation can be done with knowledge of high school algebra and simple probability.
•	How can indirect estimates be used?  When is it appropriate and inappropriate to use indirect estimates? 
•	To identify populations and groups that have disparate quality of care.  

Comparing Population Estimates Using Self-Report vs. RAND method in health plan of 2 million
•	Self-Reports are 8.9 for Hispanic; 5.0 for Asian; 8.0 for Black; and 78.1 for White/Other
•	The RAND method is 10.0 for Hispanic; 4.5 for Asian; 9.1 for Black; and 76.4 for White/Other

Comparing Disparities from Self-Report vs. RAND method in a health plan of 2 million
•	In approximately 30,000 diabetics amongst White versus Black:
•	The Direct method is 22.7 for B-Blocker; 14.5 for HgbA1c; 21.6 for Lipids; and 7.6 for Eye Exam.
•	The Indirect method is 23.1 for B-Blocker; 14.5 for HgbA1c; 21.3 for Lipids; and 7.4 for Eye Exam.