The Subcommittee on Population-Specific Issues of the National Committee on Vital and Health Statistics was convened on Wednesday, November 5 in the Hubert H. Humphrey Building in Washington, D.C. The meeting was open to the public. Present:
Lisa Iezzoni, M.D., Chair
Hortensia Amaro, Ph.D.
Vincent Mor,
Ph.D.
Elizabeth Ward
Don Detmer, M.D.
Carolyn Rimes, Health Care Financing Administration (HCFA)
Pat
Golden, National Center for Health Statistics (NCHS)
Jason Goldwater, NCHS
Michelle Adler, Office of the Assistant
Secretary for Planning and Evaluation (ASPE)
Date Hitchcock, ASPE
Mike Newman, Health Resources and Services Administration
Harvey
Schwartz, Agency for Health Care Policy and Research
Sue Nonemaker,
HCFA
John Burke, HCFA
Louisa Buatti, Medicare Payment Advisory
Commission
The Subcommittee met for two hours in break-out session. It considered: Census disability questions; the status of a planned meeting on health data in the Islands and Territories; follow-up on OMB Directive 15; plans for the Subcommittee's project on Medicaid managed care; and HCFA's data collection activities on post-acute care.
Ms. Adler briefly reviewed the information she gave the Subcommittee about this topic on September 8. The first Census disability questions, related to work, were in 1970. In 1980 questions were added on public transportation, and 1990 added a proxy for ADLs and for IADLs. Anything on the decennial census must have a basis in statute -- e.g., apportionment or revenue sharing -- and be accepted by the Census Bureau and OMB. A maximum of six disability items were permitted for the 2000 census. The questions must be understandable at about a fourth grade reading level in order to reach most of the population.
The goals of disability advocates were to identify people with disabilities and to include questions on disability and work. It was not satisfied with the questions devised by the Census Bureau, so a working group spent the summer developing other questions. Ms. Adler stressed that they had to combine a lot of material in a few questions. Two versions of disability questions were tested in the census cognitive lab, on 20 people chosen from disability societies such as the
Multiple Sclerosis Society of Washington. Ms. Adler said it was "a very complete test" and they learned a lot from it. She described some of the modifications made as a result of the cognitive testing.
A Subcommittee member questioned whether the word "impairment" would be understood by someone with a fourth or sixth grade reading level, and this theme continued through the group's discussion. Several members indicated concern that the word would not, in fact, be understood and suggested "problem" and "difficulty" as alternatives. The question of how the term would be translated into other languages, such as Spanish, was also noted. Members also discussed various aspects of the content of the questions.
Ms. Adler said the Census Bureau was persuaded to put back the ADL question that it had previously removed because of poor results in a content re-interview test after AHCPR research showed the problems with re-testing ADLs. The final set of questions include five that identify people with disabilities, including cognitive impairment, and one concerning work at a job or business. The questions will yield information on children for the first time. She added that the ADA civil rights legislation has no data requirements, but something "later on" may require information at the local levels in order to assess compliance with the ADA. The dress rehearsal is planned for April 1998. It will test procedures, including sampling, not content. Revision of the content will not be possible afterwards "unless it entirely blows up."
The Subcommittee expressed serious concern about the small number of people on whom the questions were tested and the fact that these people are not representative of those who would not self-identify as members of a disabled group. They reiterated their concerns about the word "impairment" and its Spanish equivalent. Ms. Adler explained that time and resource limitations made it impossible to choose a random sample of people for the cognitive test. She pointed out that learning about how to identify people with disabilities is a gradual process, and there is still much methodological work to be done on disability and health. The Washington Statistical Society is going to do a special case study using the disability questions in February.
Ms. Golden reported on her preliminary work on an agenda and list of presenters for a planned December meeting on data collection in the Pacific Islands and Puerto Rico. Some of the agencies she has contacted want a formal written request from the Subcommittee, but meanwhile potential speakers have tentatively reserved the date. Despite there being no budget to bring people from the Islands, federal and non-federal participants need to be balanced. She noted that the issue of data for the islands and territories is being addressed several places in the Department, including the Hispanic agenda for action initiative, the Asian-Pacific Islander initiative, and SAMHSA efforts. In general, the Pacific islands are better represented than the Caribbean territories in the speaker list.
Dr. Iezzoni noted that Subcommittee members need background in advance of this meeting, in order to optimize use of the meeting time. The goal is to learn about issues in health data in the territories and the role of the federal government in monitoring the health of residents. The intended product is about a 10-page report with recommendations.
The Subcommittee asked Ms. Golden to provide a written status report, including a list of possible speakers, so the progress and gaps can be assessed and a decision made about whether to go forward with the December meeting. Dr. Iezzoni and Ms. Rimes will consult on this in a day or two. The group discussed the possibility of additional staff support and funding from the Office of Minority Health, and agreed that someone should let Dr. Carter-Pokras know of the Subcommittee's needs.
Ms. Golden noted that OMB accepted all but two of the Subcommittee's recommendations. There will be five categories of race, six in the combined race category, plus two ethnic categories. Two HHS committees are now looking at policy and tabulation issues, with NCHS doing much of the work. The question is how to tabulate the data for the multiple races, given that different agencies need it in different forms. Dr. Mor commented that the changes mean more ambiguity for researchers and more complexity for policy makers, but better information from a public health perspective.
Dr. Iezzoni said the Subcommittee needs to decide how it will follow up, with guidance from Dr. Amaro. She suggested spending a couple of hours in a break-out session on this during the full Committee's March or June meeting. Dr. Amaro noted that the Subcommittee had also recommended participating in the groups set up to follow up on health data.
Mr. Goldwater reported on his talks with people in the CDC Office of Managed Care, which has studied managed care programs in relation to Medicaid in several states. The conversations confirmed the Subcommittee's earlier sense that Arizona and Massachusetts are the best states for a site visit. Mr. Goldwater noted that Arizona is the oldest program, and it has several registries and vast experience. Massachusetts has one of the more innovative Medicaid systems. Dr. Iezzoni asked Mr. Goldwater and Ms. Rimes to set up site visits and meetings in those states. Members agreed to meet in January to prepare for the site visit. Mr. Goldwater will prepare background information, an information-gathering protocol, and a list of the types of people the Subcommittee wants to talk to.
The group then discussed the contract and agreed to award it to Sara Rosenbaum, as advised by Mr. Goldwater's CDC sources. Her contract will include these elements:
· identifying best practices in selected states
· compiling state reporting requirements as reflected in managed care contracts
· attending the January hearing, the aim of which is to determine what questions stakeholders want answered about Medicaid managed care
· examining reporting requirements in the light of the questions to be answered; identifying gaps
· advising on the information-gathering protocol
The Subcommittee discussed the types of people it wants to hear from in January, emphasizing "people on the ground" rather than contractors and researchers. Those mentioned included:
· Nelda McCall (studying community health centers in 10 states)
· patient advocacy groups
· people representing Medicaid
· providers
· alliance groups
· representatives of state governors and state legislators
· more than one person representing mental health and substance abuse
· agencies with contracts for mental health and substance abuse services
Ms. Rimes shared a status report written by Sue Nonemaker. She said the Subcommittee's letter of several months ago will be responded to by Mary Vienna, who works on quality at HCFA. Ms. Rimes plans to meet with her first and brief her about NCVHS and this Subcommittee. She reported that "it appears that OASIS will be the system of choice for home health data collection." It will be required, and re-evaluated over time.
Dr. Mor said Tom Hoyer, who is in charge of payment and policy at HCFA, seems to understand the implications of having alternate systems for post-acute care data. Dr. Iezzoni remarked that the aforementioned report does not look like an integrated approach to post acute care. After Ms. Rimes and Dr. Mor described several studies and initiatives, Dr. Iezzoni observed that this list of initiatives itself demonstrates the lack of coordination and administrative simplification. Ms. Rimes said that people are talking about this issue at HCFA, and there is a research component (on which Bob Kane is working) that the Subcommittee should followup on.
The Subcommittee agreed that a letter should be written to the Data Council calling attention to the proliferation of post-acute care data collection efforts at HCFA and the fact that this runs counter to the principles of administrative simplification. Dr. Mor was asked to draft the letter in time for the Executive Subcommittee to review it at its November retreat.
Finally, the group agreed to join other Subcommittees in recommending that the full Committee sponsor a hearing on the unique personal identifier. Dr. Mor commented that a cost benefit analysis may do more to promote consensus than another hearing. It was also noted that public education is needed, to make the case that the public can only reap the full benefits of health data collection if a unique identifier is used. Another participant observed that the public is looking for more protection for its information.
Dr. Iezzoni then adjourned the meeting.
I hereby certify that, to the best of my knowledge, the foregoing summary of minutes is accurate and complete.
/s/ Lisa I. Iezzoni 02/17/98
Lisa I. Iezzoni, M.D., M.S., Chair Date