Distinguished members of the National Committee on Vital and Health Statistics and guests. Thank you for allowing me to participate and share my views from a providers prospective on the collection of demographic data (race/ethnic). My views will be from both institutional and medical practice prospective.
My name is Paul Cheng, Jr., and I am the Chief Financial Officer for the Union Health Center (UHC), New York, New York. UHC is free standing, not-for-profit, Article 28 Diagnostic and Treatment Facility licensed by the State of New York. What makes UHC so unique is that it is the health care arm for UNITE!, the Union of Needletrades, Industrial and Textile Employees. UNITE! is the result of the national merger of the Unions of the International Ladies Garment Workers (ILGWU) and the Needletrade and Textile Unions. UHC was established in 1914 by the ILGWU and was the first Article 28
Facility in New York. It was to provide healthcare services to garment workers in sweatshops who were exposed to the rampant TB epidemic at the time. The garment workers at the time and it is still true today is composed of a vastly diverse and largely immigrant population.
In order to properly serve and meet the healthcare needs of the union membership, a large database must be established and maintained. This database at UHC is composed of standard demographic, insurance and medical data of its population. Because of the cultural diversity of the patient base, it was decided several years ago to begin collection of race/ethnic information. UHC understood that many healthcare problems stem from the unique cultural backgrounds of the union members, which could be worsened by the repetitive duties of garment workers.
The inclusion of race/ethnic data required changes in workflow, data collection, programming and sensitivity training of the staff. Our current database shows the race/ethnic patient population to be composed of: 10% Black, 45% Hispanic, 24% Asian, 12% White, 2% Other, 7% Unknown. This is further broken down by sex and age and diagnosis categories and requires constant updating and maintenance. This data is essential for UHC in the treatment and planning for the healthcare needs of our population. Immigrant healthcare problems are vastly different than those of the non-immigrant population. This information also assists the Union Benefit Fund in their planning for healthcare expenditures for the union membership. It is my understanding that the Union currently does not collect race/ethnic information since the ERISA regulations do not mandate the collection of this data.
Though UHC consciously made the decision to collect race/ethnic data, it was not without controversy. To this date it is still very controversial, especially the reliability of the race/ethnic data. The information is gathered voluntarily from the patient, or by observation of the registrar, or by medical notes of the provider or by association of the patients name with any combination of the above. Most difficult are the children of inter-racial marriages, where do you classify if the parents don’t agree or don’t know or don’t care. Not to underscore the importance of this issue, politically, this issue is difficult to deal with.
As to costs, UHC incurred thousands of dollars in reprogramming its computer system with its software vendor. UHC’s electronic medical record system was not written to collect this type of data. Workflows now had to be changed to accommodate the collection of race/ethnic data, which now required retraining at an additional cost. Cultural sensitivity training of the staff added even more costs.
The Operational Policy Letter #93 from the Department of Health and Human Services, Health Care Financing Administration, dated May 3, 1999 provides for Medicare +Choice Organizations in the collection of race/ethnic data. The five categories of race (American Indian or Alaska Native, Asian, Black or African American, Native Hawaiian or Other Pacific Islander and White) and two categories of ethnicity (Hispanic or Latino and Not Hispanic or Latino) if utilized by all healthcare organizations will require much reprogramming of their systems. Besides, what if the provider is unable to determine the race/ethnic status of the patient or what if the patient refuses to respond. There is no category for unknown. The additional direct and indirect costs could be enormous if providers as a whole are required to collect this data. We all know that the most expensive provider in incurring costs due to change are the institutions (hospitals).
It is my personal opinion that the “Business Case” to be made for the collection of this data is strong. I personally do not have a problem with it. What I do have a problem with is the notion of inclusion of this data in the billing/claims transmission records. Providers who transmit claims currently or who plan to do so in the near future are leery of the idea. Why give a payor another excuse to reject the claim if the race/ethnic data is not included with the transmission. What is to prevent a payor from requiring the race/ethnic data as part of the data set to process the providers claim. And what assurances do we have that this data will not be misused (i.e.: red-lining)?
In addition, to a provider, race/ethnic is not a service delivery issue. It is a public health issue and should remain in that domain. The delivery and quality of health care services are the prime concern of providers, not public health issues as it relates to race/ethnic. A provider may for its own purposes attempt to collect this data as in the case of UHC.
For public health purposes the collection and use of race/ethnic data should be clearly stated. The mechanism and the point of collection must be uniform and consistent safeguards must be in place to prevent misuse of this sensitive data.
My thanks to the committee for allowing me to participate at this forum. If I may be of further assistance, please feel free to contact me.