Mitchell P. LaPlante, Ph.D.
Disability Statistics Center
Institute for Health &
Aging
University of California
(415) 502-5214 CA 94118
The Health Insurance Portability and Acountability Act (HIPAA) of 1996 calls for standardized electronic filing and transmission of administrative and financial transactions (encounter or claims data) of persons with health providers and transactions among health providers. The law calls for the development and implementation of standards for transmitting health information, but does not dictate the content of the information. However, in developing standards for transmitting data, consideration must be given to content, since the information contained in such transactions should be optimized so that many parties can use it. Furthermore, the size and operations performed on databases created will reflect what is contained in them. Thus, standardization of transmission implies to some extent standardization of content as well.
I wish to comment on certain informational needs pertaining to the fields of health and disability services research that could be considered and highlight some of their administrative and research implications.
I wish to consider the inclusion in this new system of reliable functional and disability information which can provide needed information for health and disability services. Functional status and disability status play two roles. First, they are proven predictors of health care utilization, including both acute and long-term care. Second, they are increasingly used as indicators of the effectiveness or outcomes of services. Any data system should reflect the fact that disability is both a characteristic that can be used to identify need for certain types and levels of services, and can also serve to evaluate the outcomes of services received.
Some of the applications that information on functional/disability status that may interest health plans and providers include:
Research uses of this information are many and critically important. If all transactions are represented in the system and can be linked together, it serves a most important function as a health registry, much as the hospital discharge data system of the Department of Health Services now does in California for hospitalization data. However, the registry function is not completely realized because uninsured populations may not be represented. However, if security and confidentiality can be ensured for those in the system and data can be made available for research purposes, it would generate a massive amount of needed information that would stimulate health and disability services research immensely. Let me highlight some research applications. First, this system may provide needed statistical data for determining the rate of low prevalence chronic diseases and disabling conditions in the population, such as spina bifida, cerebral palsy, and others. Using geographic and other demographic variables, very reliable small-area statistics could be created, helping service providers to understand better the unique needs of local populations in their service areas. I imagine that creative researchers will push the envelope further, and make use of this information to identify risk factors and epidemiological knowledge. Second, comparative data on different covered populations could be obtained. Public insurance systems have a greater proportion of people with disabilities served than private insurance systems, owing to SSDI, SSI, and other public disability programs that provide public insurance coverage. I would stress that a goal for the administrative simplication requirements is that both public and private insurance systems be equally included, and this is necessary to compare across these major populations.
Looking within the private system, this new data system could help answer the question of whether people with disabilities are less represented in capitated versus non-capitated plans, a question that is increasingly relevant as managed care penetration increases, as well as questions about the quantity and quality of services they receive.
Third, longitudinal research is certainly needed and is feasible in this type of system. Desiderata for such a system would be that people may be tracked from provider to provider while also tracking disability and functional status, and changes therein. Some research questions that come to mind are: Can we ascertain different profiles for people discharged from hospital to community settings versus those discharged to institutions? Do they do better in the community and is community care more efficient? Can we track cases from acute hospitalization discharge to rehabilitation and evaluate outcomes for rehabilitation providers? I believe these questions can and will be answered if the administrative simplification requirements ensure that the data needed for research purposes are included.
This last question highlights the need for indentifying rehabilitation services in this system. Rehabilitation services are those services that are provided to improve functioning. Although rehabilitation is a big industry, estimation of the volume and types of medical rehabilitation services is not possible, even for in-patient services, because the information is not available. Rehabilitation may be provided by specialized rehabilitation facilities or by specialied units or providers within more general facilities. Thus, it is extremely critical that rehabilitation as a type of encounter be identified for all encounters that are recorded. It is not sufficient to classify the type of facility or provider as providing rehabilitation or not. For example, a SNF may provide both nonrehabilitative and rehabilitative services. If identification of rehabilitation services are provided, the data could also be used to develop payment schedules for rehabilitation services.
All of this is facilitated in the area of disability because there is an evolving standard of classification that can be employed. Besides the ICD, The World Health Organization provides another classification, called the ICIDH, which is a classification of impairments, disabilities, and handicaps associated with or arising from disease and trauma. This classification is currently being evaluated and is undergoing some revision over the next few years. But it does offer a standard, though an evolving one, and I recommend that at least the impairment and disability domains be included within the core data elements.
Remaining issues involve when to record disability information, how often, and by what methods (self-assessment, clinical, or both). These issues will need to be evaluated carefully, with the goal of getting the right amount of useful information while avoiding unnecessary or excessively costly data collection.
The National Committee on Vital and Health Statistics, in their report "Core Health Data Elements," wisely have reserved place holders for disability and rehabilitation. I commend them for that action and encourage that place holders be established in the implementation of Administrative Simplification Requirements of the Health Insurance Portability and Accountability Act of 1996. As a researcher, I look forward to using the proceeds of this effort.