Opportunities for Engaging Long-Term and Post-Acute Care Providers in Health Information Exchange Activities: Exchanging Interoperable Patient Assessment Information. Creation and Development of the IRF-PAI

12/01/2011

The IRF-PAI was created for use by facilities subject to CMS’s payment system for Medicare inpatient rehabilitation services. The Functional Independence Measure (FIM), on which it is largely based, was developed prior to that, as a standardized way of measuring the progress of patients undergoing medical rehabilitation.

In 1983, the American Congress of Rehabilitation Medicine (ACRM) and the American Academy of Physical Medicine and Rehabilitation (AAPM&R) appointed a national task force of experts in the medical rehabilitation field to develop a uniform medical rehabilitation data system for documenting outcomes and costs of medical rehabilitation.120 The work of the task force was originally funded by the National Association of Rehabilitation Facilities (NARF). In order to facilitate the mission of the task force, ACRM and AAPM&R endorsed applying for a development grant from the National Institute of Handicapped Research of the U.S. Department of Education.121 The grant for developing and field-testing a functional independence measure was applied for and coordinated through the State University of New York at Buffalo. The grant work was supported by 12 national organizations in various rehabilitation specialties who either sponsored, endorsed, or participated in the development of the data system.122

Since the aim was to create a uniform medical rehabilitation data "system," the grant was intended to support both the development of the assessment instrument and the creation of a data management service.

Although the assessment instrument was designed primarily to measure functional status to inform rehabilitative care, it was envisioned that the data system would be useful for purposes beyond clinical care. The project overview read:

The principal uses of such data are expected to be justification for payment of services, accreditation, quality assurance, evaluation of service innovations based on research and development, estimation of cost benefit and cost effectiveness of rehabilitation services, and more uniform and objective education and training of rehabilitation practitioners.123

The task force identified and reviewed both published and unpublished existing functional assessment instruments in order to come to a consensus on a common data set and measure of disability.124 From the beginning, there were concerns about the proprietary nature of existing tools, because acceptance of the instrument by rehabilitation facilities and a willingness on their part to submit data to a centralized location for storage and analysis was vital to the vision of a uniform national data system."125 The task force and representatives from the sponsoring organizations concurred on a need for a common repository to store information supplied by individual facilities, but how this was to be accomplished and regulated was a concern.

NARF, the American Hospital Association, and the National Easter Society co-authored a letter to project staff expressing their concern over the development of another proprietary software system, although they understood that without the means for collecting the data in a centralized location, it would be impossible to implement a uniform national data system. The task force was also concerned about the issues of public domain, access to data, impact on the industry, and copyrights to the data management system.126

In the grant proposal, it was envisioned that a sub-contractor for the data management service would be identified through a Request for Proposal (RFP). However, instead of putting out an RFP, the Task Force recommended that the project office for the grant proposal at the State University of New York at Buffalo create the data management system.127 It was anticipated that it would be three years before the data system could operate independently of grant support, at which time care facilities would bear the costs of maintaining the data service. The grant proposal stated: "It is likely that successful long-term maintenance of the national data system will be best achieved when one of several appropriate advocacy or regulating bodies assumes sponsorship of the system."128

Although there is significant dispute about whether the Task Force or researchers at the University of Buffalo "authored" the Functional Independence Measure, many accounts, as reflected by the literature in the rehabilitation field, as well as evidence produced in an the trademark case for the FIM, attribute a key role to the members of the task force.129 The minutes from the February 26, 1984 meeting of the Joint Task Force read: "At this point the Task Force split into three groups. The first group worked on identifying the demographics and supplemental measures to be collected, and coding system and instructions…. The second group of the Task Force members met to review available published functional assessment instruments, determine the most common functional status items and recommend items for a national data system, decide on how the functional status items should be grouped and whether additional optional items could be added, and to review functional status rating scales and recommend a common rating scale."130 Testimony in support of the Applicant (UBFA, Inc.) in the FIM trademarks case before the Trademark Trial and Appeal Board of the U.S. Patents and Trademarks Office, appears to contradict the meeting notes: "The National Advisory Committee was made up of representatives within the field of rehabilitation medicine selected and invited by UDSMR to function solely in an advisory capacity. The National Advisory Committee had no relationship with UB Foundation Activities, Inc. UDSMR is a division of UB Foundation Activities, Inc."131

Testimony on behalf of the Foundation in the trademark case credited Dr. Granger with being the primary creator and developer of the assessment instrument and the person who coined the term FIM. The American Medical Rehabilitation Providers Association (AMRPA), the Opposer in the trademark case to granting trademark status to the FIM, disputed the claims that the task force served only an advisory role.132

Text in the grant proposal read: "The proposed Uniform National Data System for Medical Rehabilitation will be developed by a Task Force of recognized experts in rehabilitation care, administration, research and evaluation, and coordinated through the resources of the State University of New York at Buffalo." Dr. Carl Granger, of the University at Buffalo was the Project Director, and Dr. Byron Hamilton, of the Rehabilitation Institute in Chicago was the Principal Investigator. The grant proposal stated that Dr. Granger and Dr. Hamilton "will draft, pilot, and field test the instrument and then refine it based on consultation in Chicago with the panel of experts." The grant proposal also stated that "The ACRM/AAPM&R Task Force (of which Dr. Granger was co-chair) and the ASIA/Spinal Cord Injury Model System consultants … will be responsible for developing the instrument and for subsequent revisions."133

The grant and its extension for the development and implementation of the Functional Independence Measure and the creation of a data management service ran from September 30, 1984 to September 29, 1987. The development of the software and the data management system were envisioned to take place during the second and third years of the project, but staff at the University of Buffalo had already begun working on the software prior to the end of the first year of the contract.134 The data management system created was originally called the Uniform Data System (UDS), and subsequently became UDSMR®.

As with other PAC assessment instruments, the history of the FIM is closely entwined with the history of the PPS for the care setting. For a quick summary, the Functional Independence Measure was developed in the middle 1980s, with funding from the U.S. Department of Education, to address the functional status of patients in rehabilitation facilities. In 1987, under contract to HCFA, RAND and the Medical College of Wisconsin investigated UDSMR® data and found that functional status instead of diagnoses alone did a better job of explaining total costs of caring for rehabilitation patients. In 1993, FRGs were developed by researchers at the VA Medical Center in Los Angeles as a possible basis for a PPS.135 In 1994, researchers at the University of Pennsylvania refined the FRGs by applying them to a large database of patient rehabilitation data maintained by UDSMR®.136 In 1995, RAND, again under contract to HCFA, used UDSMR® data to study the FRGs and found that they remained stable over time and could be used as a case mix methodology for a PPS.137 In 1997, HCFA published the criteria for a IRF PPS, and the Secretary of HHS established case mix groups, required IRFs to submit data to establish and administer the PPS, provided a computerized data system for group patients for payment, and provided software for data transmission. In 1999, the BBRA refined the PPS for IRFs, amending the Social Security Act to require the Secretary of HHS to base the case-mix groups on criteria deemed "appropriate to improve the explanatory power of functional independence measure-function related groups.138 Also in 1999, MedPAC issued a report urging Congress to implement an IRF-PPS as soon as possible and recommended that the PPS be based on the "FIM-FRG classification system."139

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