[Dr. Buck is a charter member of the HL - 7 Special Interest Group on Accountability, Quality and Performance (SIGAQP).]
The following is generated by invitation in response to questions provided in a letter from J. Michael Fitzmaurice, Senior Science Advisor for Information Technology (AHCPR), March 12, 1999. It is anticipated that these responses may generate questions or a need for additional clarification. It is the Joint Commission's intent to welcome such dialogue and participate in subsequent considerations in any fashion thought helpful. On behalf of our organization, I express our appreciation for this opportunity to communicate with the Committee.
> Data or information documented and retrievable from one or more sources in "hard copy" or in electronic form, pertinent to an individual, used to describe and measure their health status and health care interventions over time and across settings, to facilitate their health care management by qualified professionals and other personnel.
To assist the engagement of this response to those that may be provided from a more technical (standards) perspective, the following additional narrative is offered:
For an individual patient, PMRI forms a chronicle of health status and interventions. It can include demographics, orders, schedules, clinical pathways (e.g. care plans and protocols) observations, results, diagnoses/problems, allergies, medications, etc. For clinical service events, PMRI describes the clinical and operational context and ascribes accountability: who, what, when, where and, as applicable, why, how and under what conditions.
PMRI is encompassed in a personal health record for individual patients/members. PMRI is also a foundation to the operations (business) record for health care providers and to the service record for individual practitioners.
PMRI forms a longitudinal chronology with essential views:
> Aside from management of individual health matters, functions of PMRI include: organizational management, process assessment and improvement, oversight and accountability, research, and education.
> Requirements for precision and accuracy vary with the application; however, excessive variance building to erroneous conclusion or perception may result in death or morbidity for the individual or to analogous flaws at aggregated or comparative levels.
> To support meaningful utilization of PMRI these attributes must exist in appropriate balance for any given application. See response to item 3 below.
> Yes, most essentially because there is still no uniform, generally promulgated consensus, to my awareness, about definitions, criteria or standards for these terms or concepts in reference to PMRI.
> These are identified by their potential "solutions" in 2 C. below.
> Confidentiality legislation; "universal" patient and provider identifiers or techniques to generate same; standardized chart format and component categories or capability to achieve same; electronic patient record; standardized data element fields and definitions; core data sets e.g., "the front sheet," and the "universal" billing form; aggregation rules, coding and coding audit methodology, methodology to accurately follow and aggregate resource use; etc. (See "General Comment" section at the end of this statement.)
Again, to assist the engagement of the response in this section to those that may be provided from a more technical (standards) perspective, the following additional narrative is offered:
A standards focus on information flow is essential, tracking PMRI from the point of origin (typically the point of service) to the point of use, including record stewardship and key aspects of accountability, auditability, data integrity (accuracy, consistency, completeness, persistence). PMRI flow may traverse multiple application systems through various interconnections (interfaces) and may be subject to various methods of transformation, aggregation, derivation and summarization.
> The private sector is making progress, especially in developing proprietary aspects, but not enough has been achieved in consensus-based, national standardization as above.
> Yes, all of the above. There is a role in consensus building to support development and maintenance of regulatory and recognition approaches consistent with the entities listed above and others. (See also response to item 4 B.)
> Yes. The issues are urgent.
> Yes. Experience suggests that this is an ongoing process influenced strongly by a changing environment, advances in knowledge, etc. The difficult but essential significance of maintaining "updates" to ICD9-CM/ICD10 is a good example.
> Needed are consensus constructs to address these questions at the measure (data element) and at the application levels. Such constructs would have to begin by presenting definitions of these terms. Such definitions would have to consider various aspects of each that include:
> Also, at the individual patient record level, non-measure elements, i.e. narrative entries, need to be addressed through standard vocabulary and terms, standard entry categorization, format rules, etc. Applicable standards and criteria for accountability (identification and validation of source, completeness, time of entry, etc. and integrity ("honesty," completeness or "wholeness," and permanence or persistence, i.e., non-alteration) apply to data elements (field entries and measures) as well as narrative.
> Yes, but to the best of my knowledge, there are none that are sufficiently comprehensive and uniformly applied across a large enough spectrum throughout the country.
> All of the above, implemented with sufficient consistency and within a broad, comprehensive, consensus-based framework
> To provide, in sufficient detail, the technical implementation requirements that would support identified data and information applications e.g., as listed in 1 B, plus aspects listed in item 3, above.
> Yes. The word "facilitate" is well chosen.
> Probably not alone, nor in a sufficiently expedited time frame.
> As above. Initially, the government probably best serves as a facilitator, especially in identifying significant activities in consensus development and in identifying and evaluating expert opinion, then as a consolidator (and occasionally as a driver) through regulation. In addition, the government should fund joint, non-proprietary private-sector initiatives. Through various mechanisms, the government must also keep abreast of technical, regulatory, and implementation practices and refinements, as appropriate, in other countries. It must be prepared, increasingly, to work at an international level to achieve the same goals pertinent to DQAI and other aspects of PMRI data management at a national level.
> Yes. From a practical standpoint, however, such developments must either be congruent or complementary -- certainly not inconsistent or in conflict. An important example of current activity is the Performance Measurement Coordinating Council (PMCC) sponsored by the American Medical Accreditation Program (AMAP), the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) and the National Committee for Quality Assurance (NCQA). In this regard, the federal government should participate in private initiatives and then use its leverage, selectively, as a purchaser of health care to implement results of these efforts (rather than establish contract specifications that ultimately become de facto standards).
> Where does this all need to go? What are we trying to assist and accomplish by considerations of DQAI and other data-related and information building challenges in the current environment?
A) Value and Quality in Health Care - PMRI must be supportive of addressing and communicating aspects of quality and value at the patient or various aggregate levels -- groups and subsets, communities, regions, and nation. Quality, costs (resources), and improvement are the key factors that define value. Data and data-based products must be capable of depicting these aspects in meaningful ways and in supporting analysis of their relationship and impact.
B) Definition of Quality in Health Care - Until data and data management infrastructure are sufficiently refined to allow the depiction of probabilities related to clinical outcomes resulting from various interventions, including preventive measures [probabilities being the core of the well-accepted definition of health care quality provided by the Institute of Medicine (IOM) a decade ago], an interim approach should be defined that would be workable with near-term capabilities but that would also build to address fully the IOM definition in the future.
Key components of an interim proxy definition for health care quality would involve, in any given situation, compliance with science (the “evidence base” when possible), consistency with wisdom-based process and outcome goals, "customer" satisfaction and perception, and selected aspects of oversight and accountability (compliance). Each of these components have direct, visible linkage to types of measures built from PMRI data and are supportive of essential functions such as research and education, as well as change over time, and (hopefully) improvement.
> Why are we trying to move such efforts as PMRI forward and how can we, in any sector of the health care industry, begin to assess success?
C) PMRI efforts are fundamental to the achievement of:
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