Health Data in the Information Age Use, Disclosure, and Privacy (1994) / Chapter Skim
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Health Databases and Health Database Organizations: Uses, Benefits, and Concerns
Health Databases and Health Database Organizations: Uses, Benefits, and Concerns
Pages 40-90
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the promotion of community-based health information systems and (2) the promotion of patient care information systems that collect data at the point of care or as a by-product of the delivery of care (Sec.
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When this is so, they can say little, with confidence, about the value of the investment in health care for population subgroups, regions, or the nation as a whole. In principle, this information can be acquired through numerous avenues, such as surveys, electronic financial transactions for health insurance claims, computer-based patient records (CPRs)
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11) : "A primary patient record is used by health care professionals while providing patient care services to review patient data or document their own observations, actions, or instructions.
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This committee did not examine these technical issues, although they pertain as well to large-scale regional HDOs; arguably, the government and the private sector will need to move more forcefully on development of such standardsperhaps moving beyond near-total reliance on voluntary efforts if CPRs, CPR systems, and regional health databases and networks are to succeed.
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. A record that is comprehensive contains: demographic data, administrative data, health risks and health status, patient medical history, current management of health conditions, and outcomes data.
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Schooling and education Indicator of socioeconomic class Administrative Unique identifier Health insurance eligibility and membership Dual coverage when appropriate Required copayments and deductibles "Insurance claim" information, e.g., charges for diagnostic tests and procedures and amounts paid Provider and provider identification number Type of practitioner Physician specialty Type of institution Provider-specific authorization and date for informed consent Health risks Health-related behavior, e.g., use of tobacco products and seat belts, exercise Genetic predisposition Health status Physical functioning (or health-related Mental and emotional well-being quality of life) Cognitive functioning Social and role functioning Perceptions of health Medical history Past medical problems, injuries, hospital admissions, pregnancies, births Family history or events (e.g., alcoholism or parental divorce)
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Health status and quality-of-life measures are commonly considered outcomes of health care, but evaluators and researchers also need such information to take account in their analyses of the mix of patients and the range of severity of health conditions. · Patient medical history involves data on previous medical encounters such as hospital admissions, surgical procedures, pregnancies and live births, and the like; it also includes information on past medical problems and possibly family history or events (e.g., alcoholism or parental divorce)
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in commercial insurance plans; persons receiving care from specific kinds of providers or in certain settings (e.g., prehospital emergency care from emergency medical services and hospital emergency departments'; persons with a given set of conditions (e.g., a cancer or trauma registry) ; an age group such as those age 65 and older (e.g., Medicare beneficiary files';5 residents of a defined geographic area or political jurisdiction or scientifically selected samples of individuals, as in major health surveys.
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In defining an all-patient database, the commissioners appear to have in mind what this committee terms inclusiveness; what the PPRC report lays out as "core data elements" in that database approaches what the IOM report calls comprehensive ness.
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Such studies require not only unique identifiers for patients and providers (see below) but also a record structure that permits analysts to link dates and times with patient care events, problems, and diagnoses.
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Given the evolving nature of state and national health care reform plans and programs, movement toward electronic data interchange (EDI) , progress toward CPRs, and emergence of various hybrid arrangements for financing and delivering health care, the development of HDOs is taking place in very different (and perhaps unpredictable)
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Individuals sampled from the Medicare enrolled population are interviewed three times a year. The survey includes demographic and behavioral data, health status and functioning, insurance coverage, financial resources, family support, source of payment, use of Medicare and non-Medicare services, and access and satisfaction.
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Such identifiers may be neither reliably unique nor universal in the sense of linking health databases. Providers also assign identifiers to patients usually a medical record or account number but they are not universal, as they are not used beyond that specific provider, and generally they cannot be matched to identifiers assigned by other providers, plans, or programs.
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As with patient identifiers, unique identifiers for providers will ideally be consistent over time and used for one and only one individual institution or clinician. Failing that, HDOs will need to find ways to link multiple identifiers (e.g., when a physician belongs to more than one health plan or bills from different addresses with different tax numbers)
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· The data will be comprehensive in the kinds of data included about individuals and will include not only administrative and clinical information, but also information about health status and satisfaction with care.
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They are not, however, typically viewed as primary patient records (e.g., a computer-based patient record) , and they are not meant to be simply passive archives or warehouses for health information.
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Far-thinking experts envision a time when regional entities will be linked across the nation, even if their governance and operations remain close to home. This creates the very long-range view of a national health data repository operated by a single organization or a federation of regional or state entities.
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Eventually, it is expected that the database will include information from every clinical setting. RHI Group is able to track patient care over time because it has Social Security numbers in the database.
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The unified database is to be developed by a subsidiary group, Vermont Health Care Information Consortium, using files of all providers, a uniform insurance claims form, and electronic claims submission. The claims-driven health care database is intended to provide policy-related information such as aggregate levels of expenditures and utilization by sectors; it will include Medicare, Medicaid, Blue Cross and Blue Shield, and other provider or insurer groups (e.g., HMOs)
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Electronic switches or clearinghouses process bills and insurance forms from hospitals, physicians, laboratories, pharmacies, and other sites by electronically forwarding claims and encounter information to the insurance carrier, health plan, or third-party administrator. The second component is a data repository, the main focus of this committee's interest.
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· Patient satisfaction surveys and health status questionnaires This information will be obtained from the patient (or possibly a family member in the case of, e.g., minor children) , on either a routine or a sample basis.
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programs and for regional health planning. Many HDOs (especially those developed with public funds and by legislative mandate)
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· Health planning How might the acquisition, location, operation, and financing of facilities, capital equipment, health personnel, and other resources be made more rational, more affordable, and more responsive to clear community and regional needs? 9 At the time this study was conducted, the Hartford Foundation sponsored a separate study from researchers at the Harvard School of Public Health to examine questions related to the establishment of an "Institute for Health Care Assessment," which would have as a major goal the advancement of quality measurement and improvement.
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Health care provider organizations and practitioners Provider organizations include physicians in solo practice and large multispecialty groups; managed care groups such as HMOs, IPAs, and PPOs; free-standing surgery centers and other ambulatory care facilities; institutions such as hospitals and nursing homes; and enterprises such as pharmacies, clinical laboratories, and home health agencies. · Patients, families, and community residents in general The information in HDO databases may also be valuable for active patients and their
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. Health agencies At the federal level, at least three PHS agencies might find HDO databases of considerable value in their daily operations (beyond the clear contributions that such databases would make to outcomes and effectiveness research)
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may become obsolete. In some cases, uses of HDO data are illustrated by reference to databases held by organizations or public agencies that approach the HDO concept (see Table 2-41.
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To the extent the latter overlap with the vulnerable populations noted above, many would regard this use of HDO data as undesirable. Assessing Costs and Identifying Opportunities for Savings Curbing health care expenditures includes placing global limits on spending and linking fees to changes in the volume of services.
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from numerous teams of investigators has appeared since that time.ll Statewide databases have also been used for research projects on mortality rates following open heart surgery. One example comes from the New York State Cardiac Surgery Reporting System (Hannan et al., 1989b, 1990, 1991a; Zinman, 1991; see also Chapter 3 of this report)
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began an ambitious research program whose grantees are known as Patient Outcomes Research Teams (PORTs) (AHCPR, 1990a, 1990b; Raskin and Maklan, 19911.
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Both can be traced to earlier analyses on variations in the use of transurethral prostatectomy for benign prostatic hypertrophy, which had been based on data contained in large-scale databases (see the citations in footnote 10~. The committee thus placed great emphasis on the need to expand such uses of health databases including those expected to be assembled by HDOs to address the myriad health services research questions that now confront this nation.
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Planning and Monitoring Patient Care Health care practitioners will be able to use the information in HDO databases in many patient care responsibilities. Examples of such applications include: checking patients' allergies to medication, obtaining patient histories at the time of patient-practitioner encounters, planning the management of complex cases, and fostering better communication among all providers rendering care to an individual patient and between clinicians and ancillary personnel.
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Even for those who are not patients or relatives of patients at any given time, HDO databases may be of value. Descriptive information on primary care physicians, specialists, other caregivers, and health plans (e.g., location, special aspects of a practice or facility, or usual charges)
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From page 76... ...
The closer that these databases approximate the medical record, the more exact reimbursement strategies will become and the less time can be spent on record requests and appeals. Operating Managed Care Programs Providers or others may find HDO databases helpful in identifying likely high-cost patients who would benefit from case management and in streamlining Recertification tasks.
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From page 77... ...
More broadly, payers and purchasers might be able to determine the risks they face with respect to future demand for health care more accurately from such databases than they could in the past. If HDO databases are reasonably inclusive, TPPs and TPAs might then be able to understand better how such demand might vary by geographic area or population group and how it might change over time.
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Other Business-related Uses Nearly three-quarters of employers with 1,000 or more employees manage self-insured health plans (Foster Higgins, 1991, in IOM, 1993e)
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Tracking Injury and Illness, Preventive Care, and Health Behaviors Those studying and having responsibility for public health efforts can be expected to use HDO databases for a broad set of applications. These include analyses of the incidence of injury and disease and studies of the prevalence of trauma-related health problems and chronic illness.
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From page 80... ...
HDOs might also maintain information about blood type, organ donors, and tissue matching in their databases, as a means of fostering improved blood banking and organ procurement and transplant services. Promoting Regional and Community Health Planning, Education, and Outreach Health Planning and Education When HDO databases are statewide, or sponsored by state health departments, the potential uses by states and all subordinate levels of government for health planning, health care delivery, public health, and administrative responsibilities become quite extensive; they can involve the health departments and social services agencies of states, counties, and municipalities in many overlapping efforts.
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For example, recognition that bicycle accidents are a major source of children's head injuries could lead to community education programs in schools and neighborhood associations. Public-sector agencies, academic centers, or consumer groups might pursue such public health efforts by analyzing HDO data and developing community-specific informational materials (e.g., public information brochures on sources of care for special problems)
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Financial and credit institutions might be interested in health plan and hospital data to determine market share or estimate solvency for a given group practice or facility. In general, this committee takes an extremely negative view toward giving these groups access to HDO files, particularly any data that might conceivably identify individual persons, and thus these uses are not explored further here.
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Patient record users provide, manage, review, or reimburse patient care services; conduct clinical or health services research; educate health care professionals or patients; develop or regulate health care technologies; accredit health care professionals or provider institutions; and make health care policy decisions" (IOM, 1991a, p.
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Further, despite the promise that HDOs hold for addressing certain health policy issues, this committee emphasizes that information derived from the files of HDOs and similar entities will not be the solution to all the ills of the health care system. Information may be incomplete or untimely, lack critical variables such as health status, or otherwise be imperfect.
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Developers must ensure that the data in their systems are of high enough quality that the descriptive compilations, the effectiveness research, and the comparative analyses envisioned can be done in a credible, defensible manner. (McNeil et al., 1992, describe limitations of current data systems for profiling quality of care, especially at the individual provider level.)
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information on insurance claims forms for outpatient care exist to this day; the underlying problem is that payment mechanisms do not depend so heavily on outpatient diagnostic data that is, the information is not used in the same way as inpatient data so little incentive exists to record diagnoses accurately.~7 The least that can happen in these instances is that those data elements consume computer memory; the worst is that the data will be used in ways that contaminate an entire study or cause unwarranted harm to individuals, groups, or practitioners. Second, data must be accurate and analyzable.
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This requirement implies that due attention will be paid to the quality of new categories of data that may become available for HDOs in the future. RECOMMENDATION 2.1 ACCURACY AND COMPLETENESS To address these issues, the committee recommends that health database organizations take responsibility for assuring data quality on an ongoing basis and, in particular, take affirmative steps to ensure: (1)
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The committee believes that the best method of enhancing the comprehensiveness of HDO databases and the accuracy and completeness of data elements is to move toward CPRs in which the desired variables themselves, rather than high-level abstraction and proxy coding systems, could be accessed. This committee does not wish to convey the impression that the transition to CPR systems is anything but an extraordinarily difficult task.
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RECOMMENDATION 2.2 COMPUTER-BASED PATIENT RECORD Accordingly, the committee recommends that health database organizations support and contribute to regional and national efforts to create computer-based patient records. The committee acknowledges the importance of computer-based patient records with uniform standards for connectivity, terminology, and data sharing if the creation and maintenance of pooled health databases is to be efficient and their information accurate and complete.
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From page 90... ...
The first is that considerable benefits will accrue to interested consumers and to the public at large from having access to accurate and timely information on these aspects of the health care delivery system with which they deal; this has been the thrust of the present chapter. The other assumption is that HDOs supported by public funds ought to have a stated mission of making such information available, and this will be a core element of several committee recommendations.
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