Health Data in the Information Age Use, Disclosure, and Privacy (1994) / Chapter Skim
Currently Skimming:
Public Disclosure of Data on Health Care Providers and Practitioners
Public Disclosure of Data on Health Care Providers and Practitioners
Pages 91-135
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From page 91... ...
results of evaluative studies on topics such as charges or costs and patient outcomes or other 91
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From page 92... ...
Fairness to patients involves protecting their privacy and the confidentiality of information about them, as examined in Chapter 4. Fairness to the public involves distributing accurate, reliable information that is needed to make informed decisions about providers and health care interventions; the broader aims are to promote universal access to affordable and competent health care, enhance consumer choice, improve value for health care dollars expended, and increase the accountability to the public of health care institutions.
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From page 93... ...
Despite new efforts at that time by employers, insurers, business coalitions, and states to collect and disseminate such information, the authors concluded that, "it remains uncertain whether disclosure of information about health care costs will do much to modify consumers' choices of health plans, 2 In all likelihood, people will have more, and be more attentive to, information about their own health insurance plans than about cost or quality information on health care providers. Marquis (1981)
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From page 94... ...
3 Quality indicators in the OTA (1988) report included: hospital mortality rates; adverse events; disciplinary actions, sanctions, and malpractice compensation; evaluation of physicians' performance (care for hypertension)
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. The committee believes that HDOs can produce significant and reliable information and that the presumption should be in favor of data release.
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, the work of the Pennsylvania Health Care Cost Containment Council on hospital efficiency (PHCCCC, 1989) and on coronary artery bypass graft (PHCCCC, 1992)
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From page 97... ...
, Washington Checkbook presented information on pharmacy prices for prescription drugs and for national and store-brand health and beauty care products; it also reported on hospital inpatient care quality Judged in terms of death rates) and pleasantness (evaluated in terms of staff friendliness, respect, and concern)
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From page 98... ...
. Who Is Identified The main objects of such requests and the ensuing analyses tend to be large health plans to hospitals, physician groups, individual physicians, and nursing homes.
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From page 99... ...
In the future, attention can be expected to shift to outpatient care and involve the ambulatory, office-based services of health plans and physician groups in primary or specialty care and of individual physicians. In these cases the stance in favor of public disclosure may become more difficult to adopt fully, for three reasons: the problems alluded to above for hospitalbased physicians become exponential for office-based physicians; the clear, easy-to-count outcomes, such as deaths, tend to be inappropriate for officebased care because they are so rare; and quality-of-life measures, such as those relating to functional outcomes and physical, social, and emotional well-being, are more significant but also more difficult to assess, aggregate, and report.
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From page 100... ...
In this situation, clear winners and losers are neither expected nor likely, but establishing benchmarks that all can strive to attain should, in principle, contribute to better performance across all institutions and practitioners. 6 The prospect that particular institutions, health plans, or individual practitioners might rate less well than others, but not necessarily poorly, and thereby lose patients to others is possible (and perhaps probable)
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From page 101... ...
New York State Department of Health, et al.) and ruled that physicianspecific mortality rate information be made public pursuant to a Freedom of Information Law request.
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From page 102... ...
For example, good or bad ratings for a hospital on death rates for congestive heart failure or acute myocardial infarction might well be generalizable to that hospital's performance on pneumonia or chronic obstructive pulmonary disease (Keeler et al., 1992b) , but they might well be completely irrelevant to ratings for asthma in children, hip replacement, or management of high-risk pregnancies.
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From page 103... ...
In its recent report, the Cleveland group provides data separately for various quality measures, which include intensive care mortality and length of stay (LOS) , medical mortality (for acute myocardial infarction, congestive heart failure, stroke, pneumonia, and chronic obstructive pulmonary disease)
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From page 104... ...
Some choices in the category of other-than-alphabetic ordering present special problems or considerations. For one, the distinction implied above between descriptive and evaluative information may be incorrect or not always applicable.
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From page 105... ...
COMMITTEE FINDINGS AND CONCLUSIONS To this point the committee has considered issues of public disclosure of information, particularly descriptive or evaluative data on costs or quality, by or under the auspices of HDOs. Its views do not extend to certain other kinds of data banks or repositories, such as computer-based patient record systems of individual hospitals and health plans or internal data files of commercial insurance carriers.
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From page 106... ...
The second requirement is that HDOs make appropriate data available for others to use in such studies and analyses, with the expectation that the results of the work will be publicly disclosed; that is the thrust of a recommendation on advocacy of data release. Finally, to promote these aims, the committee has urged that HDOs keep prices for providing data and related materials as low as possible, as noted in the section on related issues Advocacy of Analyses and Public Disclosure of Results RECOMMENDATION 3.1 CONDUCTING PROVIDER-SPECIFIC EVALUATIONS The committee recommends that health database organizations produce and make publicly available appropriate and timely summaries, analyses, and multivariate analyses of all or pertinent parts of their databases.
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From page 107... ...
, the enabling statutes themselves should contain such requirements. RECOMMENDATION 3.2 DESCRIBING ANALYTIC METHODS The committee recommends that a health database organization report the following for any analysis it releases publicly: .
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From page 108... ...
Publicizing descriptive facts on providers who do render health care services to the populations covered by these smaller HDOs will, however, likely be a useful step. Minimizing Potential Harms Up to this point, the committee has taken an extremely strong prodisclosure stance toward comparative, evaluative data, but it sees some potential for harm in instantaneous public release of comparative or evaluative studies on costs, quality, or other measures of health care delivery.
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From page 109... ...
RECOMMENDATION 3.3 MINIMIZING POTENTIAL HARM The committee recommends that, to enhance the fairness and minimize the risk of unintended harm from the publication of evaluative studies that identify individual providers, each HDO should adhere to two principles as a standard procedure prior to publication: (1) to make available to and upon request supply to institutions, practitioners, or providers identified in an analysis all data required to perform an independent analysis, and to do so with reasonable time for such analysis prior to public release of the HDO results; and (2)
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From page 110... ...
Specifically, they can serve as a key repository of data to which many other groups should have access. RECOMMENDATION 3.4 ADVOCACY OF DATA RELEASE: PROMOTING WIDE APPLICATIONS OF HEALTH-RELATED DATA To foster the presumed benefits of widespread applications of HDO data, the committee recommends that health database organizations should release non-person-identifiable data upon request to other entities once they are in analyzable form.
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From page 111... ...
The latter pertains to specific patients or other individuals and might include persons residing in the community who appear in population-based data files but have not received health care services. The dis tinction is made because individual practitioners or clinicians, who might well appear in the databases as patients or residents of the area, could be identified or identifiable by their professional roles (in line with earlier recommendations in this chapter)
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From page 112... ...
It concluded, however, that the practical aspects of insisting that HDOs police the actions of their data recipients were too difficult to make this step an integral part of HDO operations. Certain kinds of database organizations, already in existence for some years, have long experience in designing descriptive, public-use data tapes that are consistent with all the principles of privacy and confidentiality advanced in Chapter 4.
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From page 113... ...
It also believes that HDOs would do well to require, as a condition of data release, that entities or investigators conducting secondary analysis of these data adopt the same precept. i} Moses (1990, p.
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From page 114... ...
It has the further advantage of conveying to the public that absolute protection of the identity of individuals when their information is in a computerized data bank is very difficult, if not impossible. Consistent with the principles developed in Chapter 4 on access to person-identifiable information for researchers, the committee argues that appropriately qualified, institution-based researchers with approvals from their institutions' Institutional Review Boards can receive data with intact identifiers.
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From page 115... ...
These analysis consultants would compete to do analyses for any outside requester and to release to the requester analysis results that do not permit or include patient identification. The rationale for this suggestion is that "outsiders," such as newspapers, employers, consumer organizations, or other nonacademic organizations, will find it difficult to meet the Institutional Review Board requirements for direct access to patient-identified data (a condition elaborated in Chapter 4 on privacy and confidentiality)
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From page 116... ...
STRENGTHENING QUALITY ASSURANCE AND QUALITY IMPROVEMENT PROGRAMS Data Feedback The primary focus of this chapter has been on actions HDOs might take to make reliable, valid, and useful information on health care providers and practitioners easily available to the public. The committee concluded that HDOs could help improve the quality of health care through more direct assistance to health care institutions, facilities, and clinical groups.
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From page 117... ...
For example, they may opt to postpone public release of their own evaluative studies or insist on delay by groups to whom they provide data until the information has been made available to providers for their use in QA/QI programs. This option would probably entail more delay before public disclosure than is assumed for the earlier recommendation about supplying such data for providers to reanalyze for possible challenge to or comment on HDO studies.
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From page 118... ...
. For a recent description of industrial quality improvement systems, see Blumenthal (1993)
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From page 119... ...
It cautions, nonetheless, that HDOs need to be alert to the possible drawbacks of making information privately available in these circumstances and to take appropriate steps to minimize them. Peer Review Information Some kinds of quality-related information, developed through formal QA/QI and peer review efforts, are not covered by this discussions The content of private peer review efforts, for instance, those of hospital QA committees or other investigative or disciplinary actions, are protected from i5 Issues relating to selective contracting for HMOs, IPAs, PPOs, and other types of health plans that may emerge in the coming years of health care reform go well beyond those mentioned in Chapter 2.
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From page 120... ...
PROs clearly provide considerable information to individual physicians under review and to the hospitals where they practice. PRO regulations, however, hold most quality-related information to be confidential and not subject to public disclosure,l8 and PROs are exempted from the require 17 Privacy protections for individual practitioners are also part of the procedures followed by the National Practitioner Data Bank, which was created by the Health Care Quality Improvement Act of 1986 (P.L.
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From page 121... ...
The committee believes that public disclosure of information, particularly evaluative or comparative data, must give due regard to the possible harms that may unfairly be suffered by institutions and individuals. The committee thus takes the position that public disclosure is a valuable goal to pursue, to the extent that it is carried out with due attention to accuracy and clarity and contributes to the QA/QI programs that health care institutions and organizations conduct internally.
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From page 122... ...
It recommends that to enhance the fairness and minimize the risk of unintended harm from the publication of evaluative studies that identify individual providers, each HDO should adhere to two principles as a standard procedure prior to publication: (1) make available to and upon request by institutions, practitio ners, or providers identified in an analysis all data required to perform an independent analysis, and do so with reasonable time for such analysis prior to public release of the HDO results; and (2)
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From page 123... ...
This appendix attempts to illustrate the pitfalls that may confront even relatively straightforward public disclosure activities, using information that is in the public domain from the statewide study in New York State on hospital-specific deaths following coronary artery bypass graft (CAB G)
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From page 124... ...
FIGURE 3A-1 The number of patients undergoing coronary artery bypass graft in each hospital in New York State, 1991.
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From page 125... ...
Josephs Winthrop Presbyterian University Hospital Binghampton General Erie County Montefiore Moses Bellevue Beth Israel Montefiore Weller 0.00 lQ00 20.00 30.00 40.00 Hospital Deaths FIGURE 3A-2 Actual (observed) number of patients who died in the hospital after coronary artery bypass graft in each hospital in New York State, 1991.
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From page 126... ...
Josephs Montefiore Moses Montefiore Weller HEALTH DATA IN THE INFORMATION AGE 1 ' ' ' ' 1 ' ' ' ' 1 ' ' ' ' 1 ' ' ' ' 1 ' ' ' ' 1 ' ' ' ' 1 0.001.00 2.00 3.00 4.00 5.00 6.00 7.00 Hospital Deaths, Observed Percentage Mortality FIGURE 3A-3 Actual (observed) proportion of patients who died in the hospital after coronary artery bypass graft in each hospital in New York State, 1991.
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From page 127... ...
By extension the same process can be applied to determine physician-specific outcomes; in this example, mortality rates by surgeon. It can be argued that properly risk-adjusted hospital mortality rates, and their conversion by one or another means to inferences about quality of care, is a fair method of comparing providers.
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From page 128... ...
A public release containing only this information is an attractive option on practical grounds, but it may not be fair. Some readers will intuitively realize that one or more other institutions may also have somewhat inferior outcomes, and thus are different from the others in the group, but this conclusion will not have as high a degree of certainty as for hospitals X, Y
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From page 129... ...
It also portrays the small differences that sometimes separate these facilities. Thus, this committee believes that HDOs must realize that the fairest approach to the public release of evaluative information involves disclosing rankings of all actual data as well as derived data along with appropriate explanations.
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From page 130... ...
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From page 131... ...
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From page 132... ...
Peters Univ. Hospital Brooklyn Bellevue HEALTH DATA IN THE INFORMATION AGE 1 0.00 1.00 2~ 00 400 Moo ~00 7.00 8.0/0 Risk-Adjusted Percentage Mortality FIGURE 3A-4 The risk-adjusted percent mortality from coronary artery bypass graft in New York State, 1991, shown numerically in Table 3A-1 The higher the risk-adjusted percent mortality, the less the perceived expertise of the institution.
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From page 133... ...
Hospital Brooklyn Bellevue _, 3~00 ~2aOO -1~00 MOO 1~00 2~00 3~00 4~00 Observed- Expected Percentage Mortality FIGURE 3A-5 The computed difference between the observed (actual) and the expected percent mortality from coronary artery bypass graft in New York State, 1991.
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From page 134... ...
percent mortality. The smaller the ratios, the greater the expertise of the .
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From page 135... ...
Vincents ... _ ~ I ~ I ~ I ~ I ~ I ~ I ~ l I I .05 .1 .2 Low Risk P Value for Difference in Observed and Expected Plortality .2 .1 .05 High Risk FIGURE 3A-7 The P-value for the difference in observed and expected mortality from coronary artery bypass graft in each institution in New York State, 1991.
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