Accountability Without Health Care Data Banks

To the Editor:

Norman Daniels and James Sabin offer an important reminder that managed health care needs to become publicly accountable for its influence upon clinical care ("The Ethics of Accountability in Managed Care Reform," Health Affairs, September/October 1998). However, policymakers should be wary of achieving such accountability at the expense of patient/clinician confidentiality, patients’ choice of physician, and quality of care.

For example, the proponents of health care data banks for monitoring accountability are asking clinicians and patients to pay a high price; their proposed mechanism is likely to be ineffective and may even damage the quality of care by eroding the privacy necessary for stable physician/patient alliances. [1] Also, the Clinton administration and others have proposed patients’ bills of rights to improve choice of providers and quality of care. The significant record-keeping requirements of these bills may actually produce an opposite effect: decreased patient choice.

Proponents of these measures argue that these outcomes are necessary tradeoffs for greater accountability on the part of clinicians. However, not only patient choice but authentic clinical and organizational accountability are the likely casualties of overemphasis on record-keeping provisions.

Onerous documentation requirements increase the likelihood of health care monopolies and the risk that such monopolies will be accountable only for maintaining profits, not for implementing solid health policy goals. Moreover, bad data are worse than no data. Outcomes measures are still in their infancy and are at best partial and experimental. Current measures are misleading and can be manipulated by corporate statistical "spin doctors." The most likely outcome of the proposed documentation mandates is that "hard," albeit invalid, quantitative data will drive out soft, qualitative, but more relevant clinical data. Moreover, invalid hard data are likely to be used for "economic credentialing," to exclude from provider panels those clinicians who put high-quality patient care ahead of managed care’s cost-driven guidelines.

There also is reason to expect that the proposed record-keeping requirements will further reduce the degree of confidentiality that patients can expect from their physicians. The requirement for a national health data system that records diagnostic codes, requires a national health identification number, and makes information accessible to law enforcement under the Health Insurance Portability and Accountability Act of 1996 is only the clearest case. [2] In today’s managed care environment, time pressures, clinicians’ potential economic conflicts of interest, and mandated data-gathering requirements that invade patients’ privacy further erode patients’ trust in physicians. When documentation, rather than the goals of clinical care, becomes a priority, it distracts and obstructs the healing potential of an effective doctor/patient relationship. Relying on the managed care industry to implement health care outcomes measures is more likely to prevent rather than to foster genuine clinical accountability. Sick and already anxious patients should not have to wonder why their doctor is asking them questions and who is likely to be privy to their answers.

There are a variety of ways to create genuine accountability without sacrificing patient choice or confidentiality. These include the evaluation of single case studies, controlled clinical trials, and systematic peer consultation. Continuing medical education is a vital but often neglected tool for measuring quality and health care accountability. So is allowing patients to secure a second opinion through a consultation. Such consultations are less likely than are outcomes measures and guidelines to be subject to the covert influence of managed care organizations. While well constructed studies with randomization and patient consent can contribute to the outcomes debate, especially research not funded by the health care industry also needs to be expanded.

Clinical accountability can best be ensured by renewed adherence to primary standards of clinical care such as good doctoring and securing informed consent, not in a pro forma manner, but as part of the process of high quality treatment. Too many patients now experience de facto captivity because they lack a choice of health plans or providers. [3] The proposed data-collection mandates do not allow patients to opt out of having their health care data collected at all. Yet such mandated data collection and documentation subject patient care to nonconsensual and, at best, experimental influence and manipulation, because the usefulness of databases is unproven. For the government to impose what amounts to an experimental health care practice by assuming that care should be organized so that its outcomes are "measurable" is contrary to the goals of accountability, ethical concerns, and high-quality care.

Harold J. Bursztajn
Harvard Medical School
Cambridge, Massachusetts

Richard Sobel
Harvard Law And Medical Schools
Cambridge, Massachusetts

NOTES

  1. H. Bursztajn et al., Medical Choices, Medical Chances: How Patients, Families, and Physicians Can Cope with Uncertainty (New York: Routledge, Chapman, and Hall, 1990).
  2. R. Pear, "Plan Would Broaden Access of Police to Medical Records," New York Times, 10 September 1997, 1.
  3. H. Bursztajn, "Medical Necessity, Managed Health Care, Denial of Benefits, and the Nuremberg Code" (Presentation to the symposium, "Medical Ethics:Who Gets the Care?," Princeton University, 29 May 1997).