The Senate's vision for health care reform - the "Patient Protection and Affordable Care Act" - would create a "Patient-Centered Outcomes Research Institute." This institute would aim to compare the effectiveness of different treatments to "assist patients, clinicians, purchasers, and policy-makers in making informed health decisions." ("Purchasers" refers to public, private and employer-sponsored health insurance.)
As the founding editor of "The Patient - Patient-Centered Outcomes Research" - the first medical journal devoted exclusively to informing the health care system about patients' needs and wants - I have several reservations.
It is unclear how the institute will define, let alone meet, the often-competing interests of patients, clinicians, purchasers and policymakers. While clinicians, purchasers and policymakers have adequate means and resources for advancing their interests, it is questionable whether the patient's voice will be adequately represented in this process. Despite the many patient organizations representing specific diseases, only a few are active in research, and these may be tarnished through funding by pharmaceutical companies. Furthermore, unlike clinicians and purchasers who are bound together by their commercial and professional interests, representing the range of patient perspectives is difficult and expensive.
"Patient-Centered Outcomes Research Institute" sounds like a more politically palatable name for an "Institute for Comparative Effectiveness Research." Like other such agencies internationally, the bill gives the institute the power to determine the "appropriateness of medical treatments." International experience demonstrates that "appropriate" is defined as cost-effective or budget minimizing (although our senators have carefully avoided such terms). Also like its international counterparts, the institute would be placed at arm's reach from government, to ensure lawmakers have plausible deniability with regards to health care rationing.
Finally, similar institutes internationally have been criticized for promoting "one-size-fits-all" medicine by ignoring variations in needs and wants across patient populations. While the institute will consider "variations in patient subpopulations," it is unclear what characteristics will define such subpopulations.
A centralist and paternalistic approach is found throughout bill's description of the institute. Already a number of professional organizations have expressed concern that the institute would control the health care system by controlling the flow of information. Internationally, this occurs explicitly through limitations on the advertising of pharmaceuticals and implicitly by restricting funding of research. While the new institute will have a role in "the dissemination of research findings with respect to the relative health outcomes, clinical effectiveness, and appropriateness of the medical treatments," a truly patient-centered approach would also focus on the patient's perspective.
There is little federally funded research focused on the patient's perspective. Knowing more about what patients think might have resulted in less of an uproar over the recent changes to breast cancer screening recommendations, for example.
It is unclear how the findings of the institute will we implemented. Similar institutes overseas cannot have their decisions challenged in court. In trying to be everything to everybody, the institute will need to make trade-offs that will most likely promote clinician-centered or payer-centered outcomes research - ignoring the disparate needs of patients.
House and Senate negotiators should create a separate institute for the scientific study of the patient's perspective, an "Institute of Patients' Needs and Wants," to conduct and fund real patient-centered outcomes research. Such an institute would not only provide necessary oversight, but more importantly, the input of the patient's perspective and participation in health care decisions, from start to finish.
John F. P. Bridges is an assistant professor in the Department of Health Policy and Research at the Johns Hopkins Bloomberg School of Public Health and a senior fellow at the Center for Medicine in the Public Interest. His e-mail is email@example.com.