Improving America’s Health Care System
A few years ago, I was diagnosed with Dupuytren’s disease (DD). In advanced cases, thickened tissue beneath the skin can pull one or more fingers toward the palm, producing Dupuytren’s contracture and preventing the hand from opening fully.
One treatment for active, early-stage DD is low-dose radiation therapy. A commonly used regimen delivers a total dose of 30 gray (Gy) to the affected area. Some studies suggest that this treatment can slow or halt progression and occasionally reduce early nodules or symptoms. It generally cannot reverse an established contracture, however, and the available evidence is limited.
While discussing the treatment with my radiation oncologist, I asked whether both hands could be treated even though only one showed signs of DD. The disease frequently affects both hands, although published estimates of bilateral involvement vary considerably. I wondered whether treating my apparently unaffected hand might delay or prevent the disease from developing there.
My physician agreed to my request. At the time, I understood that no radiation-induced cancers had been reported in the published DD studies. That finding was reassuring, but it did not mean that the treatment was entirely without risk. The long-term evidence is incomplete, and radiation can produce skin changes and carries at least a theoretical risk of inducing cancer. More importantly, there is currently no reliable evidence that irradiating a hand with no detectable disease prevents DD. The idea should therefore be regarded as a research question—not an established treatment.
I asked my physician how a controlled study of preventive treatment could be proposed and how the idea could be brought to the attention of other physicians who use radiation therapy for DD. She knew of no simple, formal pathway through which an individual patient or practicing physician could submit such an idea for national evaluation and dissemination. She said she would discuss it informally with professional colleagues. The United States does have mechanisms for advancing medical knowledge. Researchers can seek funding from the National Institutes of Health, register clinical trials, publish findings in medical journals, and work through organizations such as the Agency for Healthcare Research and Quality, the Food and Drug Administration, medical specialty societies, universities, and healthcare systems. Nevertheless, responsibility for identifying, evaluating, and distributing new clinical practices is divided among numerous public and private organizations. There is no single, comprehensive national system that routinely receives promising clinical ideas, determines whether they merit study, evaluates the resulting evidence, and rapidly communicates validated advances to every physician who should know about them.
This fragmentation can delay the adoption of beneficial practices and allow ineffective or inadequately studied treatments to spread. It also places an unreasonable burden on physicians, who must attempt to keep pace with an enormous and constantly expanding body of medical literature. The result can be inconsistent care, avoidable patient harm, regional differences in treatment, and increased legal exposure.
Scotland offers a useful model. Healthcare Improvement Scotland is the national authority responsible for evidence-based advice, guidance, and standards for health and care. The Scottish Intercollegiate Guidelines Network develops and disseminates national evidence-based clinical guidelines. The Scottish Health Technologies Group evaluates nonpharmaceutical health technologies, while the Scottish Medicines Consortium assesses newly licensed medicines. Together, these organizations provide coordinated recommendations to NHS Scotland and its regional health boards. Scotland’s system is not perfect, but it establishes clear national channels for evaluating evidence and sharing reliable recommendations.
The United States should establish a similarly coordinated National Clinical Evidence and Implementation System, preferably by expanding and strengthening the Agency for Healthcare Research and Quality. The system should:
Provide a public portal through which physicians, researchers, patients, and healthcare organizations can submit promising clinical observations and research questions.
Screen submissions to determine whether existing evidence is sufficient, a systematic review is needed, or a controlled study should be considered.
Refer high-priority research questions to the NIH, academic medical centers, practice-based research networks, or other qualified organizations.
Coordinate evidence reviews with the FDA, Centers for Medicare & Medicaid Services, Centers for Disease Control and Prevention, medical specialty societies, and patient organizations.
Determine when the evidence supports a national clinical guideline, when a treatment should remain investigational, and when additional research is required.
Disseminate validated recommendations through medical societies, licensing boards, continuing-medical-education programs, insurers, and electronic health-record decision-support systems.
Maintain a single, searchable national database containing current clinical recommendations, the strength of the supporting evidence, unresolved research questions, and notices when recommendations change.
Monitor patient outcomes after new practices are adopted and revise recommendations as additional evidence becomes available.
Provide appropriate legal protections for clinicians who follow current, authoritative, evidence-based guidelines while preserving accountability for negligent care.
The purpose would not be to dictate every medical decision or prevent physicians from exercising professional judgment. It would be to give clinicians and patients a reliable national source for determining what treatments are supported by evidence, what treatments remain uncertain, and what promising ideas deserve further study.
A medical idea should not depend solely on whether one physician happens to mention it informally to several colleagues. Promising ideas need an accessible route from clinical observation to rigorous research—and, if proven safe and effective, from research to widespread clinical practice. A coordinated national system could accelerate worthwhile medical advances, discourage unsupported treatments, reduce unnecessary variations in care, and improve outcomes for patients throughout the United States.