By blocking a health plan's or disease management provider's ability to reach these patients, patient privacy proposals will trap the chronically ill like dolphins in a tuna net. Our industry is only now beginning to realize the power of technology for turning raw data into actionable information that can potentially improve the lives of millions of individuals. While some legislation is required to prevent inappropriate use of data, a sweeping measure that limits access to data for disease management initiatives will be a step backwards for patients, physicians, health care organizations and our society as a whole. The irony is that, by virtue of its emphasis in the early 1990's on reform and cost effectiveness, the federal government was largely responsible for spawning this surge in improving the health system and now the government may become responsible for suffocating this progress. Our legislators must approach this important issue with continued thoughtfulness and a clear objective of protecting patient rights while avoiding collateral damage to the real progress made towards a reformed and more responsive American health care system.
Information can be an issue of life or death.
By limiting access to patient information, doctors, hospitals, health plans and researchers would be unable to provide the high standard of care Americans deserve. Proposed confidentiality legislation will have devastating consequences for patient health, says Richard Vance, vice president of Population Health for Humana, a managed care company in Louisville. It puts into jeopardy all the tools that modern medical science and health services research use to improve health, reduce the burden of illnesses and avoid catastrophic complications of disease. A new breast cancer exam, PathVysion HER-2 DNA Probe Kit, recently approved by the FDA provides clinicians with a cutting edge tool for obtaining the most accurate information with which to make critical decisions toward more precise therapy, says Dennis Slamon, director of the division of hematology and oncology at UCLA's School of Medicine. The clinician can then easily determine whether or not the HER-2 gene, which is responsible for nearly 30 percent of an aggressive form of breast cancer, has made additional copies of itself.