Enhanced Privacy, Improved Health through Research: In Today’s World, Does the HIPAA Privacy Rule Do Enough to Ensure Both?

Tim WelchBy Tim Welch

In February 2009, the Institute of Medicine (IOM) released a report, "Beyond the HIPAA Privacy Rule:  Enhancing Privacy, Improving Health Through Research," which outlines the IOM's evaluation of the effectiveness of the 1996 Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule in the context of today's electronically-intertwined world.  The report, by the IOM's Committee on Health Research and the Privacy of Health Information, assessed the impact of the HIPAA Privacy Rule on health research in the United States and made recommendations to encourage health research while preserving and improving the privacy protection of personally identifiable health information.

Every American doctor's office contains endless rows of file cabinets which house the confidential medical records of the office's patients.  Modern technology offers us the time- and space-saving convenience of storing, organizing, accessing, and transmitting these records electronically.  However, such a free flow of information—in a less-tangible and more easily-shared form than classic paper records—raises privacy and security concerns.  Medical records often contain personally identifiable information that could be damaging to a patient's dignity and lead to discrimination in other aspects of a patient's life.

According to the IOM Committee's report, the HIPAA Privacy Rule—which calls for a set of federal standards for protecting the privacy of personally identifiable health information—is not as effective in today's world as it should be.  The IOM reports that the provisions of the HIPAA Privacy Rule are frequently misinterpreted and lack clarity.  Consequently, the Committee recommends that national policy makers develop a new approach to ensuring privacy in health research, via a new rule or a revision of the HIPAA Privacy Rule.  

The IOM is trying to achieve the ultimate goal of improving public health through research, while also protecting privacy rights of human test subjects, whose private medical information can easily be shared, distributed, or stolen electronically.

According to the IOM Committee's report, the HIPAA Privacy Rule impedes health research as currently implemented.  The IOM Committee argues that the use of medical records in health research is crucial to developing new therapies and diagnostics and to identifying adverse side effects of current treatments and regimens, so it is imperative that records be available to researchers.  But the Committee concedes that patients' privacy rights must also be protected.

The IOM Committee recommends that national policy makers revise the HIPAA Privacy Act.  The Committee notes that different local ethical review boards might interpret the HIPAA Privacy Act in a nonuniform manner.  The IOM Committee fears that existing databases of patient information and biospecimens might be being used "ineffectively."  Since the public's willingness to authorize use of private health information for research purposes could be positively affected by its awareness and understanding of research findings, the IOM Committee also advocates that a high priority should be improving the accessibility of health research findings for all Americans.

Electronic health records will continue to be adopted more widely in the coming years.  Medical advances depend on effective health research.  In many cases, effective health research depends on access to private health information of individuals.  However, an individual has a right to keep private certain health information that can identify him or her and can damage other aspects of his or her life.  Not given sufficient weight in the IOM Committee's report is that individuals also have the right to choose which research they will participate in.  Some people may have religious or moral objections to certain types of research.  They may not wish to participate in research regardless of whether their name is associated with their personal medical information.  Thus, with respect to the greater goal of improving the nation's health, enhanced privacy and improved research are inevitably connected.  But so is the right for people to choose what will or will not happen to them, even when the "them" is their personal medical information.

6 thoughts on “Enhanced Privacy, Improved Health through Research: In Today’s World, Does the HIPAA Privacy Rule Do Enough to Ensure Both?

  1. I am a doctor, work in South America. I am a surgeon in large hospital. The information on my patients, case records, inquiries – all this is stored on a paper. And, it is possible for any person to use it in the purposes. Any person if will want, very simply can take hold of any case record. We have also electronic data carriers. But here the same.
    Any person can receive access. If will want. I am, as the doctor, cannot present myself the carrier which reliably would store in itself the information on patients.
    Because in present time anyone can get that he wants.

  2. There is a growing concern that information is not being used as effectively as possible in health care. Recent reports from the Institute of Medicine have reviewed research findings related to information use and expressed concerns about medical errors and patient safety, the quality of medical records, and the protection of patient privacy and confidentiality.

  3. Electronic health records will continue to be adopted more widely in the coming years. Medical advances depend on effective health research.

  4. Using an EMR software system does not have to reveal a patients entire medical history to anyone that wants to see it. It must be secured with a username and password so that it is less accessible and in cases where some the electronic medical records were used questionably it will be possible to trace who had access to the records.

  5. In my opinion no, they do not do enough. But then again I wish Paul Revere would ride again. We need to ensure that our right to privacy is not interfered with with all of the jobs in medical field and the people who only watch out for themselves and not the patient.

  6. It’s great to hear the medical world continually striving for better health care. Insurance health plans in the market have improved along with research and government aid.

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