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Electronic Personal Health Records Raise Privacy Concerns

Apr 18, 2008 | Parker Waichman LLP

A controversial issue has been raised by researchers writing in the International Journal of Healthcare Technology and Management. The issue revolves around electronic personal health records (PHRs), which could be used, among other things, to reduce medical errors.  But the advent of electronic PHRs raise questions about the ownership of patients’ medical test results and personal health information and how such ownership affects privacy,  personal liberties and freedom of information.

The journal article presents a research model for PHRs.  PHRs are being developed in the US as part of the Institute of Medicine's goal to improve healthcare quality, to make healthcare more patient-centered, and to enable patients to maintain increased control of their healthcare information via patient.  A PHR will be an electronic, lifelong resource that contains each person’s unique health information.  Only the patient and authorized healthcare workers can access the PHR at any time for the purpose of enabling appropriate healthcare decisions. The PHR is an important aspect of the US National Health Information Network (NHIN) which is working to provide all Americans access to their electronic health records by the year 2014.  There is not a lot of research being conducted on how PHRs compare with other types of medical records or how privacy concerns over PHRs are to be addressed.

PHR data would ideally include a patient's immunizations, allergies, and adverse drug reactions; medications and herbal remedies taken; past and present illnesses and hospitalizations; surgeries and other procedures; laboratory test results; and family history.  The PHR could also contain other information such as living wills and advance directives; organ donor authorization; recent physical examination data; healthcare workers' opinions; other test results; eye and dental records; permission and consent forms; and lifestyle information, such as details of smoking, drinking, drug use, exercise, and even diet.

According to Melinda Whetstone and Ebrahim Randeree of the College of Information, at Florida State University, Tallahassee employers, insurance companies, healthcare providers, and independent entities are receiving increasing access to PHRs.  What remains a bit confusing is if the PHR, and other types of electronic records—Electronic Medical Record (EMR) and Electronic Health Record (EHR)—have been used and implemented and how successful such use has been.  The Tallahassee team suggests individuals will own and manage PHR information.

The Institute of Medicine estimates that nearly 100,000 deaths occur each year due to preventable mistakes.  Because of this, one of the goals in using the PHR is to reduce the chances of medical errors caused by overuse, under use, or misuse of a patient's medical data.  But—according to the researchers—from the patient’s perspective, PHRs must provide benefits that outweigh trust and privacy issues.

Although concerns over patient privacy remain and freedom of information are tricky and remain under-researched and unresolved, proponents of the technology argue that the benefits of an online PHR system could be beneficial.  Some benefits include allowing access to a comprehensive personal health history that can be used by healthcare workers.  Patients could be better equipped to be their own health advocate with benchmark indicators and maintenance prompts, such as information on when specific testing or exams are required or should be scheduled.


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