Personal health records create a picture of health

Ensuring that vital medical information is available when and where it is needed
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Many veterinarians encourage their clients to maintain copies of veterinary records to ensure that animals receive appropriate care if they must be seen by someone else. The AVMA even recommends keeping copies of veterinary records as part of its family disaster preparedness planning guide.

It is advice that veterinarians should apply to their personal health records, as demonstrated by two recent cases reported in the Markle Foundation's Weekly Digest.

In the first, a California woman traveling on business in Philadelphia developed a severe pain in her abdomen and went to the emergency room. Results of a battery of cardiac tests were normal, so she requested copies of the reports and took them to her regular doctor. Wasting no time repeating tests already performed in Philadelphia, he instead ordered an ultrasound and CT scan. A malignant kidney tumor was found and surgically removed before the cancer could spread.

In the second case, an elderly woman with a history of heart disease complained of light-headedness. The woman's daughter printed out her mother's personal health record and gave it to the emergency room physician, who was then able to base treatment decisions on a detailed medical history, including information from the patient's most recent visit to her cardiologist.

Selecting a secure PHR

A personal health record, which is a comprehensive profile of an individual's health status, offers many benefits. A PHR can save time and money by reducing or eliminating the need for duplicate procedures and processes—such as repeated laboratory tests and radiographs—and by tracking insurance claims, deductibles, and benefits. A PHR can also facilitate health management by reminding patients about specific care instructions; providing detailed information on prescription medications, allergies, and vaccinations; and tracking appointments and progress toward specific health-related goals such as fitness or weight loss.

Personal health records can be as simple as paper files or as elaborate as computer programs and online services. Electronic formats are the most popular, as they are more efficient than paper, highly portable, and accessible from any computer. Unfortunately, they are also susceptible to privacy and security breeches, which can result in unauthorized access to sensitive health data and even identity theft.

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That is why it is critical that the selection process for an electronic PHR start with a close examination of the vendor's privacy and security policies, as well as the ability of the user to control access to the information in the PHR. It is also important to know the sources of data that are stored in the PHR—such as medical records from physicians, insurance claims data, or patient-provided information—and what rights those sources have over the information they provide.

A PHR "can become the richest, most detailed source of information about all things that affect your health, so there is absolutely no logic at all for anyone but the patient to control what goes in it and with whom it is shared," said Deborah Peel, MD, founder of the Patient Privacy Rights Foundation, a national watchdog organization for consumer health privacy.

Dr. Peel points to HealthVault, a free online service from Microsoft Corp., as an example of a PHR provider that has "set the absolute highest privacy bar in the industry."

In addition to letting patients control who can access the information saved within HealthVault, as well as for how long and to what extent, Microsoft prohibits the use of that data for any commercial purposes by anyone, even those to whom the patient has granted access.

The American Health Information Management Association, which launched as an information source on PHRs, and the American Medical Informatics Association jointly issued basic principles for PHR adoption to guide the selection process. One principle is that people should have control over how their PHR information is accessed, used, and disclosed, and that all secondary uses of data must be disclosed to the consumer, with an option to opt out, except as required by law.

Further, PHR products should meet security criteria consistent with the Health Insurance Portability and Accountability Act, and PHR providers must be accountable for unauthorized use or disclosure of personal health information, including immediate notification of any breeches that could lead to disclosure of information.

What to include

Once a PHR format is selected, it must be populated with enough information to maximize its potential to aid consumers in taking a proactive role in the management of their health care.

The AHIMA recommends that all PHRs contain information about personal identification, emergency contacts, and contacts for all health care and health insurance providers, as well as the following:

  • Notable illnesses and surgical procedures, including dates
  • Current medications and dosages
  • Vaccinations, including dates
  • Allergies or sensitivities to drugs or other materials, such as latex
  • Important events, dates, and hereditary conditions
  • Results from a recent physical examination
  • Opinions of specialists
  • Important test results, including ophthalmology/optometric and dental records
  • Correspondence between patient and providers

All PHRs should also include information on living wills, advance directives, medical power of attorney, organ donor authorization, and any other health-related information the patient wants to track—such as exercise regimens, herbal medications taken, or counseling received.

Taking control

Once it is populated with information, the PHR should be updated with every new health event. Also, while a trusted caregiver should know where the PHR is, access should be strictly limited.

The work involved in selecting and maintaining a PHR is worth the effort. A PHR empowers patients and gives them "more intimate knowledge of [their] health information, including an active role in preventive care and care management," notes AHIMA on