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Posted: June 15, 2006

Spousal Caregiving

The Personal Health Record: Don't Leave Home Without It!

Bill Andrew

Do you remember watching in horror as residents of the Gulf Coast fled their homes in the wake of Hurricane Katrina on August 29, 2005? Thousands escaped with their lives and not much else. This catastrophic event should be a solemn reminder of how quickly our lives can change.

The victims of this deadly hurricane, and its subsequent impact on their lives, lost so much more than their homes, personal possessions, and irreplaceable family treasures. They also lost crucial personal paperwork and, for many, their complete medical histories. In fact, many hospitals and physician offices lost most, if not all, of their patient medical records.

How do those, who have been affected by this personal tragedy, cope as they now have to start from "scratch" -- especially when it comes to their medical care? How many times have you sat in a doctor's office and repeated your loved one's medical history each and every visit? As family caregivers, we serve as the care coordinators for our loved ones -- keeping track of doctor visits, medications, tests and procedures, therapies, and other related medical issues. More than likely, the family caregiver is the source to which each healthcare provider turns for updates and progress reports regarding the loved one's condition.

With that in mind, I doubt if many of us walk around with our loved one's medical information in our pocket -- ready for use at a moment's notice. The personal files of our loved one are typically not kept at home or at work -- they are typically kept as the medical record for each and every encounter by the respective healthcare provider. We assume that they will always be there for us and will help us to recreate any information that is needed when it is needed.

Guess what -- "tain't so!" Thanks to Hurricane Katrina, we now know that provider medical records may be lost as well.

Ever since the September 11, 2001, terrorist attacks, we have been hearing about emergency preparedness. Now as we enter the 2006 hurricane season, we are once again told to be prepared. It shouldn't take a national disaster -- either man-made or nature-made -- to remind us to get our personal affairs in order, especially our personal medical affairs. Even if you do not live in an area that could be affected by a hurricane, you may encounter flooding, tornadoes, earthquakes, and other natural events that can affect both you and your loved one. We can take a proactive role in helping our loved one, and ourselves, by putting together a "personal health record" -- often called a PHR.

What is a PHR?

First, we need to define what a health (or medical) record is. Each time you or your loved one has an encounter in a physician's office, has a procedure done, or requires hospitalization, a health (or medical) record is created for that specific encounter, procedure, or hospitalization. Hereinafter, we will call that record the "electronic health record," or EHR, since that is the term that will be used by various government programs being developed. These records are maintained by the provider, although you have the right to obtain copies upon request (within HIPAA rules).

On the other hand, a "personal health record," or PHR, is maintained by the patient, his/her family, or his/her caregiver. It can include all of your loved one's various healthcare provider records as well as basic health information you and/or your loved one compile together. Most people think of the PHR as a compilation of provider records, but it is not that alone. It is a tailored set of health/medical information that the patient and the family caregiver play an active role in creating.

The American Health Information Management Association (AHIMA), a national non-profit professional association dedicated to the effective management of personal health information, defines a PHR as "A universally available, lifelong resource of health information needed by individuals to make health decisions. Individuals own and manage the information in the PHR, which comes from healthcare providers and the individual. The PHR is maintained in a secure and private environment, with the individual determining rights of access. The PHR is separate from, and does not replace, the legal record of any provider."

You can learn more about the PHR by going to a comprehensive website provided by AHIMA. This website also provides an extensive list of firms that provide PHR systems and support.

Caregiver Is the Key

You are the key to the PHR -- as an individual and as a family caregiver. Unlike the medical records that your loved one's doctors create, you can play an active role in the creation of, control over, and access to your loved one's PHR. Taking ownership of your personal health information not only will make your life easier during the next physician encounter or hospitalization, it will empower you to play a much more significant role in your loved one's healthcare.

Obviously, the PHR would prove of value to you and your loved one in an emergency situation, such as a hurricane or other disaster. But think about how many health/medical care providers you and your loved one sees on a regular basis. Each of these providers keeps their own specific set of medical records. This information is typically not shared between providers with the exception of multiple physicians in a multi-specialty clinic environment. Thus, each provider may not be aware of what the other has prescribed or recommended.

As the family caregiver, you are the single depository for all of these disparate pieces of health/medical information. Only you can ensure that all of the providers involved with your loved one's healthcare know what is going on -- the big picture.

Think how much easier the family caregiver role would be if all of the health/medical information for a loved one were available in one place – that’s the PHR! By having that information available in a form that makes it easier to share with various healthcare providers, you have something that is extremely valuable to them -- to your loved one -- and to yourself. You now become an integral part of the health/medical care team for your loved one.

The information you provide will help the provider do their job better since you will be providing it in a form that is readily usable. The physician benefits, your loved one benefits, and the family caregiver benefits. This is a "win/win" program for everybody! 

Refer to the winter 2006 issue of TAKE CARE!, the quarterly newsletter of the National Family Caregivers Association, for an in-depth story of the personal health record as it applies to family caregivers. Much of this column is based on that story. In fact, I would recommend this website for all family caregivers as an additional resource.

If you have developed a PHR for your loved one or yourself, perhaps you would share your experience with other readers of this column. If so, please e-mail me at


"Prayer is indeed good; but while calling on the gods,

a man should himself lend a hand."

Hippocrates (460-377 BC)





Bill Andrew identifies himself as a former “nutritionally-empowered Alzheimer’s caregiver” who attributes the slow-down in progression of Alzheimer’s disease in his wife, Carol – and the growth of his own personal emotional, mental, physical, and spiritual capability and strength to provide quality 24/7 care for her in their own home – to the targeted nutritional supplements they both took on a daily basis. Carol went to her Heavenly reward on June 9, 2008 – Bill continues on to advocate for family caregivers. Contact Bill with your caregiving questions and comments via email at

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© 2006 Pederson Publishing, Inc. All Rights Reserved.
Commercial use, redistribution or other forms of reuse of this information is strictly prohibited without the prior written permission of Pederson Publishing.

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