How cool is that?: the Personal Health Record

The administrative director of Patient Always First has an 88-year-old father who lives in another state. After a lengthy hospital stay about a year and a half ago, he returned to his home but was no longer able to live alone. Different aides come in to help him as well as a physical therapist who comes to see and work with him twice a week.

Before Betsy used the PatientAlways First Health Record (PFHR), she would ask her dad, “are you taking your medicines?” and he would always say “yes.” His aide would also say “yes, I give him what he needs.”

She decided to start a PFHR for him. She called his pharmacist and got a list of his medicines, and then she called her father’s doctor, and asked if these medicines were the ones he should be taking. (She faxed the list to the doctor’s office.)

(Doctors would be glad to check a list of medicines like this because, obviously, they want you on the medicines that they want you on.)

So imagine her surprise when she learned that her father was still taking several medicines that the doctor had discontinued and replaced with different prescriptions. The doctor had no way of knowing that his patient was still taking the old medications as well as the new ones. (A real-life scenario of “medications: just plain mix-ups.”) The pharmacy continued to fill all the re-ordered prescriptions, old and new, and because so many different people were coming to the house to help, the aides weren’t exactly sure what he was supposed to be taking. The doctor was able to recognize the errors and cross out the medications that were no longer to be given.

Betsy then put her dad’s correct medications into the PFHR, and added his diagnoses, allergies, important contacts, etc. as she remembered them and as she asked him to recall. She printed out a copy of the PFHR and it sits on top of the medicine box so that anyone coming in to help can just look at the list and know what medicines to give.

(Remember, just do it. From your memory, it’s going to be better than what your doctor has had time to organize.)

Then, since the PFHR has this really neat feature where you can let other people access the record, or add to it (only with your permission), she allowed the physical therapist who visits her dad to have access to add to the record. So now, when the physical therapist comes, he types the date, vital signs, and other information about her dad’s treatment and condition that day into the record. And Betsy can see all that information when she logs on.

So Betsy can have some peace about helping her father long-distance like this- she really is checking in and helping with his health.

And if her dad should need to go to the emergency room again, then his aide could bring the printed-out PFHR, or Betsy could fax it to the ER, or the ER could even access it online themselves (if Betsy or her father gives them the username and password.)

Now, how cool is that?

Advice to Sandwich Generation women who are caring for a distant parent: Get a personal health record for them.

Read another personal health record story, or read Dr. Oliver’s blog.

Thanks to Dr. Cari Oliver for her permission to reprint this story from her book, “Cautious Care: A Guide for Patients.”

The patient makes barking noises when excited: Google's Personal Health Record

I did a sneaky test of Google's new personal health record, since I was wondering whether they would keep my personal health record confidential.

I filled out a completely truthful profile for a member of our family: a 6-year-old male weighing 35 pounds, who has a whistling heart murmur but is otherwise in excellent health, as he runs daily. The patient is excitable, and makes barking noises when excited or agitated – as dogs often do.

I haven't received any spam or junk mail in his name since entering his profile two months ago. This may mean Google is serious about keeping medical information private…at least for now.

Advice: Consider using a personal health record to track your family's treatments, immunizations, and upcoming appointments.

Now they take pictures at Disneyland, not to Disneyland: Personal Health Record

Aaron Walbert is a teenager living in Colorado Springs, an hour and a half from his doctors. He has vacationed in northern Minnesota and in Disneyworld. He can use a computer like most members of his generation.

He has an exceptional past: in his fourth day of life, he suffered a stroke, and developed hydrocephalus. Since then, he has undergone numerous operations to drain the excess cerebrospinal fluid, via a shunt. While on vacation several years ago in northern Minnesota, he began complaining of headaches and nausea, making his mother worry that his shunt had malfunctioned. At the hospital in Duluth, two hours away, no one could retrieve his chart from his Colorado hospital. He had to drive 3.5 hours away to another hospital so a neurosurgeon could determine whether surgery was needed. Over time, his mother has realized there are many false alarms, because everything from the flu to a poor night’s sleep can mimic the failure of a shunt. Even so, she began to lug around the large, heavy envelopes of radiology films wherever they went, out of concern that the shunt could fail at any time.

But this hasn’t been necessary for the last two years. The Walberts acquired an electronic personal health record (PHR), so they could access his health records anywhere. If Aaron gets sick far from home, doctors at the nearest hospital can download his latest MRI scan for comparison. And they could have anything else in his medical record at their fingertips. That was helpful two years ago, when Aaron got sick at home. Mom took him to a local radiology office for a brain scan, and had it compared to the most recent scan, available online via the PHR. When the doctor realized the scan was unchanged, Mom could bring him home without worry, without making the long drive to his hospital.

Advice to rural families with complex medical needs: Get a Personal Health Record. Having your up-to-date medical information on hand anywhere can be a godsend.

Read a story of how a wife’s medical information on her husband saved him, or read Dr. Orly Avitzur’s story in Neurology Now.