Cathy Barnes of Bakersfield was traveling on business in Philadelphia a few years ago when she developed a terrible pain in her abdomen. Doctors at a major medical center there kept her overnight and carried out a battery of tests on her heart. The tests came up negative.
When she got home, Barnes went to her regular doctor, and an ultrasound exam found a mass in her kidney. A CT scan showed a kidney tumor, and she was immediately scheduled for surgery to remove it before the cancer spread.
Barnes believes she saved precious time in her treatment because she knew enough to ask for a copy of her medical records from the Philadelphia hospital and show them to her doctor at home -- eliminating the need to repeat all those tests. "Having copies of my cardiac tests saved all that time," she says.
Barnes, a database specialist, is unusual -- long before the tumor, she'd gotten in the habit of asking for copies of her records and meticulously tracking her vital signs on a spreadsheet to share with her doctor, who monitors her high blood pressure.
Although not every doctor would want that much detail, nor does every patient have the patience to accrue it, most people could benefit from routinely asking for a copy of their lab results and doctor's reports, says David Lansky, senior director of the health program for the Markle Foundation, a nonprofit that promotes application of technology to health problems.
Such a personal health record, kept either on paper or electronically, can help patients stay aware of their health, particularly if they have a chronic illness such as diabetes or hypertension. It can help a person weed out mistakes in the information, avoid unnecessary repeats of tests and ease the move to a new town or doctor's office.
And anyone who takes care of another person, such as an elderly relative or child with a health problem, can use the records to help advocate for the patient.
Health insurers such as Aetna have helped drive this trend in hopes that patients would pay closer attention to their health. They were among the first to offer some online access to medical claims. Kaiser Permanente -- unique in being an insurance company and a healthcare provider -- is probably the furthest along, offering members not only access to an abbreviated version of their medical records but other services too, such as the ability to e-mail physicians and set up appointments online.
Companies such as Wal-Mart are starting to offer their employees the option of saving personal health records as well.
Many people don't have such access, however -- and there's a downside, in any case, to using an online personal health record provided by an employer or insurer, even though it's free: If you leave that job, you may not be able to maintain access to the site. So people wanting a more detailed record may seek out a solution on their own, and today, they have a wide array of options.
Over the last few years, dozens of personal health record models have hit the market. Some include software that allows people to track their health on their own computers at home or to put it on a thumb drive to give to a doctor. Others are based online, using a secure server that a patient, or a relative or doctor with permission, can sign on to from any Internet-connected computer.
Before taking the time to type a lot of personal history into a product, consumers should think a bit about what they want from a personal health record.
They should also think about how private their records will remain.
With at least 200 personal health record products on the market, there's a wide array of designs. Many of them simply allow the user to fill in information by answering questions, such as: What chronic illnesses do you have? What medications are you on? What are the doses? Do you have any allergies to medications or other things?
Others are focused more specifically on people with a particular chronic illness or an interest in making a particular behavior change, such as diet or exercise. These would allow the user to regularly fill in information such as a blood pressure reading or number of minutes walking that day. Some products allow you to plug in an electronic device and download the information. Most sell for less than $50 or involve a small monthly fee.
HealthFrame, for example, is a $40 software product that allows the user to insert information on medical history, expenses, charts on tabbed pages. It has a calendar to track appointments, a format that can be shared with some doctors' electronic systems and a sync for an iPod to keep key medical information with you so it can be accessed in an emergency ( www.recordsforliving.com/ HealthFrame).