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Prepared Patient: Taking Charge of Your Health Records


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Prepared Patient Publication LogoWritten By: Becky Ham, Science Writer
Prepared Patient, is created by the Health Behavior News Service (HBNS), part of the Center for Advancing Health. This monthly series helps Americans participate more fully in their health and health care. For more issues of the Prepared Patient series, visit the archives here.

File folders, marching across the shelves in an orderly line behind the receptionist's desk, may be the first thing you see when you sign in for a doctor's appointment. While it's tempting to believe that your personal health history is neatly contained within one of those folders, the truth is far more troubling.

Paperwork from every doctor visit, every lab test, every hospital stay, and every prescription refill'the essential pieces of information that can keep you healthy and in some cases avert a major medical mistake'is scattered in cabinets and computers across the country. Although various proposals to overhaul the U.S. health care system would create a standard, electronic database of medical records for all physicians, such a system is still decades in the making. Currently only about 17 percent of U.S. physicians are using computerized patient records, according to a recent survey published in the New England Journal of Medicine.

It's not a matter of convenience that makes this messy situation a problem. A patient with a splintered health record is at greater risk of drug interactions or overdoses, and may miss out on critical preventive care or lab test results. For patients with chronic conditions, an incomplete record can make it more difficult to detect the gradual signs that the condition is growing worse or is no longer responding to treatment. Without a complete health record for reference, physicians may order duplicative and unnecessary tests that could delay care. And of course, patients may face maddening and costly roadblocks with insurance coverage and payment without complete records at the ready.


Personal Health
Records Online

To the alphabet soup of health care, add these two terms: EHR/EMR and PHR. An electronic health/medical record (EHR or EMR) is simply the electronic version of your medical records at your doctor's office or hospital. A personal health record (PHR) is your medical record that you create and control, whether it's paper or electronic.Increasingly, patients are turning to online services such as Google Health ( or Microsoft HealthVault ( to create electronic PHRs. These new online PHRs may interact with and draw information from EHRs created by physicians, medical labs, insurance companies, pharmacies, and health information Web sites. Many experts predict that someday these electronic PHRs will form the backbone of a fully connected and computerized health care system on a national level.The links below offer more information about electronic PHRs:
American Health Information Management Association
Medicare Personal Health Record Overview
National Institutes of Health'??s MyMedicationList
AHIMA video on benefits of a PHR
(also: search '??personal health record'?? on YouTube)

There's no 'master' file where all of this personal health information comes together and travels with you'unless you create that file yourself.

Patients should build these personal health records with a few goals in mind: Are you simply trying to keep the basic facts in one place so that filling out forms in the waiting room is a snap? Do you need to keep detailed records of your medication and therapy to treat a chronic condition? Are you undergoing treatment for a complicated condition that will require extensive documentation for your insurance company? The answers will shape the kind of health recordkeeping that you undertake.


What's in the Record?

A personal health record can be as spare or elaborate as a person chooses. But experts agree on a few basic items that every organized health record should have: (1) the names and phone numbers of your health care providers, (2) your insurance identification, policy number and phone number, (3) emergency contact numbers, (4) a list of your medications (including any over-the-counter drugs or supplements), (5) any allergies and (6) a list of your most recent surgeries or hospitalizations.

'I think the most important thing to have is the list of your current medications, including the dosage and why you're taking it,' said Marsha Dolan, MBA, an associate professor of nursing and coordinator of the Health Information Technology Program at Missouri Western State University. 'If a doctor sees you're taking a certain medication for a certain disease, it might alert your caregivers to something else they should be aware of when treating you.'

When Barbara March's husband had heart surgery, 'I just made a little one-page history of his important hospitalizations and the dates, a list of his doctors and his medications,' said the Missouri resident. 'I couldn't pronounce half the stuff he took, or how many milligrams; so it was either carry a list with me or carry all the bottles or prescription papers.'


Beyond the basics, a personal health record can include anything from immunization records, lab results, X-ray films, notes from doctor's visits, and even advance directive papers. A brief family medical history, 'especially for those with chronic conditions such as diabetes and heart disease,' can be useful to include as a reminder to discuss the history with your doctors, Dolan said.

The blizzard of paperwork that descended upon Montessori school directors Lillian Shah and Laura Messinger as they cared for their terminally ill sisters and mothers convinced the two to write a guide to keeping health records. Their book, Keeping Healthy by Keeping Track, contains a variety of charts to record everything from immunizations to insurance premiums. But patients shouldn't feel obligated to collect and chart every detail of their health care, Shah stressed. 'People can start off simply, with just a three-ring binder, and create sections of information that are important to you,' she said.


Tracking, Storing Your Medical Information

Under the 1996 HIPAA law, patients have a right to obtain copies of all personal medical information from their providers, but 'it's not an automatic thing, you have to ask for it straightforwardly,' Shah said. In most cases, you can ask the receptionist at a doctor's office to make copies of your records or lab results, but be prepared to pay for the copies.

In the hospital, it can be more difficult to find someone willing to track down your information. Hospital patient navigators or advocates can sometimes obtain copies for a patient still in the hospital, while the records department is more likely to make copies for patients after they have been discharged.

There are pros and cons to keeping health records in a paper or an electronic format. Electronic records can be easily updated, but some older patients may find them less familiar to read, and some physicians may not have the access to or time to read a patient's electronic files. With a paper record, patients may find it easier to control which items they share with their doctors. Travelers may also find that a paper record is easier to carry, although some keep their records on portable flash drives.

If a consumer is signing up for any Internet or Web-based personal health record, they should carefully check out the organization sponsoring the online record and the privacy protections that they guarantee.

Using Your Records

Once your records are in place, they should become an active part of your care. You should use your record as a way to collect, double-check and complement the information you receive from your physician. At the very least, your records can help you speed through waiting room forms. But they can also prompt important conversations with your physicians. If your doctor writes a new prescription, you can use your current medication list to ask about any interactions with the new drug. Or if your records suggest it's time for a colonoscopy, you might make time to discuss the pros and cons of the procedure.

Shah uses her records as a reminder of the topics she discussed with her doctor at the last visit and the questions she wants answered at the next visit. 'The average appointment is a seven-minute visit, so it's really smart to be proactive about it,' she suggested.

Don't assume that your doctor can'or will want to'access your online health records, or even keep your copies of your personal health record as part of their office records. Physicians can be legally responsible for anything contained in their own files, and may not want take a chance that your information is faulty or incomplete.

For the most part, doctors are receptive to patients who keep detailed health records, as long as the patients don't bring hundreds of pages to an appointment. Geriatrician James Cooper advises patients not to overwhelm providers with giant tomes of their medical history because 'information overload obscures important items.' He adds that physicians are not reimbursed for time spent going over patients' old medical records.

But as March and Shah discovered in their families, thorough health records can also be a gift to caregivers. 'The time will come when you must turn it over to someone else, and wouldn't it be wonderful if you can turn it over to someone in good shape?' Shah said.

Having your health record at the ready can remind you that 'you are the leading expert on your body,' as you participate with your physician in your care, Shah noted. 'If you... bring that confidence and ease to the relationship, so that you're his partner and number-one helper, that's really important,' he said.

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The Health Behavior News Service (HBNS), a division of the Center for Advancing Health, brings you the latest health behavior and patient engagement research from selected peer-reviewed journals. HBNS original stories summarize research findings including “Key Points” and are disseminated for free to the press and the public around the world.

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