PHRs are proliferating, and for good reason. They help patients take charge of their health. By Robert Lowes Senior Editor of Medical Economics Magazine. www.memag.com

Maurice Perreault of Bellingham, WA took 12 medications for conditions that included diabetes, congestive heart failure, renal failure, and hypertension.

"God forbid if he had dropped his pill box on the floor," says his daughter Bonnie Parten.

Together with her mother and four siblings, Paten helped manage her father's care until he died in 2004 at age 80. A dozen different pills is a lot to remember, but family members made sure that every doctor treating Perreault knew exactly what he was taking, thanks to an online health record that they maintained for him and shared with clinicians.

"I think it extended my father's life because we avoided medication errors," says Parten.

Perreault's experience was partly what President Bush had in mind when he declared in 2004 that every American should have an electronic personal health record (PHR) within 10 years. The PHR is one element of the federal government's grand vision of a national health information network linking doctor's, hospitals, and patients.

Momentum towards Bush's PHR goal is definitely building. Sixty percent of American's favor creating online PHRs provided that their understandable concerns about security are addressed, according to a survey released last October by the Markle Foundation. CMS wants to promote PHR usage by Medicare and Medicaid patients. And Hurricane Katrina, which destroyed untold thousands of paper records, gave given the movement an added sense of urgency.

PHRs mix and match consumer, doctor input. Several types of PHRs are emerging. One kind is a record like Perreault's that patients and care takers built themselves. Just last year, a physician-patient communication service called Medem launched a consumer-created PHR called the iHealthRecord and it already had 40,000 users. Most of these PHRs are linked to Medem-built physicians websites that allow doctors to communicate online with patients.

IBM recently announced that it'll create a similar PHR for each of its 100,000 employees, but with a twist. Besides information that employees key in, the PHR will contain clinical information such as lab data from insurers and medication list from IBM's pharmacy benefit manager.

Another version of the PHR relieved patients of the burden of data entry. They can view information about themselves that's extracted from their doctor's electronic health record and presented in layperson-friendly fashion on a website. Some 100,000 patients of Group Health Cooperative, a nonprofit healthcare system based in Seattle, have signed up for this kind of PHR. The site also lets them send secure messages to their doctors. Such interactive tools, along with links to patients education, are becoming standard features of PHRs.

For even more variety, traditional insurers such as Blue Cross and Blue Shield of Louisiana and Empire Blue Cross Blue Shield are beginning to create online PHRs for their insured. Like the PHR at IBM, these contain clinical data derived from claims.

It's obvious that the world of PHRs is a young world, full of piecemeal experiments and questions that are unlikely to be answered soon: Will the average patient faithfully and accurately maintain a do-it-yourself PHR? And will doctors bother reading these PHRs? If they don't, it's feared that overlooking red-flag medical symptoms could increase their malpractice liability.

PHRs extracted from a doctor's EHR raise another set of questions: Will a patient be able to understand what he reads? How does a physician decide what potion of an EHR to share with the patient? How does information from another doctor get into PHR? What happens if the patient changes doctor? How will his health information be transferred?

Not surprisingly, the subject of PHRs worried some doctors, says David Lansky, senior director of the Markle Foundation's health care program. "They're not opposed to PHRs, but they anticipate challenges."

The ultimate goal, of course, is a single PHR that follows a patient throughout his life and reflects the care he's received from any doctor or hospital, since their EHRs would hook up to the PHR.

This cyber-Nirvana is years away. But, as the story of Maurice Perreault suggest, PHRs have enough of a track record to give us an inkling of how they impact medical care. To illustrate, we interviewed several patients who have PHRs and their doctors.

Pam likes the convenience of online data and services. When Pam Mullen, a retired teacher and graphic designer in Kirkland, WA, has a lab test, she doesn't wait for a phone call or a letter for the results. Instead, she logs on to a PHR available through her primary care doctor, internist John Kaschko with Group Health Cooperative. Not only does she see the results in a jiffy, but she also can go to the website and look up what they numbers mean. "I really enjoy the ability to do that," says Mullen.

She also values the convenience of shooting Kaschko an occasional question or requesting an appointment online. "It's less time on the phone," she says. "I don't like being put on hold."

The convenience factor is doubles, since Mullen has permission to log onto the PHR of her 85-year-old mother. "I can scan her medication list and figure out if she's due for a refill." Mullen's PHR gives her controlled access to a portion of the information in the Epic EHR that Kaschko and other Group Health doctors utilize. Kaschko estimates that approximately 35 percent of this patients use their PHR, and that the accuracy of the date improves in the process. "Patients will tell me that a drug allergy listed there is incorrect, or that a drug allery needs to be added."

More importantly, patients like Mullen tend to pose more sophisticated questions, says Kaschko. "Instead of asking if their last test was good or bad, they want to know a number." he says. "And if they number is abnormal, they wonder if a change in behavior - like a new diet - may have been the cause.

"So, they're thinking more about their health, and ultimately that's good. The PHR creates more of a partnership between doctors and patients."

A Katrina-proof record means a lot to Joyce. Living in New Port Richey, FL, Joyce Berry has some very pointed reasons why her iHealthRecord makes more sense than the file folder of medical records she used to maintain.

"We have a lot of hurricanes in Florida," says Berry, a retired nurse and hospital executive. "It's be very easy to lose everything in our house, including what's in my file cabinet. With the iHealthRecord, I don't have to worry about a natural disaster."

Florida also was the scene of the Terri Schiavo case, which highlighted end-of-life issues. Berry takes comfort in the fact that her iHealthRecord indicates that she signed both a living will and a medical power of attorney. It also discloses the location of both documents.

Berry created her iHealthRecord a year ago on the website of an anesthesiologist Lynne Columbus in Palm Harbor, FL, a pain management specialist. It took Berry approximately 30 minutes to fill in all the blanks about insurance coverage, medications, diagnoses, surgical history, emergency contacts, and so on. Berry reviews and updates the information every few months. In addition, she takes advantage of Columbus' interactive Medem website to request prescription refills, ask questions, and read articles about coping with chronic back pain.

Maintaining the iHealthRecord, says Berry, has made her a more responsible patient. It reminded her, for example, that she needed to ask Columbus whether an over-the-counter medication conflicted with her prescription drugs. Happily, it didn't.

Columbus says roughly 200 of her patients use the secure message tools on her website, and another 60 have created iHealthRecords. The combination of the two will especially benefit her snowbird patients when they're hundreds of miles away. They can give out-of-state doctors access to their records while continuing to correspond with Columbus. "The ability to send messages makes them feel as if they're in constant touch with me," she says.

Columbus doesn't review the information in her patients' iHealthRecords as much as she'd like, but that could change. She's talking to computer experts about integrating the iHealthRecord with her SOAPware EHR program. The would allow patient-entered information to flow directly into SOAPware - provided she edits it for accuracy.

Maurice and his family welcomed the education. Before he died, Maurice Perreault relied on a PHR dubbed the Shared Care Plan. Unique to Whatcom County, WA and a forerunner to the iHealthRecord, the Shared Care Plan was created, by a coalition that included local doctors and St. Joseph Hospital in Bellingham, part of the local PeaceHealth system. Initial funding came from a national program of the Robert Wood Johnson Foundation called Pursuing Perfection. Besides entering data on their own, patients can import medication, allergic reaction, and immunization information from the EHR of PeaceHealth as well as authorize their clinicians to make contributions.

Although Perreault's record was online, he and his family typically handed printouts to the doctors who treated him. "We thought they would use the online version, but it's not part of their work pattern, and many don't have computers in the exam room," says RN Nancy Stothart, an employee of the local Pursuing Perfection project that helped coordinate Perreault's care.

His doctors would update their own charts with the information in the Shared Care Plan. That proved immensely helpful, says FP Vermont McAllister, Perreault's primary care physician. "His record minimized the chance that consultants would make a medication mistake due to miscommunication," says McAllister. "When someone's taking a dozen pills, that's a big worry."

The Shared Care Plan, adds Perreault's daughter Bonnie Parten, transformed the relationship between her father and his doctors. "Because they worked from the same record, they were more like partners," says Parten. "His doctors weren't talking down to him. And my dad had more confidence, He wasn't confused."

The sense of partnership extended to Perreault's wife and five children.

"At first, they didn't understand very much about his health problems," says Stothart. "That changed when he gave them access to the Shared Care Plan." They realized, for instance, that when they invited him for supper, they should avoid high-salt foods because of his congestive heart failure. It was a big adjustment for a family that had eaten burgers and fries at the drive-in Perreault ran for two decades.

By clicking on one of Perreault's diagnoses in the Shared Care Plan, Bonnie Parten and the other could tap into patient education material. In the process of learning about their father's conditions, they took a second look at their own health - and lifestyle.

"Dad thought that by letting us see his medical history, he'd help us avoid going down the path he did," says Parten. "It woke me up - I've lost 20 pounds."

Not surprisingly, Parten has her own Shared Care Plan now. That's one more patient toward President's Bush goal of every American having a PHR.

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Dr. Lynne Carr Columbus, D.O.
 
 
When one clearly understands pain;
when one absolutely knows the proper treatment, then one can offer
to any patient personal pain management that works.
This is my specialization.

-Lynne Carr Columbus, D.O.