PHRs: Power to the Patients

It seems like such a simple idea: A patient-owned, electronic personal health record (PHR) that both patients and physicians can populate with data to create an accurate, comprehensive care “picture” and ensure the patient gets optimized care. After all, who knows more about a patient than that patient?

Personally controlled health record technology is expanding, especially in light of the HITECH Act and HIPAA rules which are mandating that physician offices be able to share patient records electronically with patients. The incentives for meaningful use of healthcare data include measures to encourage multiple organizations to share data in a patient-centered way, thus involving patients in discussions of their care.

But can patients trust physicians to include accurate information in their PHRs, and vice versa? How much clinical information should patients be allowed to see, and who else should be able to access it? Should patients be able to correct their health records? Four organizations with unique personal health record (PHR) systems weigh in on these questions, the implementation process and where they see PHRs moving into the future.

Disaster relief

The University of Texas MD Anderson Cancer Center, in Houston, realized the need for a PHRs after Hurricane Katrina struck New Orleans in August 2005, and patients from New Orleans began coming to MD Anderson for treatment because their hometown hospitals were closed or destroyed.

“We started creating an electronic health record about 10 years ago, and about five years ago, after Katrina, we became convinced that portable medical records were going to be very helpful for our patients,” says Thomas W. Feeley, MD, vice president of medical operations and head of the division of anesthesiology and critical care.

With this in mind, MD Anderson embarked on a project that placed EHR elements on a web-based platform, now known as MyMDAnderson, to which patients can log in via secured access. “We decided to create a portion of the existing patient-centered website that would allow patients to access selected aspects of their own medical record,” explains Feeley.

This patient-centered website—which went live in April 2009—allows the patient to access selected aspects of his or her medical record, including laboratory and diagnostic tests. And although the PHR does not include sensitive information, such as psychiatric evaluations, says Feeley, “it provides enough information [for patients] about what’s happening in their disease and to find out what’s really going on in their care.”

Referring physicians benefit from MyMDAnderson as well. As long as the patient grants his or her community physician permission to view the PHR, the physician has every bit of information in the medical record, eliminating the need to wait for information to come in the mail or trying to understand the treatment plans and test results from the patients’ perspective. “This has been very well received from the referring physicians,” notes Feeley.

Although patients cannot edit any of the information in their PHR, they can submit an amendment to change any misinformation or missing information, which is then verified by the physician and added to the PHR by the clinic, says Feeley.

As a result, patients are becoming increasingly involved in making sure that their health information is correct and are more engaged in their own care, he notes. “We definitely think the more information a patient has, the better he or she is going understand the treatment and are going to be able to ask more meaningful questions of physicians,” Feeley says.

And the patients have responded well to the PHR, offers Feeley, noting that patient involvement will dictate how the website is redesigned in the future. “This is what patients want,” he says. “They want to be engaged in their treatment.”

EMR/PHR collaboration

The Mayo Clinic, based in Rochester, Minn., uses a PHR called Mayo Clinic Health Manager, co-developed by Mayo Clinic and Microsoft. This “smart PHR” uses data from a web-based repository, which the patient populates or has populated by caregivers, and can contain information from multiple sources.

Available to anyone even if they are not a Mayo Clinic patient, Mayo Clinic Health Manager is one part of the dual approach that Mayo uses to combine functionalities developed both in-house and leveraged from external applications. In addition, Mayo provides an EMR-tethered portal for its patients.

Using data stored in Microsoft HealthVault, Mayo Clinic Health Manager is distinct from the hospital electronic medical record (EMR) because the system allows the patient to actively manage this record, says Eric Edell, MD, FCCP, medical director of the Mayo Clinic patient online services.

As information is aggregated from the patient’s EMR into the Mayo Clinic patient portal, along with information entered by the patient, algorithms offer specific, individualized health recommendations and advice for the patient, such as diet suggestions for diabetics or those with heart disease.

Although the EMR has been around for more than a decade, created in parallel, the patient portal and Mayo Clinic Health Manager is still in its infancy, notes Edell. New functionalities have been rolled out slowly, including direct messaging between patients and physicians and new algorithms on which to base recommendations for patients with multiple diseases or conditions, he says.

EMR information that is viewable in a patient’s PHR includes laboratory test results, medications and immunizations. “We are working on rolling out the availability of the EMR for patients to view via our patient portal in a sort of piece-by-piece format, so we can ensure the appropriate release of sensitive information based on the patient’s request, and that requires a little programming on our part,” says Edell. The clinic is currently in the process of enabling clinical notes as well as pathology and radiology results, which are set to become available during 2011.

The release of sensitive information is one of the main concerns of physicians at Mayo; on the other hand, patients’ No. 1 concern is information security. By offering direct access to the EMR through its patient portal, Mayo allows the patient to view the data, and he or she can opt to export it to a PHR. Edell notes that this “dual approach” is Mayo’s solution to the issue of security, because any data put in web-based repositories are there at the discretion of the patient.

Also in place is a proxy function that allows parents to view EMR information for their children, and a two-way messaging system for the patients or parents to communicate with the care team. “Those were the first high-level requests that patients listed as top priorities,” Edell says.

While patients are “asking and clamoring for more” sharing of information, physicians initially had workload concerns with the launch of the patient portal. However, pilot studies conducted so far have shown that, thanks to the portal, there has been a decrease in phone calls to the physicians. “While not fully quantifiable at this point, it is clearly making workflow more efficient,” he says.

What Patients Want in a PHR

According to a 2009 report in the Journal of Medical Internet Research: 75 percent of consumers want access online to medical records, test results and appointment scheduling as top priorities. One in four consumers are willing to pay extra for the service. 60 percent have reported they would use a PHR if one were available.   Currently, only 25 percent of Americans have PHR access, and just 2 to 3 percent actually use the service. According to an evaluation of PHRs that compared Microsoft HealthVault to Google Health, presented at the Hawaii International Conference on System Sciences in January 2010: 35 percent of consumers would like to be able to add information to their health records. 29 percent expressed concerns over information correctness. 56 percent would like the ability to view their PHR at a physician’s office. 47 percent would like the ability to view their PHR on their home computer. 77 percent are interested in getting email reminders from their doctors about appointment and other medical procedures.

Pediatric considerations

Children’s Hospital Boston sought to create an interactive mode of care for their patients with complex conditions, many of whom receive primary care from various facilities around the country and different parts of the world, while receiving specialty treatment at the hospital. The result was a PHR called My Children’s, “a straightforward way to make crucial info available to patients and their families,” says William Crawford, director of the informatics solutions group.

My Children’s was deployed by Daniel Nigrin, MD, MS, senior vice president for information services and CIO of the division of endocrinology and informatics program and Fabienne Bourgeois, MD, MPH. The PHR not only allows the hospital to share information with patients and their families, but also with their primary care physicians, if they wish.

“You need a way for multiple organizations to share information about the care of a patient and you need to involve the patient in that conversation,” says Crawford.

Pilot studies began in 2003 for the My Children’s platform and the PHR—which was developed in-house—was rolled out for the patient population in 2007. Parents “are the best sources of information about their [children’s] care,” and they currently have the ability to enter allergies and medications into the PHR, Crawford says.

Patients and parents also have the ability to communicate with the physician through the PHR, but cannot edit clinical notes, he adds.

The issue that the facility faces is its underage patient population, the vast majority of whom are under age 16. Adult patient information shared online is “not a complicated process under HIPAA,” notes Crawford, but Children’s Hospital had to untangle the legal questions of “who would get to see what” in cases of divorced or remarried parents, parents with restraining orders, and those with joint or single custody.

Despite the information-access concerns on the part of the hospital, both the patients and their parents are responding quite well to the PHR, says Crawford. “Once people have experience with a practice that has a portal, and they can renew prescriptions online and make appointments online, it becomes a must-have,” he says.

Giving the patient a voice

My HealtheVet, a “comprehensive PHR” offering tools, services and transactions, is improving patient care for veterans by offering these patients, their families and caregivers a digestible view of their health information, says Theresa Hancock, director of the Office Health Information and Veterans & Consumers Health Informatics Office and program director for My HealtheVet within the Department of Veteran Affairs (VA).

The PHR, which was developed in-house, piloted in 2001 and went live in 2003, has three parts. First, the VA provides health information for the general public, veterans and their family members to view online. Second, veterans can make an account that allows access to self-entered information. Third, after providing in-person identification and the proper credentials to the VA, the patient has the choice of upgrading to the My HealtheVet account tied to the authoritative medical record, says Hancock.

“[The PHR] is available to all veterans and is a copy of information that is in their medical record along with self-entered information,” she says. “The idea is that the veteran has control of this data and owns them.”
As a result, veterans’ delegation of who has access to their PHR is a contentious issue the VA faces, Hancock says.

Because the VA emphasizes patient ownership of the information, veteran focus groups have been integral in determining what capabilities the PHR has. The most requested feature is online ordering of prescription refills, says Hancock. Patients have the ability to enter various histories, including family and military health history, as well as blood pressure, weight logging and keeping track of medical events, outside appointments, insurance and providers. In addition, the PHR includes information, tools and resources to address mental health issues.

My HealtheVet also provides clinical reminders for the patient, such as mammogram reminders, says Hancock. The information can either be pre-populated by the EMR, or patients or their caretakers can enter it in their calendar. The VA has worked collaboratively with regional and local facilities to bring national or local health event alerts, such as availability of immunizations, to veterans via the PHR, according to Hancock.

The PHR has just reached a milestone of 1 million users, Hancock says. By leveraging the PHR as a communication tool, “veterans can be aware and better informed consumers.”

Baby steps

Ultimately, patient-owned electronic health records can cut out the middle man in terms of data collection, but implementation is not happening quickly because it has to been done deliberately to yield the best results, Feeley says. “I think it’s a very direct way of getting patient-specific information directly into the record. We must direct questions to the patient, but it has to be done correctly and that is why is hasn’t happened overwhelmingly yet,” he says.

And in the long run, the general consensus among many physicians is that the value of the PHR lies in its ability to improve communication between a patient and their primary care physician, as well as any specialty physician involved in the overall episode of patient care.