Personal Health Records Bring Benefits, Limitations to Rheumatology Patient Care

PHRs save prep time.

Rheumatologists need to know a wealth of information to provide the best care to patients. Instead of tracking down volumes of reports and lab results from multiple providers, the rheumatology patient of the future may opt to use personal health records (PHRs).

“A personal health record makes the patient an active part of the care team,” says Julie Wolter, MA, RHIA, FAHIMA, interim director, Program in Health Sciences, Doisy College of Health Sciences, St. Louis University, St. Louis.

With a PHR—also sometimes called a PMR or personal medical record—users can collect, track and share information about their health or the health of someone in their care, Wolter says. A PHR could be a simple binder in which the individual places copies of medication information, diagnosis-related images, lab work results, history and physical reports. Or the information could be part of a sophisticated software program or an app for a smartphone or tablet. For example, a $1.99 PHR app called Raphael PMR from STARx Technical Corporation allows patients to document important health information and keep track of vital stats, such as daily calorie counts, blood pressure results and blood sugar measurements, says app developer Leonard Bielory, MD, professor, Rutgers University, and attending, Department of Medicine, Robert Wood Johnson University Hospital, New Brunswick, N.J.

PHR apps and software programs allow users to store photos that may be helpful for rheumatologists to see, such as photos of joint distortion for rheumatoid arthritis patients, Dr. Bielory says. His app also has a medication reminder function that rheumatology patients might use for a daily regimen or monthly biologic infusions, as well as the ability to collect other complementary and alternative treatments, such as herbal supplements. The Raphael is available on iPads and is under development for use on the iPhone.

Rheumatology patients could use their PHR to write down what exacerbates their symptoms so they can try to avoid activities that make them feel worse.

Electronic health records (EHRs) and patient portals as required by the federal government’s meaningful use program also facilitate patient access to their personal health information, says rheumatologist Elana Oberstein, MD, MPH, medical director, EMA Rheumatology, Modernizing Medicine, Boca Raton, Fla.

The Benefits of PHRs

How can PHRs benefit rheumatologists and their patients?

“The average rheumatology patient has a complex clinical history,” Dr. Oberstein says. He says patients frequently don’t bring reports and lab results to appointments, or other doctors’ offices might not fax or e-mail those reports in time for appointments. In turn, office staff members frequently have to chase down that information. With health information in one central location that rheumatologists can easily review, PHRs save prep time.

PHRs also make the patient encounter more efficient. “With a PHR, we can have a productive visit, and everyone walks out of the room smiling. They got what they needed, and patients have great communication with their doctors,” Wolter says.

If a patient travels frequently or lives part of the year in a different location—say, a New Yorker who goes to Florida in the winter—then PHRs help that patient easily share health information with physicians in other locations, Dr. Bielory says. PHRs also allow relatives involved in a family member’s care to easily review relevant clinical information, says health literacy educator Jann Keenan, EdS, president, The Keenan Group Inc., Ellicott City, Md.

With all of its advantages, you’d think rheumatology patients would almost always arrive at your office with PHRs in hand. However, “it’s extremely infrequent that patients are using PHRs,” Dr. Oberstein says. Even getting patients to bring reports or documents prepared by referring doctors can be tricky, she adds.

Dr. Oberstein has seen younger patients share health information with providers via their smartphones or tablets, but tech know-how isn’t always a skill honed by rheumatology patients, who may be older or have difficulty using certain devices because of their joint problems.

A study of the growth of PHRs in New York (not specific to rheumatology) found that reported PHR use increased from 11% in 2012 to 17% in 2013.¹ Researchers found that those who were married, used prescription medication, had more education and used the Internet or e-mail daily were more likely to have PHRs. Many more patients are open to the idea of PHRs for themselves, their family members and even their pets, although they may not yet formally keep PHRs.

Limitations

PHRs have many advantages, but they also come with baggage, Wolter says. Patients may not always know what information they need to include in a PHR (see sidebar, right, for links that guide patients in how to create a PHR). Plus, they may not know they can ask for history and physical reports or lab data, Wolter adds.

Then there’s the health literacy challenge. The numeracy and literacy skills required to understand one’s own health information are demanding, says Keenan. Patients with low health literacy are usually less likely to view lab results, communicate with providers, request medication refills and make medication appointments with patient portals connected to EHRs, according to a 2013 report in the journal Psychology and Aging.²

The Internet might assist patients in understanding some basic health information that’s unclear to them, but there’s always the danger that they will rely on misleading websites.

As patients get their feet wet in the PHR pool, they may turn to their time-strapped physicians for some handholding. “When a patient sits face to face with their doctor, the doctor becomes the frontline educator and may need to say what resources and tools they would like to see the patient use,” Wolter says.

“How successful a practice is in helping patients adopt and use their PHR may rest on the clinician’s willingness to explain in plain language the important role patients play in improving their own healthcare,” Keenan says. “Offering easy-to-read information on the PHR can reinforce how to use and access information once the patient leaves the office.”

Written information that explains PHRs should be at a level that a majority of patients can understand—that’s usually a sixth-grade level or lower—and should avoid jargon, all caps and small font sizes, Keenan adds.

Finally, despite any best efforts, it can be tough for rheumatology patients to keep up with their health information if they are feeling fatigued by their condition, Keenan says.

Age-related cognitive changes, such as working memory, reasoning, processing speed and executive functioning, can affect older patients’ abilities to keep a PHR.2 A caregiver or family member may need to help maintain PHRs for certain patients.

Vanessa Caceres is a freelance medical writer in Bradenton, Fla.

References

1. Ancker JS, Silver M, Kaushai R. Rapid growth in use of personal health records in New York, 2012–2013. J Gen Intern Med. 2014 Jun;29(6):850–854.
2. Taha J, Czaja SJ, Sharit J, Morrow DG. Factors affecting usage of a personal health record to manage health. Psychol Aging. 2013 Dec;28(4):1124–1139.