PHR: Pretty Half-hearted Reception

Despite the abundance of personal health record systems, patients have been slow to adopt them. But new technology and an expanded scope may change this.

By — Posted Dec. 3, 2007

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One doesn't have to look hard to find a personal health record system. A 2006 study by the Markle Foundation found that more than 200 PHR systems are available, and new products are continually being announced. But studies also show that availability is not translating into use, with only about 5% of all patients using PHRs.

Vendors have had a hard time selling the idea of a personal medical diary to healthy consumers who see their doctors maybe once or twice a year. In addition to privacy and security concerns, patients are staying away because the PHRs on the market aren't doing much to entice them, analysts say. The industry also has failed to come up with a convincing argument for why doctors should encourage their use.

But the technology is changing, along with the scope, to make PHRs more attractive. Vendors are reaching out to health plans and employers in hopes of encouraging PHR use through incentives. And expanded data sets make the records more useful to physicians.

PHRs have been welcomed by their original target audience: patients in active treatment and their caregivers, said Peter Waegemann, executive director of the Medical Records Institute, which researches electronic medical record usage and adoption.

But even among early adopters, privacy and security were major concerns, said Cynthia Solomon, founder of Sonoma-Calif.-based FollowMe. One of the first known Internet-based PHRs, FollowMe was launched in 2000 by Solomon, who was caring for her chronically ill son.

Patients simply weren't convinced that records would remain as secure as the vendors made them out to be, Solomon said. And the burgeoning interest in PHRs by employers and insurers is doing little to alleviate those concerns, she said.

But encouraging that interest by employers and insurers is essential, since the original business model for PHRs did not prove to be a lucrative one, Waegemann said.

"They found out you can't market well to individuals ... so they have been going to clubs and employers to get it sponsored," he said. "The moment you get it sponsored, you don't have the privacy or security ... and people aren't using it."

Privacy concerns, including the fear that employers and insurers could gain access to potentially damaging personal health information, have prompted a group of state and national organizations to join forces with some of the technology vendors to ask Congress to pass federal privacy regulations. The Coalition for Patient Privacy delivered a letter to Congress on Oct. 18 asking for patient privacy laws that will place patients in control of how their electronic medical records, including PHRs, can be used and shared.

David Lansky, PhD, senior director of health programs for the nonprofit Markle Foundation, said people also have gotten hung up on the "record" aspect of the PHR. There have been few incentives for a healthy person to create a PHR simply for record-keeping.

Defining the future

The PHR market saturation is due, in part, to the fact that there is no industrywide definition, so products ranging from online diaries to physician-owned medical records are all identified as PHRs.

The Office of the National Coordinator for Health Information Technology is developing definitions for key technology terms, including PHR.

But despite the lack of an official definition, there are universally known attributes that most PHRs try to emulate. The most widely recognized attribute, and the one that separates PHRs from EMRs, is that PHRs are managed and controlled by the patient.

But the definition of "patient control" is also under debate, said ONC spokeswoman Nancy A.F. Szemraj.

Several insurance companies and employers in recent months have launched what they are referring to as PHRs.

Kaiser Permanente, for example, launched My Health Record, available to 8.7 million people.

While most of these plan-sponsored records allow the patient to view information, few allow the patient to control how data are used, or allow the record to go with the person when they leave a job or change plans.

One large benefit of the insurers getting involved in the PHR realm has been their ability to make the records more robust.

Some insurer-sponsored PHRs, for example, include claims data, medication histories and even medical histories.

PHR vendors are also trying to assure the public they are committed to patient privacy. A Jan. 5, 2007, report prepared for the HHS found that PHR privacy policies vary widely, even though the Institute of Medicine defines privacy as not just the ability to shield information from unwanted eyes, but puts the patient in control.

For example, the Coalition for Patient Privacy noted that Microsoft, in developing its new Health Vault PHR, used standards developed by the Austin, Texas-based group to try to ensure that data can be collected from several sources, including physicians, while still keeping the patient in control of how information is used and shared.

Microsoft also signed onto the coalition's Oct. 18 letter to Congress calling for a federal statutory right to health privacy, which the letter says HIPAA does not provide.

Companies also are adapting records to make them more useful for physicians.

Solomon said that after clients requested a way for their physicians to contribute to the records, FollowMe added a physician portal that allows doctors to add information that cannot be changed by anyone else. Solomon said a notation indicates which information was entered by a health care professional and what was entered by the patient or caregiver.

Medem Inc., whose investors include the AMA and other medical societies, took similar steps when it recently partnered with MEDecision, which will add payer information to Medem's PHRs. Medem CEO Edward Fotsch, MD, said the partnership was the first step in making the records more detailed with information meaningful to both physicians and patients.

Waegemann predicts that future PHRs will be used for many lifestyle, wellness and health aspects, including prenatal monitoring, disease prevention and sports medicine. The systems will offer lifestyle suggestions or tips based on the downloaded data.

Dr. Lansky said that as PHR vendors add functionalities such as secure e-mailing and online scheduling, more people will create PHRs.

All of these functionalities are helping to develop a patient history that might be useful later in life, experts say, and are prompting the conversion from a PHR to a personal health information system of which the actual PHR will be only a small part.

But while there is great hope for the future of PHRs, it remains to be seen what role they will play in transforming health care, even if they gain widespread acceptance among patients.

Chris Ewin, MD, a family physician who has a retainer practice in Fort Worth, Texas, says he is not convinced that either patients or doctors are going to embrace PHRs enthusiastically.

Dr. Ewin says that "99%" of his patients do not use a PHR, and many "refuse to get on there" even if suggested. But Dr. Ewin said he hasn't much encouraged the use of PHRs, either, because at this point they offer him few advantages.

He said the potential problems with patient-controlled PHRs are apparent when information gets transferred to him from doctor-controlled EMRs. The biggest of those problems is too much information, which Dr. Ewin says leads him to believe that PHRs which contain more data are not likely to be especially attractive to doctors.

"There is so much information in there that is cut and pasted that has nothing to do with what [the patient's] problem is," he said. And in his case, with a retainer practice, data full of ICD-9 and CPT codes -- which he does not use -- have a negative impact on his work flow, Dr. Ewin said.

Dr. Lansky agrees that there is such a thing as too much information. But the same is true for paper records. He said physicians can pull out what's important, and electronic filters can be added to some programs to assist in extracting the most relevant data.

Solomon said there was heavy resistance when her clients started asking that their doctors get involved and contribute to and use PHRs. "But now they love it," she said.

"If we can convince [doctors] that it will save time, that will be helpful," Solomon said.

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What is a PHR?

"Personal health record" is often defined as an electronic record of a patient's health, controlled by that patient, who may take it from doctor to doctor or have it available online in case of emergency. But not all PHRs follow that template. The Medical Records Institute has defined four types that exist today.

PHR lite: The patient has some access to the record, but cannot change, add or correct information. It can be paper or electronic and is generally provided by a physician, payer or employer.

Device- or function-specific: The record is specific to a condition or disease, such as diabetes, or used to monitor the use of a medical device. It is not interoperable with an EMR and cannot be synchronized beyond the specific condition or device it is intended to monitor. Usually provided by a device manufacturer.

Full-function: The record synchronizes with various physician EMRs and uses a combination of data entered by physicians and patients. The patient or the patient's caregiver controls the record.

Part of a PHI: A personal health information system stores data from a variety of sources including EMRs, personal software, monitoring devices and preventive care systems. The patient controls the record.

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A first-generation PHR keeps evolving

Cynthia Solomon, founder of FollowMe, one of the first known personal health record systems in the country, said since the system's launch in 2000, she has had to take inspiration from its name, and follow market trends to update and adapt her offerings.

Solomon developed FollowMe as an ongoing diary of her son's treatments for a chronic condition, a device to keep his medical history in one place. This was the basic concept that fueled many of the first-generation PHRs, which were little more than Web-based diaries.

But as the health care industry, and the federal government, started to see the potential benefits of PHRs, the push has become greater for widespread adoption as a way to curb health care costs and increase patient safety. The PHR products are changing to meet those demands, and FollowMe is no exception.

Solomon said from the beginning the biggest request was from patients who wanted a way for their physicians to contribute to the records. FollowMe responded by creating a product with a portal for physicians to add clinical notes, test results and diagnostic information. Other platforms that have been created include one specific to patients with developmental disabilities who live in group homes and need others to enter and access information.

Other condition-specific products are in the works, Solomon said, and those changes also are driven by client demand.

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