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March 1, 2010

Tap Into the Power of PHRs
By Alice Shepherd
For The Record
Vol. 22 No. 4 P. 14

Ready to create a PHR but don’t know where to begin, what to include, and so forth? Experts offer helpful pointers on how to get the most out of this online tool.

Currently, there are approximately 200 electronic PHR options available to help consumers organize their medical data. Despite the array of choices, the technology has a low adoption rate, which is unfortunate because patient data tend to be scattered among primary care physicians, specialists, hospitals, labs, pharmacies, and insurance companies, making the information less accessible and diminishing its value.

Consumers who have a system to aggregate that information and track it over a lifetime can make more informed decisions. If anyone knows the value of PHRs, it would be HIM professionals, who handle such data on a daily basis. For those interested in establishing their own PHR, experts offer tips and advice on how to get the most out of this valuable tool.

Selecting a Platform
“It’s important to be very selective when choosing among all the different PHRs,” says Ashley Katz, executive director of Patient Privacy Rights. “Currently, no laws exist to protect consumers. Since HIPAA and other laws don’t apply, the PHR marketplace is unregulated. The wide range of PHR tools come with an equally wide range of privacy policies.”

Colin Evans, CEO of Dossia, a nonprofit organization that provides a PHR platform founded by 10 large employers to enable their employees to become more informed healthcare consumers, says selection goes beyond privacy concerns. “Selecting a platform comes down to a question of trust,” he says. “Trust is broader than privacy and security. The question is why is the company in the business of holding your health information? Is your record independent or is it tied to a specific provider or insurer? Is it offered free of charge by a company that serves up ads whenever you access your record? Is it provided by a health plan that promises to keep your data private and secure yet has a vested interest in retaining you as a member? Will your record be lost if you change health plans or hospitals?”

A PHR’s host often dictates where a patient’s information can and cannot travel. “Traditionally, PHRs have been stovepipes—places to keep your information,” says George Scriban, senior global strategist of the consumer health platform with Microsoft’s Health Solutions Group. “They haven’t been connected to the healthcare ecosystem. A PHR that is tethered to a hospital may know a lot about you but only as it relates to that hospital. A PHR offered by an insurance company will know all about your claims but nothing about your prescriptions. On the other hand, independent third-party PHRs may not be connected to anything, so you have to enter and maintain all your data manually. It’s a tedious process that has led to very slow adoption.”

Even technologies that allow users to download information directly from labs, hospitals, and health plans require a lot of work and don’t make for a good user experience, says Evans, who recommends choosing a tool that automatically gathers information from providers. “A PHR should also be more than simply a repository of information,” he says. “It should let you manage the information with different applications, products, and services depending on your needs. It should also be flexible to accommodate changing needs.”

Another consideration is whether the tool is compatible with external devices that can upload information. “Increasingly, consumer devices like glucose meters, pedometers, blood pressure cuffs, peak flow meters, and weight scales can upload their information into a PHR,” says Scriban, who cites an example from the Cleveland Clinic, which equipped a group of patients with Microsoft HealthVault-enabled devices that allow them to upload their blood pressure info from anywhere. Clinicians access the data (with the patients’ permission) to assess how well the patients are managing their hypertension.

Whose health information will be managed also factors into the platform selection process. For example, a mother who is tracking information for her entire family will need different tools than those used by an individual. “Managing health information is traditionally a family affair, usually spearheaded by Mom,” says Scriban. “HealthVault was designed as a place where a family could manage its personal health information and collate fragmented information from various sources.”

Ultimately, the choice of platform depends on the type of information consumers will enter and maintain, which in turn depends on their need and rationale for creating a PHR. Once that rationale has been established, Jessie Gruman, PhD, president and founder of the Center for Advancing Health (CFAH), suggests asking the following questions to assess platforms: Do I understand this program? Would it be helpful to me or is it too much information? How would I use it? Are the information fields relevant to my concern? What tasks would become easier if I had my health information in an organized, electronic form?

“Try out the functionality,” she recommends. “For example, enter the names of some medications and see if you can get a report. Try to create an advance directive.”

What Information Should a PHR Contain?
Among the essential items every PHR should include are the names and contact information of providers, insurance companies, and emergency contacts. “The two main drivers for establishing a PHR are coordination of care and safety,” says Evans. “Coordination of care means that every doctor you see will know what your other doctors are doing. Safety means being able to provide a complete view of your medical condition to an ER physician who hasn’t seen you before. Lists of medications and allergies are therefore very important to include in your PHR.”

Records of lab tests and physical exams (even if only listing the dates and providers rather than actual results) may also be included, as well as discharge summaries of the last two or three doctor visits. Since most chronic care management is done outside the clinical care setting with office visits occurring only about every six months, it’s important to track data between visits. “If you’re interested in plotting weight, cholesterol level, blood pressure, medication effectiveness, and similar data over time, look for a PHR that will let you do that,” Gruman suggests.

“A one-time measure of blood pressure during an office visit is much less useful to a physician than a daily record since the last visit,” says Evans.

Because of capacity concerns, it’s currently impractical to store digital images in a PHR. However, it is possible to store a link to the image. “Long-term storage of images is usually unnecessary anyway,” says Evans. “A 30-day-old image may be useful but perhaps not a 40-year-old image from a childhood leg break. PHRs don’t need to contain the minutiae that a doctor’s record might contain. They’re really about patient empowerment and should incorporate the information that helps people coordinate their care.”

“The PHR should allow you to record the dates and types of vaccinations, tests, and preventive regimens, such as colonoscopies and mammograms,” says Gruman. “Many PHRs allow you to ‘ping’ yourself and remind you to schedule a test. Whether your PHR is electronic, a loose-leaf notebook, or a shoebox, it’s important to have a complete record because no one else will keep it for you.”

Provider Reaction
Patients who present their PHRs to physicians should not be disappointed if they receive an underwhelming reaction. “Don’t expect providers to download or even accept the information that’s in your PHR,” says Gruman. “Its format may not be compatible with their EMR, and they may not trust the source of the information. In general, physician practices are poorly prepared to take electronic information from patients since most still don’t have their own EMR.”

Part of the reason for physician disinterest in PHRs can be attributed to economic factors, says Evans. “Physicians are concerned about care, money, and liability,” he notes. “Some may wonder if the patient is trying to avoid a test or get out of paying the doctor by bringing in PHR information. Some institutions think the purpose of the PHR is cost reduction, which is usually someone else’s salary reduction. They’re also concerned about liability because the more information they get, the greater the chance they could miss something.”

Nevertheless, Scriban says PHRs can make office visits more productive. “Physicians haven’t paid much attention to PHRs, but when a patient comes in with a couple of months of blood pressures or blood glucose data, a sleep journal, or a diet journal, it makes for a more effective 15-minute appointment,” he says. “Now the discussion can focus on real issues based on real data, not vague recollections of symptoms.”

While some PHRs automatically pull data from hospital systems, providers don’t want to download PHR data from other sources, says Evans. “Perhaps in the future we’ll see an intermediate phase where PHR data will be accepted into a provider system with an annotation as to its source,” he says. “The doctor will have control over how the data is used, just as with the information provided by the patient on a check-in clipboard.”

How Private Are PHRs?
Recently, Patient Privacy Rights released a privacy report card on six PHRs (available at www.patientprivacyrights.org/site/PageServer?pagename=PHR_Report_Card) to help consumers with the selection process.

“It’s very challenging for consumers to wade through the different privacy policies,” says Katz. “Many are written by lawyers for lawyers. We translated all the legal language into plain English. However, we can’t research all the PHRs in the market, so it’s up to consumers to do their homework. How much control does the consumer have over the information? Who can access the record? What third parties have access and how will they use the information?”

Katz cautions against using a PHR that’s offered by an employer or an insurer. “I have yet to find one that has the right protections in place that keep the employer or the insurer from accessing the information,” she says. “PHRs are designed to include much more data than a standard EHR. Some PHRs offer detailed health quizzes, which may ask how many sexual partners you’ve had or how often you consume alcohol. Imagine if your employer or insurance company accessed such sensitive information.”

Some large companies that offer PHR platforms may provide solid security and privacy, but it’s important to also scrutinize the policies of their partners who provide additional tools and services, Katz says. “It’s a new market, so consumers have to be wary of handing over their information without thinking through the consequences,” she adds.

Scriban says consumers must man the controls. “Privacy protections are all about putting the user at the center of every transaction, giving them the tools to make explicit decisions about where their data goes,” he explains.

The Power of Knowledge
PHRs can help consumers make better healthcare decisions because they have the data to view their care in a more holistic way. “Currently, the healthcare system is designed for the benefit of everyone but the patient,” says Evans. “The information systems, the payment systems, the laws of visibility all meet the needs of the healthcare system. At the same time, people increasingly have a financial stake in their own health as employers move to consumer-driven health plans or health savings accounts. As people get engaged, they tend to ask questions that make them smarter consumers. Information is power. Everyone should take charge of their health.”

Gruman agrees: “People who take charge of their health information have a better chance of benefiting from their care. Consumers with PHRs waste less time and resources and mitigate the risk of medical errors. As medicine and health technology have advanced, the promise of a better and longer life with chronic disease has increased, but much of the responsibility for making use of healthcare and healthcare technology falls on consumers.”

PHRs should also be viewed as a means of bringing together the two most important people in the healthcare arena: physicians and consumers. “PHRs shouldn’t come between a patient and his or her doctor; they should improve the relationship,” notes Scriban. “Hopefully, physicians will learn to take advantage of PHRs to be more present in the lives of their patients in between office visits.”

— Alice Shepherd is a southern California-based business-to-business journalist specializing in healthcare topics.


PHRs: What’s the Use?
In early 2009, the consulting firm User Centric conducted a study of PHRs to learn about the features and functions that people find most useful. “While some PHR technology may be user friendly, that doesn’t mean it’s useful. It’s important to distinguish usability from utility,” says Robert Schumacher, PhD, User Centric’s managing director. “Utility simply means is it useful for me? Does it have the features that allow me to do my job? At this point, the answer to those questions is ‘no’ for many people.”

While a healthy 24-year-old may not find much value in the technology, PHRs are useful in several areas, according to Schumacher. One is to manage information for multiple family members, such as tracking children’s immunizations, following trends of ear infections, and tracking visits and outcomes across multiple doctors. Also, PHRs are useful for managing chronic diseases and treatments, including drug interactions and allergies. Finally, PHRs can be valuable when tracking wellness objectives, such as weight loss, exercise regimens, and nutrition.

Even with scores of PHR platforms on the market, only a small percentage of consumers is aware of their existence. “Education is needed,” says Schumacher, “and we’re still missing the ‘killer app.’ Until people see a value that makes them say, ‘I need this. I must have this,’ high-level adoption won’t occur. It’s like online banking in the days before online bill pay.”

Employers providing PHRs to implement wellness programs to reduce the cost of insurance is a step in the right direction. However, Schumacher cautions employers to be careful in how they promote PHR information. “In a second study, we found that there were two groups with whom consumers did not want to share their PHR data: insurance companies and employers. People will benefit from wellness programs and lower insurance costs, but employers and insurance companies must proceed cautiously with PHR integration,” he says.    

— AS