February 16, 2009

Unlocking the Secret to Successful PHRs
By Selena Chavis
For The Record
Vol. 21 No. 4 P. 10

As overall adoption lags across the nation, healthcare organizations and opportunistic enterprises seek business models that engage consumers.

When it comes to personal health records (PHRs), access isn’t the issue for most patients. According to “A Research Agenda for Personal Health Records” published in the Journal of the American Medical Informatics Association, an estimated 70 million people in the United States have access to some form of PHR.

Other research points to the fact that 75% of Americans would take advantage of the ability to communicate electronically with their physicians through a PHR, yet adoption on many levels has been disappointing, with some statistics suggesting a mere 10% to 15% uptake.

“There’s very little out there at this point,” says C. Peter Waegemann, CEO of the Boston-based Medical Records Institute, noting that patients may open a PHR but never do much with it. “There are not many large, successful implementations.”

But there are a few organizations that have found success. Kaiser Permanente implemented its PHR offering to members in 2005 and, according to Jan Oldenburg, senior practice leader in Kaiser’s Internet Services Group, 2.6 million of the organization’s members have opened and accessed an account, equating to 45% of membership.

Wes Rishel, vice president/analyst with Gartner research group, notes that Kaiser Permanente and the Department of Veterans Affairs (VA) are two groups that have singled themselves out as leaders through their ability to engage patients through the Web. In the case of the VA, a Web-based PHR called My HealtheVet allows approximately 25,000 veterans to obtain authoritative health information, link to federal and VA benefits and resources, access a personal health journal, and request prescription refills online.

Rishel notes, however, that these offerings are not necessarily true to the concept of patient ownership in the way many organizations define a PHR. “Fundamentally, if I have a PHR, it’s mine. It stays with me … and if I don’t like something in there, I can delete it,” he says, adding that currently the most successful PHRs are more of a “patient view” concept as opposed to a true PHR.

Still, there are several factors that have hindered the effectiveness of PHRs. Awareness has been one issue, says Marsha Dolan, MBA, RHIA, an associate professor with Missouri Western State University and co-coordinator of the AHIMA’s Community Education Campaign for the state. But there are other factors at play that discourage ownership and the use of PHRs. Specifically, patients are often overwhelmed at the time and effort it takes to keep a PHR updated and accurate outside of a healthcare institution, and many physicians are skeptical of information in a PHR that is updated by a patient only.

Then there’s the issue of privacy. Many patients want control of who sees what in their PHR.

The AHIMA’s myPHR.com is one effort to educate the general public about the long-term benefits of having a PHR to improve provider care and patient health and create overall efficiencies in the healthcare system.
“AHIMA has been really focused on consumer education. We want consumers to be empowered to understand their care, avoid duplicative testing, and work as a team member with their provider,” says Dolan, who notes how PHRs could help address fragmented care issues. “There doesn’t seem to be one person that can get hold of all [of a patient’s information] to make the most informed decisions.”

What Works  
While the overriding concept of a PHR is to give consumers more ownership of their healthcare, the business models that seem to work best have taken on more of a shared approach, according to Rishel. Acknowledging that there are many different views of what constitutes a PHR, Rishel suggests that products currently being used the most are really an outgrowth of the medical record provided by a provider or healthcare organization.

Data are electronically downloaded into a patient’s PHR from an organization’s electronic health record (EHR), addressing the issues of ease of use and convenience that most patients are seeking. “People feel that it’s tedious … entering all of your own data,” Rishel notes.

Kaiser Permanente’s PHR creates a resource for easy interaction between providers and patients. “We had an existing [Web site portal] that offered resources and pharmacy refill,” Oldenburg says. “What we added was a full set of features [for a PHR]. What we are doing is much more akin to in-the-moment care.”

The organization’s My Health manager provides online appointment scheduling and prescription refills. In addition, users have 24/7 online access to lab test results, eligibility and benefits information, and immunization records, as well as secure e-mail messaging.

Oldenburg says test results are provided in real time, and physicians are able to make quick decisions or change course readily if needed. “The difference is that you are focused on those in-the-moment things that affect your health,” she says. “Providers are actually starting to use this as a way of initiating care. Physicians are seeing this as an active adjunct to what they are providing.”

Key to its success is the tool’s ability to link directly to the Kaiser Permanente HealthConnect EHR. “It is critically important if we want to move to a PHR concept that it is electronic,” suggests Dolan, who cites the desire of consumers and physicians to have data downloaded directly from a medical record.

Waegemann notes that when patients try to summarize health records in their own records, they are often faced with the difficulties of deciphering unfamiliar medical terms and acronyms recorded by physicians. “A patient is then left to try and summarize it in their own words, and if a patient is modifying it, many physicians will not use it,” he says. “You need the first data set provided by a clinic or hospital.”

The Certification Commission for Healthcare Information Technology (CCHIT) is currently working on a certification process for PHR products that will include electronic integration, a move that could improve adoption rates. “If a product wants to be a certified PHR, it will have to be electronic,” Dolan says.

Many employers are offering PHR portals as extensions of their health plans, but these often don’t evolve much past a database concept. “What I’m seeing is that people are taking the basic information and building out of that,” Dolan notes. In this approach, patients compile lists of medications, allergies, emergency numbers, advanced directives, and chronic conditions.

The success of the Kaiser offering can be found in its ability to take that concept a step further to more real-time interaction between providers and patients, according to Oldenburg. “It’s not just your historical information. … It’s the fact that it’s current and contains the directives of things you need to do with your health,” she explains. “It’s the difference between what’s nice to have and what really gets used.”

Rishel points out that one of the most unsuccessful PHR models that has been introduced to the market is the third-party health plan PHR. Because the information is essentially “claims data dressed up to look like a medical history,” Rishel says that it’s like looking at an echocardiogram of the activities that occur.

“It’s not always clear what’s going on. It takes a specialist to interpret,” he says, adding that typically the data are 30 to 60 days out of date. “Patients don’t trust health plans and don’t always think they have a patient’s best interest at heart.”

What Consumers Want
Ease of access, ease of use, privacy assurances, and complete ownership—that basically sums up what most patients are looking for from a PHR, according to many industry professionals.

Patients want to be connected, says Waegemann, who points to consumer fondness of using the most up-to-date technology to transmit PHR information and communicate with physicians. The roadblock to the evolution of this piece within the larger PHR effort comes from an unwillingness by healthcare organizations and providers to allow connectivity with devices. “They want to avoid viruses,” Waegemann says.

Dolan adds that many PHRs are on USB flash drives, and physicians are wary about using these devices.

Consumers also want more ownership of their PHRs in that they are seeking products that will allow information to be inserted via a “comment section,” especially if they feel a physician is in error or missed something. “You should not be able to change information, but you should be able to comment,” Waegemann agrees, adding that alongside the ability to add information, “Consumers really want to have a space in the PHR that they may choose not to share with a healthcare provider.”

Privacy remains a crucial issue to the PHR movement, Dolan says. In fact, to address this issue, Health and Human Services has initiated a model for PHR information sharing with a consumer focus.

A final template is expected this year that will offer a best practice method to vendors providing PHR products and services for effectively communicating with consumers about PHR privacy and security. The template calls for a PHR fact sheet that vendors can use to deliver privacy and security information in a standardized and easy-to-understand format.

The Future of the PHR Concept
Many PHRs are currently being offered by way of a portal extension from such originating points as an employer, an association health plan, or a healthcare organization’s EHR. Dolan emphasizes that “the portal becomes a PHR if the consumer can put information in there or take information out.”

Rishel points out that there are currently a couple of “true” PHR vendors—WebMD, Microsoft, and Google—offering solutions on the market, but none of the products has realized large uptake or use by consumers.

 The WebMD Health Manager allows patients to type whatever they wish into their PHR, giving the patient full ownership. Rishel notes that the issue of physician trust will still play a role in diminishing the effectiveness of this type of PHR approach due to the fact that “the source of the most input tends to be very unreliable to them.”

But the overriding problem with the success of the business model, according to Rishel, rests in its inherent interoperability problems. “That model has failed due to that issue,” he says.

Google Health and Microsoft HealthVault both offer PHR platforms, and while interoperability remains a challenge to these initiatives, Rishel believes there is greater potential for success. Similar to WebMD in the fact that patients log in, set up accounts, enter their information, and have access to a wealth of resources, Rishel says the difference is “that they have a much higher prospect of achieving interoperability,” and there has been some effort to make information electronically interchangeable.

“Technically, they are there. They have the technology and platform, but neither is there in the volume that you would consider it a success,” he says.

Microsoft HealthVault is designed to be a secure, central repository of patient data, controlled by the patient, with the ability to import electronic health data, store that data in an orderly fashion, and export portions of that data to third-party physicians, hospitals, laboratories, and insurance companies.

Similarly, Google Health allows users to create their own PHR either manually or by logging into their accounts at partnered health services providers, thereby merging potentially separate health records into one centralized location. Information can include health conditions, medications, allergies, and lab results. Once entered, the program uses the information to provide the user with a merged health record, information on conditions, and possible interactions between drugs, conditions, and allergies.

Rishel believes these PHR platforms have the potential to create innovation by running new software on top of these foundational offerings.

While industry professionals agree that these initiatives will likely propel private enterprise to the top of the PHR pursuit, Dolan warns that consumers should “be careful to read the fine print on security” because these types of providers are not considered “covered entities” under HIPAA.

In any event, most everyone agrees that finding common ground between consumer and provider preferences—and having it be interoperable—will be a key to attaining large-scale PHR adoption.

— Selena Chavis is a Florida-based freelance journalist whose writing appears regularly in various trade and consumer publications covering everything from corporate and managerial topics to healthcare and travel.