Personal Health Records at the Crossroads
In an integrated healthcare world, a personal health record (PHR) provides a secure, patient-accessible destination for clinicians to deliver information to patients from an EHR or EMR. In a less-connected system, a PHR could become another silo of information or a dead-end repository of questionable clinical value. Much depends on how they're used and by whom. And the question still remains: Will people embrace them?

The demise of Google Health's personal health record (PHR) illustrates some of the hindrances to widespread adoption in healthcare—including wary physicians, patient privacy questions, a lack of patient engagement, quality information and integration issues. Still, clinical IT leaders who figure out a way around these obstacles are harnessing PHRs to get more information and boost patient satisfaction.

But, make no mistake, the end of Google Health's PHR should not be confused with the end of PHRs in general. Consider:

  • Even before Google Health's sunset date was announced, the Bolivar, Mo.-based Citizens Memorial Healthcare, a five-facility healthcare organization serving nine counties across Missouri, had already planned to connect to Microsoft HealthVault as another PHR option. That should be ready to go live by the end of this year, says Denni McColm, CIO at Citizens Memorial.
  • Sisters of Mercy Health System in Chesterfield, Mo., has seen an exponential increase in PHR users within three months. Following a marketing campaign in November 2010, the provider which serves communities across Arkansas, Kansas, Missouri and Oklahoma, saw a spike in PHR usage, from 10,000 to 140,000 users, according to Chris Davis, MD, physician informaticists at the Center for Medical Informatics.

If PHRs are providing an easy means for patients to access their records, pay bills, schedule appointments and/or refill medications in some organizations, what's the problem? There are several: First, patients can be as reluctant as physicians when it comes to using a PHR to engage in their own care. In fact, a mere 7 percent of survey respondents reported having ever used a PHR in a 2011 IDC Health Insights poll.

"The leading reason for not using a PHR was not being exposed to the idea [50.6 percent in 2011]," wrote Lynne A. Dunbrack, MBA, in the IDC report, released in March. The report, "Vendor Assessment: When Will PHR Platforms Gain Consumer Acceptance," was based on responses from approximately 1,200 consumers.

These results almost mirrored those of a 2006 survey from the same organization, where 7 percent of respondents reported ever having used a PHR. Close to 52 percent cited the main reason for not using one being because they weren't exposed to the concept (50.6 percent in 2011 and 51.9 in 2006).

Most PHRs are modules of hospital or physician websites (25 percent total) and health plan websites (21.4 percent), according to the 2011 report. Introducing patients to a PHR isn't the only challenge, either: Among the 7 percent who reported using a PHR in 2011, fewer than half (47.6 percent) are still using one to manage their family's health, the report notes.

For providers, the jury is out on the reliability of PHRs, says Matthew Wynia, MD, MPH, director at the Institute for Ethics and Center for Patient Safety at the American Medical Association in Chicago. Wynia and colleagues found that only 14 percent of 856 responding physicians reported using PHRs daily, in findings published in the February edition of Health Affairs.

"Many physicians are a little wary of using data sources they don't know," says Wynia. "In our research, [we found that] 79 percent of the physicians were concerned that a PHR might contain incorrect information. This was a prevalent concern among physicians, both willing and unwilling to use PHRs."

Top 10 PHR Features Used by Patients
Citizens Memorial initially had physicians who were reluctant to use them, but they were asked to give the PHR and portal a try, McColm says. "The piece the physicians interact with most is the portal, which they don't even realize, because it is so integrated," she says. Also, patient messages are present in the same way if the physicians came from the portal or a phone call. Likewise, medication refill requests are the same if they came from a pharmacy or from the portal. At Citizens Memorial, no providers have requested to disengage from either the portal or PHR.

Via the PHR, Citizens Memorial had some providers concerned about patients getting lab results before they had a chance to review them. "Therefore, we are holding very sensitive results, such as HIV tests. Otherwise, results are transmitted as soon as they are available in the EHR to the PHR. It hasn't been a problem," McColm adds.

Among the 14 percent of respondents who were self-described frequent PHR users, 65 percent were worried about inadequate privacy protections and 67 percent were worried about incorrect data populating the PHR, says Wynia. "Even once you begin using PHRs, the physicians are still worried."

Hit the ground Googling

If Wynia and Dunbrack's data are indicators of the state of PHR use, it's a wonder that Google decided to pull the plug on its service due to low adoption. When contacted for more information about why the PHR is being discontinued, Jason Freidenfelds, from Google's Communications & Public Affairs department, said via email that the Mountain View, Calif.-based company refused additional comment beyond the company's June 24 blog post.

"Failing to scale as planned" is what the company announced in June in Google Health's phase out plan. The service will be officially "retired" on Jan. 1, 2012, although data will be available for downloaded through Jan. 1, 2013.

Citing adoption among tech-savvy patients and their caregivers as well as fitness enthusiasts, the company hadn't "found a way to translate that limited usage into widespread adoption in the daily health routines of millions of people," wrote Aaron Brown, senior product manager of Google Health, in a June 24 blog posting.

"We believe [Google Health] did highlight the importance of access to information in areas where it's traditionally been difficult," he wrote.

Google Health relied on gaining users over time rather than being advertising-driven. Thus, its business model depended on increasing numbers of users who would be led through normal Google search results and its revenue-based search model via health-related topics.

Is the worst over?

Despite the exit of what was arguably the industry's biggest PHR player, PHRs aren't going away. "Their time is coming, although it's not here yet," says Erica Drazen, managing partner at the Global Institute for Emerging Healthcare Technologies at Falls Church, Va.-based IT service company, CSC.

PHRs come in three flavors:
Untethered – An electronic or paper model where the content is created and controlled by the user. This involves manual data entry and updates.

Tethered – This PHR employs a patient-facing extension of the clinician-controlled EHR through a web portal. In this model, patient data are controlled by the healthcare provider.

Payor-tethered – A PHR tethered to a payor or employer that is populated with claims information. In this model, the PHR rarely includes any clinical information directly from the providers but some allow members to enter basic information such as height and weight, known allergies or any over-the-counter medications taken.

Source: Erica Drazen, Managing Partner, Global Institute for Emerging Healthcare Technologies, CSC
Each of the three PHR models (see chart) are inadequate in different ways, experts note. The payor-tethered model has a broad data stream flowing into it, but is limited in its shallowness. "The PHR tethered to the payor contains information on all the services that are paid for, but doesn't include clinical results," says Drazen. "For example, it would include the fact that a test or imaging study was performed, but not the results of those studies." The tethered model typically includes only data from the provider's EHR, so a physician could potentially not have a patient's complete record if he or she visits other practices.

For the untethered model, the burden falls on patients to enter information, which can be daunting and errors can occur, says Drazen.  

In addition, PHRs currently employ few interactive features such as alerts that notify patients or physicians when potential clinical adverse events arise. Drazen believes that the meaningful use and IT evolution will spur much wider PHR use—and soon.

Recent research supports her prediction. A June report from market researcher Frost & Sullivan found that the PHR software market generated revenues of $312.2 million in 2010 and estimates that revenues will reach $414.8 million in 2015, representing a compound annual growth rate of 5.8 percent. The Mountain View, Calif.-based firm cites higher adoption due to a rising awareness of the value of PHRs, increased use of EHRs by physicians and hospitals, as well as mobile technology can enhance PHR usability.

In terms of trust, the tethered model could be seen as an easy win to the increased trust on the data security front. One finding not reported in the Health Affairs article that Wynia notes is the survey also asked physicians whether they would be more likely to trust PHR data depending on who hosted the PHR. The closer the PHR is to their practice, Wynia says, the more physicians will trust the PHR to be secure. Eighty percent of respondents said they would trust a PHR from a medical society, while 85 percent trusted a PHR offered by their medical group. "But if you look at a commercial entity, only 39 percent say they would trust that PHR," Wynia says.

A critical piece of PHRs is consumers' quick access to their health data, according Nate McLemore, MBA, general manager of business development for Microsoft Health Solutions Group in Redmond, Wash.

Microsoft HealthVault began as a means for patients to aggregate, store and share their personal health information. According to McLemore, when data start to flow, a patient's participation in and engagement with his or her health could be changed by managing his or her own health.

Although Microsoft does not disclose discrete data for HealthVault, McLemore says it has seen increases in clinical use related to PHRs. Connecting to more than 70 devices, including scales, glucose meters and heart rate monitors, McLemore says that he's seen increasing interaction with the product as part of the preadmission and discharge processes, as well as reviewing lab results.

At the end of the day, McLemore sees PHRs as a powerful means to engage patients in their care. "One misconception is people don't want their data online and people need to realize that their data are already out there and being moved around to help care. [PHRs] allow patients to participate in the care process and be empowered with services and insights, such as allowing the patient to track their cholesterol and share that information with other providers."

PHRs at work

Citizens Memorial uses a mix of PHR materials, including a hospital-supplied patient portal of their EHR and Google Health service—with HealthVault on the way. "The workflow is great," says McColm. "The PHR allows us to grant [patients] access to their record, and patients can request appointments and refill medications."

McColm believes that the use of the PHR will enable Citizens Memorial to qualify for a variety of meaningful use measures, including the required demonstration of health information exchange (HIE). "We're sending out continuity of care records to Google, and patients are receiving them," she says. "We think we can qualify [for meaningful use] because this is a patient requesting a release of his or her information electronically instead of in person."

In addition to Google Health features, HealthVault will have the capability to accommodate more reports as well as clinical images, McColm notes. HealthVault also has a feature that facilitates transfer of Google Health records to HealthVault. "Our plan is to notify our patients using Google Health of the change with a link to the HealthVault site," says McColm. "We had intended for HealthVault to be another option for patients, but that will be the only PHR that we offer for a while."

Citizens Memorial's patient portal differs from Google Health or HealthVault in that it gives patients the ability to interact with their provider through secure messaging, prescription refill requests and online bill payment. However, the portal doesn't allow patients to include information from other hospitals, pharmacies or clinics.

Currently, there are 500 patients using Google Health at Citizens Memorial and 1,800 patients using the patient portal. Although the portal is separate from the PHR, it's directly connected to the EHR. When a patient sends a secure message to a provider, "that becomes a message in your EHR just as if the patient called and the physician took that call and documented it," says McColm.

A push for PHRs

Sisters of Mercy uses a tethered model, where the PHR is connected to its EHR, branded as MyMercy. The PHR began as a pilot demonstration in 2009 when the organization allowed clinical data to flow into the PHR system for a full year.

Through MyMercy, patients can view their clinical information and input additional notations. However, patients' notations don't go into the clinical record where the physician could see it. Rather, the notations are a means of patients engaging in their own care, Davis says. For example, a patient cannot actively change his or her medication list in MyMercy and have those data get filtered into his or her EHR.

Sisters of Mercy is beginning to pilot integration of home devices into their EHR. This includes "scales for patients with congestive heart failure and glucometers for diabetics where the measurements taken by patients using these devices at home are uploaded into an area of the EHR where patient recorded information is stored separately from lab results out of our own lab system," Davis says. These data will have decision support tools in place to help physicians, nurses and case managers monitor patient progress and contact them to come in for an office visit as necessary.

And patients appreciate the PHR because they find it useful for viewing lab results and requesting appointments online, says Davis, who adds it has opened his eyes to the siloed nature of clinical data. "In MyMercy, I found surgical history of mine as a patient that had not been entered into the EHR," he says. "A PHR gets patients more involved in their healthcare."

Know your users

Practitioners who might be thinking of plunging into PHRs should do their homework first, says William Albert, PhD, director at the Design & Usability Center at Bentley University in Waltham, Mass.

"There's such a pressure to develop and release in the technology industry, which results in a poor user experience, low adoption and low loyalty figures [in general]," says Albert. He suggests that caregivers understand their users' needs before developing low-fidelity PHR prototypes, and be prepared to test and refine them afterward.

Although considerable hype surrounds PHRs, there seems to be a sense that PHRs and their functionality are still developing and maturing, Drazen says. "Ultimately, a model that involves all three elements—where insurers, physicians and patients supply information to the PHR—will be where the future's heading," she concludes. "The EHR-tethered PHR will be the ultimate winner for prevailing PHR model, but it will need to connect disparate records. That's where the real action is."