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August 18, 2008

Sound the Alarm — Education, Usability Key to Accelerating PHR Adoption Rates
By Elizabeth S. Roop
For The Record
Vol. 20 No. 17 P. 12

Industry experts comment on what needs to be done to combat consumer apathy.

Consumers may say they are interested in using a personal health record (PHR), but their actions—or, more appropriately, their inactions—are sending a far different message.

A new survey by Connecting for Health and the Markle Foundation found that while 46.5% of Americans are interested in using an online PHR service, a figure that represents approximately 106 million adults, a mere 2.7% (about 6.1 million) are actually using one.

The survey, which was released in June, was the first national poll to explore consumer perceptions about PHRs in the wake of high-profile players such as Microsoft, Google, Intuit, Revolution Health, and WebMD entering the market. It found that at least 79% of the public believes using an online PHR would be beneficial to managing their health and healthcare services, yet more than 57% doesn’t keep any form of a PHR.

Of those who said they were not interested in using an online PHR service, the majority (56.8%) cited concerns over privacy and security as the primary reason. But are worries over control and safety of their health information the real reason consumers aren’t jumping on the PHR bandwagon, or is something else at play?

“The whole issue of ownership is extraordinarily challenging, as is privacy. These are very important considerations. On the other hand, I think it’s a bit overemphasized,” says Google Health Advisory Council member Robert M. Wachter, MD, chief of the division of hospital medicine, professor, and associate chair of the department of medicine at the University of California, San Francisco (UCSF) and chief of medical services at UCSF Medical Center. “As Google Health was being put together, virtually every question I was asked was about privacy. Virtually none of them were about ‘Is this a good thing and will it work?’ Privacy is important, but it’s not the only thing.”

According to a number of industry experts, the bigger obstacles to moving consumer PHR adoption beyond the early adopters, who tend to be individuals with chronic ailments and those caring for chronically ill loved ones, are awareness and a lack of enthusiasm that borders on apathy.

“The first barrier is just knowledge that they even exist,” says Nita Stella, senior vice president of product development for ActiveHealth Management. “Healthcare is notorious for not very good consumer education, so I don’t believe a lot of people really understood or knew that they had this capability or what to do with it.”

Many expect that the involvement of household names such as Microsoft (HealthVault) and Google (Google Health), both of which are designed to make PHRs more useful by providing consumers with an infrastructure to link the various sources of health information, will go a long way toward raising consumer awareness.

The mainstream attention these companies bring is critical to achieving a level of consumer-centric discourse that can foster a deeper understanding of the technology and its uses by the general public.

“We still have a problem with semantics. What the heck is a PHR anyway? Consumers still don’t really talk about it at cocktail parties. It’s not really part of the parlance yet,” says health economist and management consultant Jane Sarasohn-Kahn, founder of THINK-Health. “When Consumer Reports does an article on what is the best PHR, then I think you’re getting to the tipping point on the curve. We haven’t yet hit that.”

Reaching that tipping point is the driving force behind consumer education programs hosted by leading industry organizations such as the AHIMA that are designed to educate the general public about PHRs and how to establish and maintain them for maximum usefulness.

The AHIMA’s campaign, called “It’s HI Time, America!”, launched in January and includes national radio and television public service announcements and a documentary with real-life stories to help consumers relate to the necessity of managing their PHRs. The organization also beefed up its myPHR.com Web site, which offers a comprehensive menu of peer-reviewed PHR information and a step-by-step guide for creating a PHR with forms in English and Spanish.

“The idea that it’s possible to keep a lot of information in a small place or that you can save yourself money and time, as well as be safer if you have your information handy, I don’t think that the general population understands that. I think the general population thinks their medical information is more accessible to other providers than it really is,” says Jill Burrington-Brown, MS, RHIA, FAHIMA, manager of professional practice resources for the AHIMA. “The other thing is, in general, people have a strong river of denial running through our psyches; we don’t believe anything bad will happen to us until it does.”

That denial is also the source of some of the public’s failure to enthusiastically embrace PHRs. Unlike individuals who use PHRs to manage chronic conditions, most people simply have not had the kind of exposure to the healthcare system that would drive home the importance of keeping a personal, up-to-date account of health information. As a result, even those who may want to use a PHR find it difficult to justify the time it takes to set it up, maintain it, and use it in a meaningful way.

“The basic problem is that most people don’t know or don’t care much about their health or their medical record. Most people are healthy and have occasional interactions with the doctor, so it’s not that big of a deal,” says Matthew Holt, founder and author of The Health Care Blog and cofounder of Health 2.0. “Nobody has figured out what a PHR should do, so there just hasn’t been a useful creation of the thing that people need.”

Wendy Angst, general manager of CapMed, concurs: “Consumers, by and large, don’t have a strong interest in or desire to spend a lot of time self-entering information … so I would say that barrier No. 1 is getting data into the health record.”

One solution is to develop incentives to encourage consumers to take a more proactive role in their healthcare, such as offering lower premiums to those who take action to improve their health and wellness.

“Until consumers decide to get real about health management, we’re destined for spotty updates, not universal adoption,” says Sarasohn-Kahn. “We are not a nation that is going to adopt a ‘nanny state’ stance on this. We won’t legislate that consumers must adopt PHRs. We’re more of a ‘nudge nation’ where, as a culture, we provide incentives for people to do that.”

But the blame cannot be placed entirely at the feet of unmotivated consumers. As many point out, the highly fragmented nature of healthcare makes it complicated for the general public to collect the medical information necessary to derive the maximum benefits from their PHR.

“If the personal health record is going to take off, there has to be widespread links between the patient and all their sources of health information,” Wachter says. “The problem is that ... care is extraordinarily fragmented and, as a patient, your data live in so many silos that the act of trying to bring it together in a single record is somewhat heroic. On the other hand, that creates a tremendous value proposition for the PHR, but it’s a real pain to get it done.”

What’s more, even when PHRs are populated in the form of claims data from insurers or through links to provider records, the average consumer is unlikely to know exactly what to do with the information.

“They don’t know what to look for. They don’t know what is going to work for them,” says Burrington-Brown. “The whole idea of understanding [their health information] and helping people find it and put it into a PHR, that is an area we should really be keeping an eye on.”

Contributing to the lack of enthusiasm among the general public has been a lack of features that serve to engage consumers in the PHR by offering reasons to keep them current and incorporate them into their daily lives.

“There hasn’t been anything very useful you could do with the data in your PHR, even if you cared. That is actually changing quite fast. Google Health has put a stake in the ground here,” says Holt.

That stake is to create a consumer-friendly environment with PHRs that also facilitate links to other applications and data sources consumers want and need to make PHRs useful additions to their everyday lives.

Google and Microsoft in particular are able to come at the problem primarily from a consumer perspective rather than attempting to retrofit healthcare solutions and practices to suit the general public’s needs.

“Google often begins projects by thinking about how to create a scaffolding upon which a lot of other terrific things will be built. When you look at Google Health today, it’s better seen as a starting place than a finished product,” says Wachter. “Ultimately, as this comes to fruition, patients will be able to have their Google Health page link to all the places where they have other health information. Google Health will also provide many other useful functions, as well as the best search functions for all things health.”

PHR vendors are also working to provide consumers with applications that do more than just aggregate data by incorporating features such as messaging, alerts, and search functions designed to keep the consumer engaged in the technology and make it a part of their daily lives.

CapMed, for example, launched icePHR Mobile, an in-case-of-emergency PHR technology that gives consumers access to important medical information such as allergies, immunization records, and emergency contacts through their mobile phones. The company has also bundled its PHR offerings with StayWell Health Management’s health management solutions, including health assessment tools, wellness coaching, health behavior change programs, and health information.

“From our standpoint, what we’re continually stressing with our applications is that the role of the personal health record is personalizing the information for the individual and making it actionable,” says Angst.

ActiveHealth has also enhanced its PHR offering, ActivePHR, to include real-time clinical alerts, reminders, integration with health management programs, and translation to Spanish. The application also offers consumers an integrated health assessment tool to help them learn about health risks, goals, and specific ways to improve their health.

“We need to change the definition of the PHR to be not just a repository or a conglomeration of pages thrown together but to something that is alerting the user and providing guidance and valuable information,” says Stella.

Even vendors that have traditionally focused on electronic medical record (EMR) applications have begun addressing the need to increase patient involvement in their healthcare by improving communications between patients and providers and working with third-party PHR applications to ensure the information is both useful and usable.

“We recognize that … our goal as a medical record and practice management vendor is more centric to the provider and practice to help them … improve healthcare and reduce costs,” says Robert Barker, manager of interoperability and standards at NextGen Healthcare. “When you get to the PHR industry, the main focus seems to be on the patients’ involvement in their healthcare, whereas the EMR vendors tend to be focused on the clinician aspect. The concept of empowering the patient to be more involved in their own healthcare, with tools that make it possible, is shared. The challenge is coming up with how to merge these two industries that have two different perspectives.”

To that end, NextGen offers NextMD, a patient-provider portal that can be made available through a practice’s Web site to facilitate communications with patients. Features include the ability for patients to request or change appointments, request prescription renewals, update demographic or insurance information, complete enrollment forms, provide daily readings for inclusion in health and disease management plans, and conduct online consultations.

NextGen’s ChartMail also integrates patient information with third-party PHR applications to aggregate the clinical data from various sources, including information input by the patient.

While efforts to educate consumers on using PHRs and incorporate features that encourage regular interactions with the technology are seen as progress, these advances fail to address a significant underlying barrier: the slow adoption of EMRs among physicians.

“It’s a bit chicken and egg because they’re talking about what comes first, the clinician’s electronic health record or the PHR, from the consumer’s point of view,” says Sarasohn-Kahn.

The heart of the problem is that the system is fragmented to the point where some physicians have EMRs while others rely heavily on paper records. Most consumers, meanwhile, have nothing that even remotely resembles a PHR, or they keep their basic information in a spreadsheet or written down somewhere.

Without sufficient adoption of both EMRs and PHRs, it will be impossible to achieve the level of integration necessary for “the consumer and the clinician to be singing out of the same hymnal, with some integration between the electronic health records of the clinician and the patient view of that, which would be married to their own PHR over which they have 100% control,” says Sarasohn-Kahn. “That’s the nirvana, the integration and nexus of those two. When we proponents of PHRs talk about this, we’re talking about a nirvana that doesn’t yet exist but that we envision and highly value.”

— Elizabeth S. Roop is a Tampa, Fla.-based freelance writer specializing in healthcare and HIT.


Physicians and the PHR
No discussion of personal health record (PHR) adoption would be complete without examining the relationship between these tools and physicians.

Because of the high level of trust consumers place in their physicians, many believe that they are in the best position to educate their patients on the need for and use of PHRs. And while that may be true, there is a catch: Many physicians, particularly those who have not embraced electronic medical records (EMRs), need to be educated themselves on PHRs and how to integrate them into their daily practice routines.

“The focus on educating consumers on PHRs is really getting back to the No. 1 thing we need to do, which is educate providers on PHRs. If I wasn’t working in a digital office, I wouldn’t know much about PHRs from a clinician standpoint,” says Stasia Kahn, MD, who practices internal medicine and serves as vice president of the Northern Illinois Physicians for Connectivity, a regional health information organization (RHIO). “What about doctors who are in the paper world? Can they even grasp that concept of accepting electronic data from their patient or sending electronic data to their patients?”

Kahn notes that it’s not just the low adoption rate of EMRs that prevents physicians from embracing their role as PHR educators; it is also the lack of a clinician-centric business model for incorporating PHRs into their practices in a manner that does not disrupt workflow or negatively impact revenue generation.

Exacerbating the problem is a lack of medical informatics education delivered in a way that accommodates the hectic schedules of practicing physicians.

“It gets back to that the physicians need to be educated. I think it should be one of the goals of a RHIO to educate the provider community they serve on medical informatics,” she says. “There are ways to reach out to physicians, but it still gets down to the fact that they are very busy. They have limited time. … You have to [educate] them in a way that’s not intrusive with their other activities.”

Robert Barker, manager of interoperability and standards for NextGen Healthcare, agrees that physicians can have a significant impact on consumer adoption of PHRs. However, the PHR community needs to do a better job of demonstrating the technology’s clinical value if it expects physicians to become the torchbearers for PHR adoption. Barker suggests that gathering empirical data to quantifiably measure improvements for patients that utilized a PHR product would be a good first step.

“Doctors are smart people. They aren’t going to change for the sake of change. They want to see the studies done, the quantitative data from the medical community—and not from people who are trying to sell them,” he says. “I would put part of this on the PHR community to come up with this data and go to the physicians.”