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October 26, 2009

The PHR — Moving Consumers From Pawns to Kings
By Elizabeth S. Roop
For The Record
Vol. 21 No. 20 P. 14

A new book calls for a revamped patient-provider paradigm and the creation of a transparent system in which consumers rule the roost.

PHR proponents have spent years working to carve out a niche in the national health information network for these patient-controlled information resources. More often than not, their efforts were met with disinterest or resistance by stakeholder groups that place a higher value on provider-facing HIT to drive information sharing as the means by which to improve the quality of and access to healthcare.

But the days of underestimating PHRs’ potential to aid in transforming the nation’s healthcare system may be coming to an end. A heightened focus on consumer empowerment and the current lack of a viable solution for delivering a single source of comprehensive patient information is driving a new interest in the PHR as a tool for change.

“If you look at the information in the [healthcare] system, it revolves around the patient. One of the key insights that I have is that no institution can solve the problem of delivering complete information at the point of care because patients do go to various providers. You have to build the infrastructure around the patient, and that is what PHRs do,” says William A. Yasnoff, MD, PhD, FACMI, founder and managing partner of the Virginia-based health information infrastructure consulting firm NHII Advisors and Health and Human Services’ former senior advisor for national health information infrastructure.

The PHR’s role in the future of healthcare is the subject of Personal Health Records: The Essential Missing Element in 21st Century Healthcare, which was coauthored by Yasnoff; Holly Miller, MD, MBA, FHIMSS; and Howard Burde, Esq. Published by HIMSS, the book examines the issues related to the adoption and use of PHRs, including privacy, confidentiality, security, public trust and applicable laws from the consumer, and provider and payer perspectives.

Perhaps the most valuable discussions center around the potential PHRs hold for advancing a new patient-provider paradigm, as well as innovative uses such as predictive modeling, social networking, and creating the transparency patients need to make truly educated choices about their providers and care.

The authors also go beyond high-level discussions to provide actionable information such as implementation guidelines and project planning, as well as business and sustainability models designed to turn theory into reality.

“My sense is that there is skepticism because [the PHRs] that are available tend not to be used and that may simply be a reflection of reality, that people don’t want them,” says Burde, who is principal of Howard Burde Health Law, LLC, an HIT law firm based in Wayne, Pa. “Or it may be that we have not educated the public well on why they should consider [the PHR] an essential component of healthcare or provided them with really useful PHRs.”

The PHR of the Future
Driven by evolving market forces, the authors envision a PHR that goes well beyond simply serving as a repository of an individual’s health information. The PHR of the future would also provide the tools and data from multiple sources required for patients to become true partners in the management and direction of their care.

For example, most patients select a tertiary care provider based on geographic proximity, the recommendation of their primary care physician, or the list of in-network facilities provided by their insurance coverage. However, if data such as outcomes and case volume information—much of which is already collected and published by various government and private organizations—was made available through PHRs, it would enable consumers to select providers based on quality, experience, and success rates.

“Being aware of the quality of the clinicians one is seeing is very important. More and more, there is an effort to require reporting about numbers of cases, outcomes, etc,” says Miller, chief medical officer for MedAllies, a health information service provider based in Fishkill, N.Y. “This information is critical. People have a right to access it. … It’s also very important that the language and format used be something that is very accessible for the average individual.”

The PHR of the future would also facilitate the behavioral changes and personal responsibility that are the cornerstones of a healthcare model based on wellness and prevention. For example, PHRs could do the following:

• deliver the tools and real-time support strategies to assist consumers in changing health behaviors, including mapping predicted health outcomes based on those behaviors for improved accountability;

• enable the use of deidentified clinical and behavioral data for epidemiological studies and predictive modeling that would advance the practice of personalized medicine;

• allow individuals to construct social networks and/or communities to support their efforts at long-term behavioral change; and

• enable remote monitoring by physicians based on information that is automatically and regularly updated via links with devices such as scales and blood pressure gauges.

Indeed, the possibilities of what PHRs have to offer consumers are limitless. But despite surveys that indicate high consumer interest in PHRs, adoption remains low. If people aren’t using today’s basic PHRs, why would one think they would use more complex versions in the future?

The answer lies in the delivery of features and functionality that consumers want and need. It also requires eliminating at least some of the hands-on setup that can cause even the most motivated consumer to procrastinate when it comes to getting started with a PHR.

“Adults especially tend to do things as they need to. We don’t have the liberty of time to explore and try things. We do our taxes when it’s time to do our taxes and not six months early. We could, but we don’t,” says Burde. “The reason that most people don’t use their PHR ahead of time is that they just don’t think about it until they need it. … The best possible approach, if PHRs are to be part of the larger solution, would be to give people prepopulated PHRs.”

He goes on to say that if PHRs came prepopulated with the most comprehensive data available, which today is often claims data from payers, it would provide consumers with a less daunting starting point. From there, the key is to provide the tools that will allow them to incorporate PHRs into more aspects of their daily lives rather than only when they fall ill.

“Ultimately, the more well-organized and accessible information that is in a PHR, the more useful it can be. There is no question about that,” Burde says. “Any tool that gives people more information about their own health and more opportunities to learn about it or share information with their providers is useful. … My view is that even partial information is useful. You don’t need to have a fully functioning PHR to have a useful PHR, as long as it’s accurate. You don’t want to let perfect be the enemy of good.”

A Sustainable Model
Encouraging widespread adoption is just one of several challenges facing future PHRs. In fact, Yasnoff suggests that consumer adoption, as well as technology and even privacy and security issues, is the least of the challenges preventing PHRs from making a maximum impact, although certainly improvements can be made in all three areas.

Rather, he says, the biggest roadblocks are coming from healthcare stakeholders, including clinicians, provider organizations, and health plans. For the most part, those obstacles stem from the ongoing debate over ownership of patient information—a debate Yasnoff says was put to rest a long time ago in favor of the patient.

“There is a perception that the electronic information they have is very valuable, which it is. But the corollary is that they’ll make money from it, and that’s not true,” says Yasnoff. “We’ve already had the public policy debate [about information ownership]. … You may not hold onto your records, but they clearly belong to you. But when the information became electronic, everyone forgot that. In part, they forgot it because they spent a lot of money making it electronic. Why should they just give it away? I have some sympathy for that, but the fact remains that the information belongs to the patient. The idea that healthcare providers can keep the information wherever it was created, then scoop it up electronically in real time, combine it all, and deliver it at the point of care is magical thinking.”

Instead of debates over information ownership, retention, and monetization, Yasnoff says the focus must be on constructing a sustainable business model, as follows, that would support the PHR by addressing the overarching problems with a national health infrastructure:

• converting all patient information to electronic forms;

• creating a repository for that data where patients can access and control them; and

• generating sufficient revenues to cover the start-up and ongoing costs related to converting and storing electronic data.

The first step is ensuring the completeness of the data available electronically by providing all physicians with at least basic EMRs. The second is to establish a repository for the information gathered by those EMRs and other sources of patient information, ideally a centralized architecture such as a health record bank where the information could be controlled by the patient using their PHR.

Thus, the business model must generate revenues sufficient to cover the costs of both the EMRs and the repository—costs that are lower than most would imagine given that off-the-shelf, Internet-accessible EMRs cost as little as $5,000 per year. In fact, for a community of 1 million, Yasnoff estimates that the cost for both the EMRs and the repository would be just $16 per person per year.

Revenues could be generated in one of three ways: appropriate advertising to consumers, who would have the option to opt out of receiving ads for a low annual fee; annual subscriptions for consumers to receive alerts via their PHRs that could range from automatic notifications when a loved one’s record has been accessed by an emergency department to medication prompts and annual check-up and screening reminders; and access fees charged to researchers, public health agencies, quality assurance, etc to utilize the data within the repository for research, with appropriate patient consent.

“The cool thing about this business model is that there isn’t a word in it about healthcare cost savings. That is not to say that I don’t think savings are important or that I don’t believe this will save healthcare costs, but this business model doesn’t depend on that. I don’t have to convince anyone that savings will occur in order to get them to pay in advance,” says Yasnoff. “It all depends upon delivering compelling value to the consumers … and physicians, who are the key folks in the healthcare system.”

The Right Tools at the Right Time
Whatever form the PHR of the future ultimately takes, the true value will come from its ability to encourage consumers to accept personal responsibility for their health behaviors and its role in supporting a paradigm shift away from a paternalistic patient-physician relationship to one based on consumer empowerment.

“I feel the potential for healthcare transformation is so strong, and the potential for healthcare consumers to be empowered is tremendous. By using the tools in a PHR, we can encourage consumer involvement and, in some ways, leadership in both their care, as well as their health and wellness behaviors. We’re very early on in this arena, and we will see some wonderful developments,” says Miller. “I think so much of the way we approach medicine is really about when you’re sick rather than maintaining wellness. I do believe that’s the fundamental element in healthcare transformation—to focus on the whole person, on wellness and assuring quality of care.”

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


Markle Foundation Proposes Framework for Improved Consumer Access
Much like the authors of Personal Health Records: The Essential Missing Element in 21st Century Healthcare, the Markle Foundation’s Connecting for Health considers expanding consumer access to information tools that enable them to better manage their health to be critical to transforming the nation’s healthcare system.

Earlier this year, the organization’s Connecting for Health collaborative issued its Common Framework for Networked Personal Health Information, a combination of technology and policy approaches for privacy and security, so that consumers can obtain copies of their health information and authorize the sharing of that information in a trustworthy electronic environment.

The framework’s end goal is to increase consumer adoption of PHRs and other similar applications by establishing best practices to improve access and protect privacy.

“Our view is that for these applications to take off in the 21st century, they have to be networked to important information, as well as other applications and services,” says Josh Lemieux, the Markle Foundation’s director of personal health technology.

Lemieux sees the greatest obstacles to advancing PHR adoption as a combination of factors, including a limited expectation among consumers that they will have meaningful access to and control over their health information and a limited view of consumers as information brokers among the healthcare industry.

“Many healthcare systems and services have approached information and data as things that they hold rather than commodities that they share,” Lemieux says. “But it’s only through the sharing of information that services can be most helpful to consumers because, in most cases, no one system has all the information necessary to help a consumer make good decisions or maintain their health in an optimal way. The fact that the economics of the U.S. healthcare sector haven’t really embraced the sharing of information affects both the markets for the EMRs maintained by providers and PHRs maintained by consumers. Without a demand for this information, these applications will be limited in their growth potential.”

What is required is developing a business case for investing in the integration across systems to facilitate easier sharing of information with consumers. Rewarding improved coordination of care will ultimately lead to the development of better ways to capture, analyze, and share information to benefit consumers.

According to Lemieux, this ultimately will lead to an environment that will enable consumers to do the following:

• have a rich variety of tools to help make health decisions for selecting providers, health plans, pharmacies, treatments, etc;

• be engaged in and empowered with new communication and decision tools that make them active partners in improving their health;

• be viewed as important participants and contributors to the network;

• benefit from an open, trusted network that supports a variety of applications, services, and tools available to them for use in improving their health and/or healthcare;

• be included in participatory models for research, postmarket surveillance efforts, quality improvement initiatives, and clinical trials; and

• have more efficient and satisfying means to communicate with clinicians.

“The consumer role is going to expand just as it has in other sectors. It doesn’t mean that consumers will be taking over provider systems. They’ll be working with electronic copies of the same information in applications that are more accessible and useful to them as consumers. There’s no need to fixate on ownership of information. What we need to focus on is providing the opportunity and a sound, safe policy environment that protects privacy and security for people to share that information for better, safer, more efficient care,” says Lemieux.

There also needs to be a common understanding of what information is available for sharing and the expectation of privacy and security to ensure it is trusted by both consumers and medical professionals.

Most importantly, there must be an acknowledgement that the PHR is fundamentally different than a provider’s EHR. While both require basic core principles guiding privacy and security, the specific policies and practices must be adapted to address the different contexts in which the information is being used. That was the goal of the collaborative’s framework.

“If a consumer is logging into a personal health record, it’s fundamentally different than a provider logging into an enterprise EHR. The policies and practices need to be adopted to fit those different contexts and ensure proper authentication, security, interface, and access in those contexts,” says Lemieux. “One-size-fits-all is not appropriate when it comes to specific practices, although certainly all health information technology should be guided by basic core principles. It should start with the same base principles, then derive practices that are appropriate to fit the needs of the technology users.”