Until recently, personal health records have taken a back seat to electronic medical records as the healthcare industry continues its struggle to establish health data exchange standards. That prioritization is shifting as consumers demand a viable healthcare technology in which to store and access their personal healthcare information.
The shift is exemplified by the recently released draft Health Level 7 (HL7) guidelines for the development of PHRs. Donald Mon, vice president of practice leadership for the American Health Information Management Association, described the HL7 PHR model as the "fraternal twin" of the organization's EHR model. According to Mon, "The pairing of the two (models) provides a framework for standards-based interoperability between the consumer and the provider."
Several variables have contributed to the strong upswing in consumer interest. One is the broad usage of electronic records in other areas of consumer life such as banking. The concept of online banking, once viewed as extremely suspect in an era of identity theft, has proven to be an efficient and safe method of managing one's personal finances. Consumers are beginning to expect the same level of online service and accessibility to their personal information within the healthcare arena.
Additionally, PHRs address a growing need to have a centralized data repository for healthcare records--a need that has been brought to the forefront of Americans' sensibilities with the major disasters experienced during the past several years. A portable health record could also serve individuals' more mundane needs by providing 24x7 access to insurance claims data and coverage, pharmacy data (i.e., prescription information), laboratory results and more while traveling, changing providers or insurers, or seeing a specialist. However, PHRs are not limited to providing convenient access to healthcare data; they may also deliver quantifiable benefits in terms of improved care and oversight, reduced healthcare costs, and decreased abuse and waste of healthcare services.
Through this platform of shared healthcare information, patients embrace greater responsibility for their own care by researching healthcare concerns, tracking their health status, and leveraging this expanded access to their medical data to make appropriate, cost-effective healthcare decisions. To support this patient empowerment evolution, most PHRs supply an online health risk assessment tool, whose results are then used to define online wellness and disease management programs. Often, the patients that benefit from this 24x7 resource would normally not have received formal disease management care from their healthcare providers.
As the PHR platform matures, the patient experience will expand into the realm of continuous care with real-time alerts for prescriptions, test results and behavior flags. The PHR could flag potential drug-drug interactions based on the patient's prescription list, send email reminders to schedule screening tests or to refill prescriptions, and offer lifestyle suggestions based on the patient's healthcare status and inputted behavior (for example,, home-monitored data for blood pressure, glucose, or peak flow). This online healthcare management contributes to superior patient compliance with disease management protocols; thus, contributing to improved patient well-being, a reduction in traditional healthcare system usage and a decrease in overall healthcare costs.
With the numerous acknowledged benefits of PHRs, why is there a delay in wide-scale adoption? One major issue is that much of the information that could be centralized within PHRs currently exists within disparate, non-integrated sources. For example, medical record details, laboratory results, prescription refills, and appointment schedules would need to be provided by a patient's provider. In contrast, the insurance claims data and coverage, as well as past pharmacy data, would be available through insurers. One solution is to link the PHR with the EMR, assuming that the given patient's provider has implemented an EMR solution. However, relying on eventual EMR deployment could postpone the broad adoption of PHRs for years.
Furthermore, significant concern still exists over the ability to maintain the security and privacy of healthcare data when the data is shared among various healthcare systems. Since PHRs do not fall under HIPAA's legal protection, some vendors do not encrypt the data; consequently exposing it to theft, or in a worse-case scenario, to an outright sale of the healthcare data. In a related dilemma, healthcare providers debate how to transfer PHR information securely to another provider and how to receive equivalent information into the PHR from other providers. Providers also worry about potential liability issues that could result from the lack of process in distinguishing between patient-entered and professional- grade healthcare data in the PHR. For instance, could relying on potentially inaccurate or insufficient data inputted by patients lead to suboptimal decisions about care?
Another looming question remains: "Who will pay for the PHR?" The most popular answer is insurers. Many see them as the greatest beneficiaries thanks to reduced fraud, greater oversight and decreased management costs. Additionally, insurers would be the natural suppliers of much of the needed patient information for PHRs. In fact, several HMOs already offer PHRs to their members and promote it as a value-added customer service.
Employers, facing runaway healthcare costs are also embracing PHRs. Dossia, a non-profit consortium, which now includes Applied Materials, AT&T, BP America, Inc., Cardinal Health, Intel Corporation, Pitney Bowes Inc., sanofi-aventis and Wal-Mart, is creating a Web-based PHR that will enable its 5 million employees and their dependents as well as retirees to gain access to their personal health data. Dossia plans a limited roll out of this benefit in late 2007.
Other potential providers of PHRs include hospitals (with links to EMRs and laboratory systems), physicians and large employers. Although some hospitals and employers have embraced this role, physicians have shied away from this added cost burden that offers little financial incentive.
Vendors have historically driven the development of PHRs, but overall, have not been profitable business ventures given that none of the stakeholders wish to pay for the PHR solution. Moreover, vendors are typically not able to offer seamless integration to the various EMRs and laboratory systems due to the lack of industry standards for data exchange.
Given the significant barriers that exist, why should we push for PHR implementation at this time? Because every step in furthering our understanding of the types of individuals that use PHRs, which functions they find most valuable, and which quantitative and qualitative behaviors result from PHR usage, will aid in the development of future PHRs. These baby steps will help us to establish best practices for privacy issues and secure data transactions - laying a rock-solid foundation for the future of online healthcare management and delivery.
Jodi Amendola is CEO of Amendola Communications, a national marketing communications firm serving the healthcare and e-healthcare industry. She can be reached at Jamendola@ACmarketingPR.com.
It may be dwarfed by the massive HIMSS show, but the American Medical Informatics Association conducts a conference that offers plenty of insight into heath IT. I attended this year's event, held here in Chicago in mid-November, and came away inspired as always. AMIA is primarily attended by clinical informatics research specialists. These are the folks doing the heavy lifting of turning electronic data into usable format. Many of the topics are esoteric, such as "a rationale for parsimonious laboratory mapping by frequency."
AMIA's broader strength is the insight it offers to emerging technologies, such as what researchers dub "consumer informatics." The consumer panel examined the gulf between patients and caregivers. Presenters described a digital divide that is only in part about Web access. It is an important topic, particularly given the widespread interest in personal health records and online data sharing with patients. As Rita Kukafka pointed out, a "mistrust of the medical community" can hinder the relationship. Kukafka, a member of the department of biomedical informatics at Columbia University, described how a public health program in Harlem is attempting to bridge the gap using Web technology. The project's Web site, "healthyharlem.org", offers a number of user-friendly resources and an easily navigable design. In her view, personal health records reflect a shift in patient roles. No longer mere "recipients" of services, connected patients will play a more pro-active--and responsible--role with clinicians who serve them.
Yet, the technology may be racing ahead of the public's capacity to embrace it. Consider the presentation by Catherine Smith, from the University of Wisconsin-Madison. She regaled us with her study of "obscene expression in consumer health." Smith analyzed 10,000 posts from three dozen bulletin boards that discussed health issues. Most people prefer slang or vulgarity to clinical terms. Mentioning what she labeled a "reaction against clinical terminology," Smith cited the flap around the word vajajay as an example.
Smith was far too polite to lambaste the linguistically challenged participants in medical chat rooms, so I will say what she did not. Until the American public can mature, and get past this juvenile mentality around sex, body parts, and organ system functions, we will not be meaningful participants in online personal health records, let alone in meaningful patient-physician relationships. The New York Times article quotes Carol A. Livoti, a Manhattan obstetrician and gynecologist, as saying that vajayjay and other euphemisms and slang offend her and can render women incapable of explaining their symptoms to health professionals. "I think it's terrible," Dr. Livoti said. "It's time to start calling anatomical organs by their anatomical name. We should be proud of our bodies."
Smith observed that public discussions of health issues often lead to either the "nursery or the gutter." Neither offers much value to clinical documentation. So as healthcare organizations open up their medical records to patients, they may encounter a vocabulary gap. Smith was too embarrassed to mention many of the terms she uncovered, so she listed them on a hand-out that itemized terms by clinical category, dictionary definition, and pertinent obscenity. The thought that such translation sheets would need to be part of the online dialogue with patients certainly gives pause.
AMIA Hot Quote: "If you take 10 health records each with one error and collate them, you now have one record with 10 errors."
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