For more than 60 years, personal health records have been used to capture, store and aggregate information on individuals' health, helping them make health care decisions and allowing them to actively manage their own health and health records. PHRs vary significantly, but some of the more typical products include information related to diagnosis, medication, immunizations, allergies, test results and other aspects of personal health. Other, more sophisticated Web-based PHRs allow for additional services that are more interactive, such as setting appointments, refilling prescriptions and making payments.
Unfortunately, there is no standard definition of a PHR, nor is there agreement on the common elements that should be contained within it. Also, consumers and providers have not realized the role that PHRs may play in streamlining personal health management. In addition, PHRs have a number of technical and operational challenges and, as a result, the health care industry has been slow to accept them as a common, mainstream tool.
To tackle these roadblocks, experts such as the nurse informaticists can play a critical role in the evolution and use of PHRs.
The Roles of the Nurse Informaticist
The nurse informaticist (NI) fills many roles, including educator, liaison, and developer and analyst. The NI serves a crucial role in the success of PHRs as well as the extent to which PHRs can be used by health care consumers.
The nurse informaticist as educator: Like a traditional nurse, the NI must use educator skills when teaching consumers and providers about using PHRs.
The challenges of this task are complex: On one hand, consumers do not share a single notion about the value of a PHR. On the other hand, perhaps as a result of consumer likes and dislikes, PHR developers create different specifications. The NI can help by educating patients and providers about PHRs so the tool can be used to create consistency with patient care as well as balance customization and technical aspects of systems.
NIs can instruct providers on the many differences between PHRs, including the media options. NIs also can broaden consumer understanding of the content within PHRs, and explain how to use this information to make more informed decisions. This knowledge helps ensure that consumers will not abandon their PHRs prematurely.
NIs also can help ensure data accuracy and engender trust in PHRs. As PHRs evolve toward a more integrative tool, and become arguably less personal, different individuals may contribute to them, causing some concern about the integrity of the data. Physicians surveyed about PHRs indicated that this factor causes some angst and could compromise data integrity, which is one reason trust is lacking. NIs can help circumvent this issue by identifying ways in which the NI and the PHR owner can verify the quality and integrity of the data within the PHR system. One way this can be done is by incorporating rating systems with clinical experts as well as by developing credentialing systems. Again, some caution should be implemented here since this may create less personal PHRs.
The nurse informaticist as liaison: In an era of patient-centered care, health care professionals must remain mindful that consumer education is not complete after one encounter. In other words, a single demonstration does not mean that consumers will be able to operate the PHR system accurately and efficiently and then be able to manage completely their own health care information.
Unfortunately, few consumers find PHRs patient- or consumer-centric. An expert can help them link the technology and clinical information so they can manage their health information effectively through the PHR. In addition, the NI can help clinicians and consumers exchange information — even in real-time conversations — as well as obtain access to critical decision-making information, such as research and appropriate care interventions.
The nurse informaticist as developer and analyst: It is important to analyze the data that is passed through PHRs. The NI should review the host systems' formal systems analysis and design cycle, and, most importantly, provide testing. The testing will include specific analyses, such as content and text reviews. For example, the NI should ensure that consumers know how to read test reports. If the content is not easily understandable to the consumer, it is of little value and not very personal. The NI should steer clear of complex IT and health care jargon.
Solving the challenges of interoperability will require coordinated efforts from professionals, including the NI. Many health care systems across the country are using different vendors for their information technology systems, and creating a common ground for health information exchange remains complex. The most logical way to solve this problem is through standardization.
These standards, when applied to PHRs, can help develop consumers' ownership of their health care information. PHRs can be the common link that solves some of the interoperability problems — information is in one place rather than in several health care organizations or systems. The NI can create common platforms that are embedded into PHRs and used in various systems. Controlling the vocabulary within these systems is also essential. We are beginning to see this at a national level, but more work is needed.
Implications and Driving Value
The NI can help identify the value of PHRs by highlighting how their use can contain health care costs, decrease duplicative testing, reduce medication errors and become incorporated into new incentive programs such as the Health Information Technology for Economic and Clinical Health (HITECH) Act meaningful use clause.
Cost containment: A recent study conducted in 2008 by the Center for Information Technology Leadership indicated that interoperable PHRs could save the health care industry between $13 billion and $21 billion each year. These savings can be realized by instructing consumers on how to manage their own health better rather than relying on traditional provider management.
For example, PHRs may be able to mitigate costs and reduce health care consumption by decreasing duplicative and unnecessary testing, by improving provider-patient relationships and care coordination through better communication, and by empowering patients to control as well as verify correct health data. Costs also could be reduced by inviting more patient participation in health monitoring and adverse-event investigations. In other words, when patients continually monitor their own health issues through PHRs, the result is better efficiency, coordination and earlier recognition of serious health threats.
Error reduction: Every year 1.5 million Americans will be affected by an adverse medication event, and it is estimated that 27 percent of those events are preventable. PHRs may be able to mitigate a great number of these events — from the point of writing a prescription all the way to administering medication.
One component of many PHRs is the medication list. PHRs can be programmed to contain a number of features and alerts that will contribute to and address safer care, such as drug-drug interactions, drug-allergy interactions and dosing verifications. Medication resources also can be included in PHRs to assist both provider and consumer in educational and clinical decision support.
New legislation and rulings: The final ruling of the Centers for Medicare & Medicaid Services' Office of the National Coordinator for Health Information Technology under the HITECH Act allows for a program that would award financial incentives to organizations that use electronic health records in a meaningful way. Stages II and III of the meaningful use proposal have not yet been outlined definitively, but PHRs have been proposed as one of the tools that will be identified to help drive process improvements. Today NIs are preparing organizations to meet the criteria for the meaningful use incentives. As this and other programs mature, the addition of PHRs to the process improvement toolkit also will be at the forefront of the NI's work.
The New Collaborative Care Model
With the advent of the Internet, and with consumers armed with more information than ever, health care has been undergoing a paradigm shift. The traditional "doctor-knows-best" attitude is being transformed into a collaboration between health care provider and patients and their families. This shift has emphasized the importance of individuals needing to take more personal responsibility and accountability for their health care. Certainly this shift will lead to continued changes in how the health care industry operates, including the focus on substantially improved patient care outcomes. It will be the challenge of professionals such as the NI to continue to find ways to bridge the gaps in deficiencies of health care delivery.
Thomas Piotrowski, R.N., M.S.N., N.E.-B.C., C.S.S.G.B., is the executive director of Clarity PSO, a division of Clarity Group Inc. in Chicago.