Electronic personal health records (PHRs) are receiving increasing recognition in healthcare today. However, the degree to which consumers and providers will use these PHRs depends on how helpful they find them. At the July, 2008 Summer Institute in Nursing Informatics, several speakers emphasized that a nursing viewpoint is essential for making PHRs truly useful to consumers (Thede, 2008a). When PHRs were first conceptualized, the goal was to provide consumers with a view of their medical record. This goal has now expanded to providing both a view of one’s medical record and also services and tools that make the PHR useful in promoting a healthy lifestyle.

Although there are several definitions of a PHR, the official definition, provided by the National Alliance for Health Information Technology (NAHIT), describes the PHR as “an electronic record of health-related information on an individual that conforms to nationally recognized interoperability standards and that can be drawn from multiple sources while being managed, shared and controlled by the individual” (National Alliance for Health Information Technology, 2008). Interest is growing in PHRs; yet in most cases the responsibility for keeping these health records, especially when multiple providers are involved in contributing to the records, rests with the individual. The following two factors contribute to the fact that less than 50% of our United States (U.S.) population can refer to one source for information regarding their healthcare: (a) the consumer bears the burden of maintaining these records, and (b) healthcare providers are currently unable to merge information contributed to the records (NAHIT, 2008). The still-limited percentage of the U.S. population maintaining their own medical record is presented in the Figure below.

Types of Personal Health Records

There are basically three types of PHRs: (a) institution-centered PHRs, in which consumers have access to specified portions of their healthcare records that are maintained by providers of a given healthcare agency or a consumer’s insurance company, (b) self-maintained PHRs that are sometimes maintained online, and (c) a linked record that can import information from different sources, usually oneself and/or a healthcare agency.

In institution-supported PHRs, content may include test results and/or offer services such as the ability to refill a prescription or make an appointment. In some cases, clients may be allowed to enter information into the clinical record; however at this point most do not allow clients to enter information.

In the self-maintained PHRs, consumers have the responsibility of entering their information. When consumers create their own paper or computer-based record, the content included, and its usefulness to either the consumer or the healthcare provider is directly dependent on the knowledge level of the consumer. Self-maintained, online PHRs, like institution-centered PHRs, vary in their services and the information they contain. Some provide the ability for healthcare professionals to access the online record when the consumer provides a personal identification number (PIN), while others allow only users to print their records. With most of these services the focus remains on the clinical use of healthcare information. The challenges associated with self-created records include the need for consumers to obtain, remember, and enter this information, and their need to understand the information enough to do this accurately. Those who use an online PHR are encouraged to be aware of the privacy policy of the group that maintains their PHR. An independent review of privacy policies of online PHRs found that 97% of the policies reviewed met less than half of the standard, online-record criteria, such as readability and details of how information will be shared (Lecker, 2007).

The third type, the linked record, combines the patient-maintained with the institutional model and often adds more functionality. Under this model consumers themselves can enter information. However, information can also be imported from other sources, such as pharmacies, healthcare providers, and even devices such as in-home blood pressure monitors. Google Health and Microsoft Health Vault are examples of linked PHRs, although they, too, vary in the services they offer.

Privacy and Management of PHRs

What is of concern to many is that records maintained outside of healthcare agencies are not covered by the Health Insurance Portability and Accountability Act (HIPAA). A recent post by Zeman (2008) in a blog titled, “Google Says Privacy Doesn't Exist, Get Used To Everyone Knowing Everything About You,” discussed the right of Google to post images of a house against the will of the house owner. This post reported that in court Google stated “...complete privacy simply doesn't exist in today's world....” It can only be hoped that Google does not have the same belief about privacy when it comes to the PHR, and that it realizes any lapse in PHR privacy would put a blot on this service that would be hard to overcome.

Another concern relates to the question of who should manage a PHRs. The Markle Foundation Connecting for Health (2003) reported a survey finding indicating that although people trusted their physician to manage their PHR, they did not trust their insurance company, their employer, or the government. This survey was conducted before the birth of either Microsoft’s or Google’s PHR. Physicians are mandated by HIPAA regulations to maintain privacy. However, today, most people have more than one physician. Multiple physicians for one client would make it more difficult for physicians to maintain a record, especially if they belong to different groups. [1]

Designing PHRS

Nursing needs to be in the forefront of designing PHRs for consumers. Nurses provide the largest portion of direct patient care and have the ability to answer questions in a manner that gives consumers confidence in their actions. When PHRs are designed, the first item that needs to be addressed is the identification of the target audience for the PHR. Clinicians need a design that allows information to be viewed in a manner meaningful to them. Yet consumers, whether an adult, a teen with a chronic disease, a parent, or a caretaker, need a different view of the data.[2]

It is important to address the varying levels of consumer ‘health literacy,’ i.e., the ability of the consumer, and even healthcare providers to understand and process health information. Given that personalizing the PHR to each individual situation is not economically feasible, a general format needs to be established, along with the ability to “drill down,” for more details in a way that meets the needs of persons at both ends of the health literacy scale. For example, it may be necessary to add links to definitions of words and links that present information about a topic at different levels, ranging from very basic levels to very complex levels.

It is also important to consider both what consumers want to learn from their PHR and what healthcare professionals believe they need to learn. What we as healthcare professionals think they need may not be what consumers want or will use. A method of organizing the data so that it is meaningful to the consumer and the provider needs to be established. It is likely that instead of the body-systems organization from which healthcare professionals operate, consumers will want an information view that helps them understand what they need to do based on the data. For example, if a lab report shows an abnormal value, consumers will want the design to indicate whether they need to modify their lifestyle, have further tests, or change a dosage of a medication. Nurses can play an important role in influencing these design decisions.

The ability to interface home or agency monitoring devices, such as stethoscopes, glucometers, or sphygmomanometers, with an electronic record presents many opportunities to provide helpful information to both the provider and the consumer. The data view that the healthcare professional needs, and the one that is most useful to the consumer will probably differ, but both need to be able to describe the action(s) to take as a result of the data generated. Brennan (2008) stated that a PHR should be “actionable,” which means that the PHR needs to provide the user with actions, not just information. For example, if a consumer is taking an antibiotic four times a day, but forgets one dose what should he or she do—skip the dose or double up? At discharge, people are often given various medications to take at differing times and with sometimes conflicting instructions, such as take on an empty stomach and avoid eating for two hours after taking. Even when the instructions are written down, organizing one’s life around these instructions is often difficult. A well designed PHR could be used to set up a personal medication organizer that takes into account a person’s preferences and habits, thus making it a truly useful tool. Working with consumers and providers at various levels of health literacy will enable nurses to establish interface and data-view designs that will meet the needs of both the consumer and the provider.

Another consideration in creating a PHR regards the source and nature of the information desired. If the PHR is linked to a searchable-information database, nurses can help to determine how this information would be best indexed. Most electronic bibliographies searched by healthcare professionals use professional lexicons. Consumers, however, are accustomed to searching using key words as they do with Web search tools. These differences will need to be accommodated if the information needed by each group is to be found. Nurses, who have listened to the terms that patients use when asking questions or trying to assimilate information, can be very helpful in deciding what keywords will be most helpful for consumers. They can also help in assigning levels of complexity to the various links, using terms, such as “basic,” and “more information,” that do not make the consumer feel as though they lack intelligence.

Conclusion

When thoughtfully created and managed a PHR can be a valuable tool. To be truly useful a PHR needs to move beyond the view of “medical record” and become consumer focused. PHRs need to provide tools and services to help both healthcare providers and consumers make health-related decisions. Nurses, who have always taken a more patient-centered view, are in a prime position to influence this type of PHR. They can help design PHRs so that varying types of information can be accessed depending on the interest of both consumers and providers. Nurses can help to decide what information will be helpful, what level it should be at, and what information the consumer and/or provider will retain or understand.

PHRs hold great promise. Questions remain, however, regarding how they should be designed and who should manage them. A full PHR that accommodates healthcare data from all sources is not possible until the electronic health record, as described in a recent OJIN Nursing Informatics  column (Thede, 2008b) is implemented. It is not, however, too early to start planning how your agency can implement a PHR for your clients. Nurses provide 97% of direct patient care (Simpson, 2008). They can, and should participate in making PHRs fulfill this promise. What plans does your agency have with regard to PHRs? Is nursing in your agency a viable component of these plans?

Author

Linda Thede, PhD, RN-BC 
lqthede@roadrunner.com

Linda Thede is currently the editor of CIN Plus, a 12 page insert in CIN: Computers, Informatics, Nursing. She has served as course mentor for informatics for St. Joseph’s College, Excelsior College, and Thomas Edison College. Prior to this she was an Assistant Professor in the School of Nursing at Kent State University where she participated in numerous University Committees studying and implementing computer uses and distance education. At Kent she taught nursing informatics and assisted the faculty in the use of technology for many uses including databases. She was a cofounder of the Informatics Nurses of Ohio, and served as its first president. She is certified in Informatics and has published a book, Informatics and Nursing, which is in its second edition. She founded the second listserv used in nursing, Gradnrse, which she merged with NurseRes, a listserv that she started with the support of the Midwest Nursing Research Society.