by Kyungsook Kim, MS, BA, RN
& Dr. Eun-shim Nahm
Kim, K. & Nahm, E. (2012). Benefits of and barriers to the use of personal health records (PHR) for health management among adults. Online Journal of Nursing Informatics (OJNI), 16 (3), Available at http://ojni.org/issues/?p=1995
The purpose of this review is to synthesize the current literature on the benefits of and the barriers to PHRs use for health management by adults in the community setting. Online database searches were performed through CINAHL, MEDLINE, PubMed, and ACM Digital Library. A hand search was conducted of study references. Twenty-eight articles were included in the review. PHRs have the potential to enhance consumer empowerment, consumer-provider communication, access to data in emergencies, chronic disease management, and behavioral change. Challenges to the use of PHRs include data accuracy, data privacy and security, and digital divide and literacy issues. From this literature review, integrated PHR-EHR is preferred. As a result of the continuing research on PHR, community adults will be able to contribute to their quality of life through PHR utilization.
Impact of PHRs, benefits of PHRs, barriers to PHRs, community adults, consumer health informatics
Personal health records (PHRs) are consumer-centric tools that individuals can use to communicate with their health care providers to manage their own health and health care (Healthcare Information Management and Systems Society [HIMSS], 2007). Personal health records are perceived as an important element in reducing medical error and increasing quality of care by bringing efficiency and accessibility to the health care system (Markle Foundation, 2005).
By integrating the electronic health record (EHR), computerized decision support (Osheroff et al., 2007), and telehealth (Johnston et al., 2007), the PHR can contribute to better quality and efficiency in health care management (Tang, Ash, Bates, Overhage, & Sands, 2006). Personal health records may also provide improvement in consumer adherence to medical intervention, satisfaction, and empowerment by making medical records accessible to them (Archer, Fevrier-Thomas, Lokker, McKibbon, & Straus, 2011). Furthermore, they can also support the special needs or aspects of care characteristic of specific populations of consumers, such as those with chronic conditions (Dorr et al., 2007) or the elderly and their caregivers (Archer et al., 2011).
The most recent national survey by the California Healthcare Foundation (CHCF, 2010) found that PHRs are still not widely used. Users of PHRs were predominantly under age 45, educated, higher income, and males. The survey also found that low-income, chronically ill patients with less education found that they knew more about their health care as a result of using PHRs.
Although the emerging literature suggests that PHRs may have the potential to contribute significantly to individuals’ health management, the rates of PHRs use among age 45 and over is still low compared to adults under age 45 (CHCF, 2010). The purpose of this literature review is to synthesize the current information on the benefits of and the barriers to the use of PHRs for health management among adults age 45 and over in the community setting.
Definitions of PHRs are evolving with advances in health information technologies. The National Alliance for Health Information Technology (NAHIT, 2008)defined a 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” (p. 6).
Personal health records are tools that manage data to help consumers become more proactive participants in their health management. Currently, three types of PHRs have become available (HIMSS, 2007). These include the stand-alone formats (e.g., PC, USB drive), Web-based formats (e.g., Microsoft HealthVault, Dossia consortium), and integrated PHRs with EHRs (e.g., My HealtheVet of the U.S. Department of Veterans Affairs) (American Health Information Management Association [AHIMA], 2005, 2010).
Stand-alone formats are used when consumers store health information on their personal computers. They lack the ability to exchange information easily between consumers and healthcare providers. Web-based formats are maintained by third parties which allow consumers to maintain their information in private online accounts, which they access by their own login ID and password. They may include secure e-mail, document sharing, and video-conferencing for home consultations (AHIMA, 2010; HIMSS, 2007). A PHR integrated with an EHR can consolidate the data entered by a consumer with the data in the provider’s EHR to offer both the consumer and the provider a more complete view of relevant health information (National Institutes of Health [NIH], 2006).
Online database literature searches were performed through Cumulative Index to Nursing and Allied Health Literature (CINAHL), Medical Literature Analysis and Retrieval System Online (MEDLINE; 1948 to current with daily update), PubMed, and the Association for Computing Machinery (ACM) Digital Library. The search terms employed were “impact or benefits of PHRs,” “barriers to PHRs,” “community adults,” and “consumer health informatics.” A hand search was conducted of study references. The search was limited to: (1) English, (2) peer-reviewed journals, (3) adults (age 45 and over), and (4) publication year (January 2000 to December 2011). Figure 1 shows the literature selection procedure. Screening identified 564 papers, of which 70 articles were retained for detailed review. Twenty-eight articles were included in this review.
Figure 1. Flow Diagram for Literature Selection Process
Table 1 summarizes the 28 articles. In all, 10 (36%) were surveys, 8 (29%) were qualitative studies, 4 (14%) were descriptive studies, 2 (7%) were randomized controlled trials (RCTs), and the remaining were quantitative, pilot, prospective cohort, or mixed method studies. Benefits of PHRs use include empowerment of consumers, consumer-provider communication, access to patient data in emergencies, chronic disease management, and behavioral change. Barriers to PHRs use include data accuracy, data privacy and security, and digital divide and literacy issues.
Table 1: Summary of Literature Review (n=28)
All benefits of PHRs use found were in studies using Web-based PHR or integrated PHRs with EHRs. No studies in this review used stand-alone format PHRs.
Personal health records can empower consumers by allowing them access to and management of their own personal health information (Tang et al., 2006).
Nazi (2010) did a survey on Veterans (n=100,617) who used My HealtheVet. My HealtheVet PHR was developed with the goal of improving the quality, access, and efficiency of care while empowering consumers. My HealtheVet contains tools, such as secure messaging with health care providers for asking health-related questions, appointment scheduling, and requesting prescription refills. Fifty-six percent of respondents showed improved ability to manage their health.
Lee, Delaney, and Moorhead (2007) developed a Web-based PHR [Iowa PHR] which contained an interactive patient self-assessment and nursing feedback field that used user friendly vocabulary. It also contained a user-friendly interface to follow health condition trends. Experts evaluating the Iowa PHR found that patients were empowered by the ease of use of the system and by the usefulness of the information entered by patients for their health care providers.
Personal health records can empower consumers by supporting clinical decision making. A survey (n=50) by Baorto and Cimino (2000) was used for the development of context-specific links [InfoButton] in the Patient Clinical Information System (PatCIS) which allows consumers who are not savvy in medical knowledge to understand the results of their test reports. The InfoButton feature generates explanations of the terms with links to accessible resources on the Web. The InfoButton can be embedded into the PHR user interface to allow simple explanations so that consumers can make informed decisions regarding such health management issues as test preparation, interpretation of diagnostic reports, disease risk, and medication regimen.
The ideal PHR architecture can be augmented by data from health care provider EHRs, such as those from pharmacies, health monitoring devices, and laboratory and radiology clinics (Johnston et al., 2007). The integrated data can provide a more complete view of relevant health information for both consumers and their health care providers. For instance, Mandl, Simons, Crawford, and Abbett (2007) developed Indivo [EHR combined with PHR platform] which communicates with the health department regarding child immunization decision support for patients and their providers.
Studies that target potential impacts of existing Web-based PHRs found that many consumers value easy access to diagnostic test or laboratory results and better communication with their providers via email, secure messages, and online scheduling (Tang et al., 2003; Wang, Lau, Matsen, & Kim, 2004). Electronic mails or messages from consumers must be responded to in a timely manner, such as a minimum of a business day (Reti, Feldman, Ross, & Safran, 2010).
In a qualitative study (n=16) by Wagner, Howard, Bentley, Seol, and Sodomka (2010), participants who used a PHR (My HealthLink) felt that advantages of the system included tracking data, increasing understanding, and facilitating communication.
A quantitative study with a follow-up questionnaire and telephone interview (n=13) by Cimino, Patel, and Kushniruk (2002) on a Web-based PHR [patient clinical information system, PatCIS] which interfaced with a hospital clinical data repository, showed that a majority of consumers believed use of the system improved their interactions with their providers. For example, consumers were able to use PatCIS to enter data (e.g., vital signs, diabetes diary), review data (e.g., laboratory results), and receive customized advice based on specific problems and information about various health topics.
Ueckert, Goerz, Ataian, Tessmann, and Prokosch (2003) developed integrated PHR-EHR [akteonline.de] with a subset that includes contact information, allergies, confirmed diseases, and list of current medications. With the combination of Web address, user name, and information on a wallet card, this information can be accessed by another person during an emergency.
In a qualitative study, Reti et al. (2010) found that three out of seven hospitals had emergency access to health information in their PHR systems. The authors suggest that an emergency access feature of PHRs is one of the most important aspects of PHR as a consumer-centered paradigm.
Personal health records were valued for chronic disease management. Thornewill and Baluch (2007) conducted a survey (n=386) in ten counties in Kentucky. Fifty-three percent of households managing a chronic illness were willing to pay to use a community wide PHR [health record bank model] that had been implemented.
The focus group interview (n=39) by Hess et al. (2007) found that patients using integrated PHR-EHRs [UPMC HealthTrak] were able to manage diabetes between clinic visits through consultation with their providers. Patients also were able to learn how lifestyle choices impact diabetes health by using the system. A qualitative study (n=21) by Fonda, Kedziora,Vigersky, and Bursell (2010) used a prototype web-based personal health application (PHA) for diabetes self-management. It retrieves data from a PHR and displays them on a consumer’s iGoogle page. This data is used by providers for decision-support in diabetes self-management (e.g., diet or physical activity). A RCT (n=244) by Grant et al. (2008) found that a web-based PHR linked to the EHR increased rates of medication adjustment among diabetic patients.
Archer et al.(2011) indicated that adoption of PHRs with guidelines for health management can improve consumer health behaviors such as less use of tobacco, regular exercise, dietary changes, and improved medication compliance.
A prospective cohort (n=150) study by Tobacman et al.(2004) found that a cohort using PHR with information on immunizations, allergies, medications, and operations was better at keeping return appointments and updating their health records than a cohort without PHR. A RCT (n=99) by Bourgeois, Simons, Olson, Brownstein, and Mandl (2008) found that participants using a Web-based personally controlled health record [PCHR] were more likely to follow recommendations and stay home during an infectious respiratory illness.
A qualitative study (n=123) by Frost and Massagli (2008) using the platform personal health profile [PatientsLikeMe] found that consumers with amyotrophic lateral sclerosis (a relatively rare disease) exchanged disease management knowledge and developed relationships based on their shared concerns.
Concerns regarding data accuracy and reliability arise when consumers enter and update data (Tang et al., 2006). Kim and Johnson (2002) evaluated 12 web-based PHRs that employed data entry by consumers (e.g., medical history, medications, laboratory tests, diagnostics studies, and immunization). None of the sites provided any directions to guide consumers through the process of abstracting relevant information from prescription labels or test reports. Spell-checkers or identifying normal dose and reference ranges were lacking.
A survey (n=51) was done by Kahn et al. (2010) of consumers using an integrated PHR-EHR [myHERO] at the HIV/AIDS clinic at San Francisco General Hospital. Consumers noted that laboratory results were not up to date and lists of medical conditions and medications were incomplete or inaccurate. To improve data inaccuracies in an integrated PHR-EHR, the authors suggest that consumers need to be able to review and verify their information and alert their healthcare providers of any discrepancies.
More improved design of PHRs can enhance data accuracy as evidenced by a study at Johns Hopkins using Web-based PHR (Kim & Johnson, 2004). This descriptive study (n=11) found that using color coding or criteria-defined radio buttons to guide data entry can improve the accuracy of medication or laboratory result data entry by consumers to near 100 percent.
Data privacy and security protection are critical issues for PHRs (Kahn, Aulakh, & Bosworth, 2009). A national survey by CHCF (2010) found that 75% of adults without PHR would be concerned about the privacy of their health information if it were in a PHR.
Using a questionnaire survey (n=203), Whiddett, Hunter, Engelbrecht, and Handy (2006) found that many participants would like limits on the distribution of their personal health information for purposes other than clinical care. The authors emphasize the need to incorporate sophisticated access control (e.g., e-Consent system) into the PHR.
The Patient-Centered Access to Secure Systems Online (PCASSO) study by Masys, Baker, Butros, and Cowles (2002) demonstrated that 68% of consumers rated the login process very reasonable in this PHR, which provided all the security services required by the Health Insurance Portability and Accountability Act (HIPAA) security standard (U.S. Department of Health & Human Services, 2006) and the Health Care Financing Administration (HCFA) Internet security policy. This PCASSO model uses multi-step authentication (e.g., user ID, password, a diskette, and a PCASSO card) to give consumers control over access to their records.
In PHR, individuals determine who can access, view, modify, or transmit information from their PHRs; and the ability of the PHR to audit users gives consumers a sense of control over their privacy and confidentiality (Masys et al., 2002). For an integrated PHR with EHR, authentication is essential (Tang et al., 2006). Although HIPAA outlines the legal protections for PHR privacy and security for covered entities such as health plans and health care providers (U.S. Department of Health & Human Services, 2006), it doesnot have control over the independent PHR systems (e.g., Microsoft HealthVault) (Kaelber et al., 2008). Thus, independent PHR systems’ privacy and security have no current legal protections. However, the Office of the National Coordinator for Health Information Technology (ONC, 2011) recently released PHR Model Privacy Notice. It is designed as a standardized template that a Web-based PHR company can use to concisely inform consumers about its privacy and security policies.
The “digital divide” (Kim, Mayani, Modi, Kim, & Soh, 2005) is a rising problem affecting use of PHRs by consumers who have low computer competency and health literacy (Archer et al., 2011).
A descriptive study (n=38) by Lober et al. (2006) found a low feasibility of using PHRs for elderly and disabled populations related to computer and health illiteracy, and cognitive and physical impairments. In a survey by Kim et al. (2009), low income and elderly consumers (n=70) were provided with free access to Web-based PHR use [Personal Health Information Management System, PHIMS]. They found that PHR use was markedly limited by poor computer and Internet skills, technophobia, low health literacy, and limited physical and cognitive abilities.
A qualitative study (n=322) by Weitzman, Kaci, and Mandl (2009) found that low levels of technological literacy and low self-efficacy in navigating a Web-based personally controlled health record (PCHR) in an urban community may be reflected in a lack of understanding of currently available PHRs among the elderly. A cross-sectional study (n=75,056) by Yamin et al. (2011) showed that Blacks and Hispanics were less likely to adopt the PHR than whites, and those with lower annual income were less likely to adopt the PHR than those with higher annual income. The authors suggest that the digital divide is a factor in these racial and socioeconomic status (SES) differences.
This literature review on PHRs found that most of the studies were descriptive and exploratory studies, while relatively few were experimental studies. Little research was done on behavior change over time using PHRs; use of PHR in elderly, low-income or minority populations; and family health management.
This literature review suggests that PHRs can empower patients in managing their health through improved consumer-provider communication, ability to access their medical information as needed, and decision support systems. There are, however, barriers to PHRs use, including issues with data accuracy, data privacy and security, and digital divide and literacy. Despite the digital divide in disadvantaged populations, their satisfaction with using PHRs was high (Kim et al., 2007). This suggests that the design of PHRs should be easy to use (Kim & Johnson, 2004).
Also, consumers should have access to, and be educated on the use of, PHRs systems. Such education may be facilitated by nurses (Kim et al., 2007; Lee et al., 2007). From a nursing perspective, consumer education for illiterate and elderly populations is an important challenge. Nurses are inherently an important factor in engaging their patients to adopt and use PHRs. Also, nurses may leverage a PHR portal to accomplish tasks such as providing health education resources.
This literature review has several limitations. First, a methodological issue is that the majority of articles are descriptive and exploratory studies. Second, the authors did not use multiple reviewers in selecting articles. This may have increased selection bias. Third, the number of articles is small because PHR is a relatively new field of research.
Personal health records have the potential to be powerful tools for health management. The evolving literature suggests both benefits of and barriers to adoption of PHRs by consumers. From this literature review, integrated PHR-EHR is preferred. As a result of the continuing research on PHR, community adults will be able to contribute to their quality of life through PHR utilization.
Future research is needed on use of PHRs by consumer, family and caregivers; cost-effectiveness of PHRs use for consumers; and use of PHRs by consumers of different ages, education, SES and cultural backgrounds, and health and computer literacy levels. Theories based studies that use PHRs to motivate change in health behavior are needed.
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Kyungsook is in the third year of a PhD program at the University of Maryland School of Nursing. Her specialty area in the master’s program was Nursing Informatics. Clinically, she has worked as a registered nurse in the acute care setting at the University of Maryland Medical Center (UMMC) over five years. The majority of her patients were organ transplants patients, and she has frequently worked with their caregivers. While Kyungsook was working as a nurse, she has participated in many clinical projects that improved the quality of care by using information technology. She had the opportunity to support clinical information system design from the end-user perspective as well as a member of a clinical information council at the UMMC. While Kyungsook was in the master’s program, she was exposed to consumer health informatics and recognized that she can empower her patients and their caregivers using technology-based interventions and help them maintain a healthy life style in the community. Expanding her research interest, she has conducted an extensive review of the literature on the use of the personal health record (PHR) in adults. Upon graduation from her master’s program, she started her doctoral education to further develop her research capacity