Pushpangadan, S. & Seckman, C. (2015). Consumer perspective on personal health records: A review of the literature. Available in Online Journal of Nursing Informatics (OJNI), 19 (1)
Personal health records (PHRs) are designed to help consumers manage their health information and guide them to take an active role in their healthcare. The purpose of this literature review is to understand the consumer's perspective on PHRs. Online database literature searches were performed through Cumulative Index to Nursing and Allied Health Literature (CINAHL), Medical Literature Analysis and Retrieval System Online (MEDLINE), Pub Med, and EBSCO. The review included 28 articles. Consumer recommendations focused mainly on the following areas of PHR features, usability, communication, treatment compliance, literacy, interoperability and privacy/security. The PHR incorporated with EHR can provide added benefits to consumers and providers.
Introduction and Background
The key to encouraging consumer participation in healthcare is information. When health information is readily available, consumers can make informed health decisions that improve care management. Duplication of tests or procedures and medical errors can be prevented when there is easy access to pertinent health information. Personal health records (PHRs) offer a solution to access, availability and management of health information. The American Health Information Management Association (AHIMA) defines a PHR as "an electronic, lifelong resource of health information needed by individuals to make health decisions."(Burrington-Brown et al., 2005, p.4) Government agencies along with non-profit organizations, such as the Health Information and Management Systems Society (HIMSS), concur with this definition adding that the ability for consumers to manage, maintain and interact with their health information in a secure, private and confidential environment is equally important (Office of the National Coordinator for Information Technology, 2013; Kurtz, 2013). Medical history information in a PHR comes from a healthcare provider, hospital, insurer, or is entered directly by an individual. To date, there are few PHRs that communicate with electronic health records (EHR). The interoperability of the PHR to the EHR will be beneficial to consumers and providers (Lahteenmaki, Leppanen and Kaijanranta; 2009, Pringle and Lippitt; 2008).
PHRs are used to collect,track, and store medical data in one easily accessible secure location. Currently, there are two types of PHR models: 1) standalone/ web-based; and 2) incorporated/tethered. In a standalone/web-based PHR, the consumer is responsible for filling in all the medical information from their health records which can be very time consuming. This type of PHR is stored on the consumer's computer or the Internet and is often used to track and monitor health related behaviors, such as exercise and diet. An incorporated/tethered PHR communicates with a healthcare organization's EHR. This model allows for communication through the sharing of data from multiple healthcare sources and provides email, reminders and scheduling features to support care management (Stratis Health, 2009). An incorporated/tethered PHR also provides updated and accurate information which is an added benefit to both consumers and healthcare providers. (Lahteenmaki, Leppanen and Kaijanranta, 2009; Pringle and Lippitt, 2009). Several commercial PHR platforms have been developed to improve healthcare outcomes like WebMD's MyHealthRecord, WellMed's Personal Health Manager, MicroSoft Health Vault, Google Health and CBSHealthWatch's About My Health.
Although PHRs are a new and emerging field in healthcare, there is concern from consumers related to use, privacy and security of these systems (Zheng, 2011). Most of the PHRs developed are at a basic level and designed from the clinician's perspective. The adoption of PHR's has been slow and there is little research conducted from the perspective of consumers. To increase PHR adoption, more effort has to be taken to understand the concerns and needs of the consumer. Thus, the purpose of this literature review is to explore consumer perspectives of the PHR.
Methods and Search Strategies
Online database literature searches were performed through Cumulative Index to Nursing and Allied Health Literature (CINAHL), Medical Literature Analysis and Retrieval System Online (MEDLINE) and Pub Med. A comprehensive literature review was conducted looking at the consumer perspective on PHRs. The search terms included PHR, electronic PHR, computerized PHR, personal medical records, consumer's perspective or view or attitudes. The search was limited to: (1) English (2) peer-reviewed journals, (3) adult population (age 18 and above) and (4) publication year (January 2005 to September 2014). Screening identified 847 articles, of which 70 articles were retained for detailed review after removing duplications and articles related to frameworks or concepts. Of the 70 articles, 45 were excluded because they did not meet the inclusion criteria related to consumer perspectives of PHR's. The remaining 25 articles were included in this review.
Currently, health organizations and providers have only a piece of consumer's health information. To understand the consumer as a whole, health information should be populated in one area from multiple sources. A PHR that is linked to a healthcare organization provides a medium for consumers to interact, update and enhance their health information in one unique place. This saves time, resources and money for both providers and consumers (Tulu, Strong, Johnson, Bar-On, Trudel and Garber, 2012). In addition, PHRs supply a means to monitor, maintain and support healthcare activities throughout the consumer's life span. A literature review was conducted to explore customer perspectives of PHRs and the following themes were identified: features, usability, communication, digital divide, medical terminology, privacy and security. A summary table (Table 1) of the reviewed literature is viewable in Appendix A.
A PHR has valuable information regarding a patient's health and is an important resource for the consumer. The concept of a PHR is slowing gaining popularity. For developers to build new and improved products, the view of the consumer has to be taken into consideration. Some of the salient features of a PHR that are beneficial to consumers are medical record-keeping, appointment scheduling, bill payments, referrals, prescription refills and viewing of laboratory results (Gearon, 2006). A survey study was conducted by Patel, Abramson, Edwards, Cheung, Dhopeshwarkar and Kaushal (2011) with Beacon Community, New York residents (n=200) who used a tethered PHR. This PHR was developed to empower consumers in their healthcare and allowed consumers to access their health information and medical records, request appointments, process prescriptions, attain refills and referrals, get test results, find educational resources and communicate with providers. Features the participants were interested in were communicating with providers (6%) or viewing their medical records, test results and medication list (6%). The majority of participants wanted to view immunization records (89%); a list of providers visited (88%); lab test results (87%); history of prior medical visits and surgeries (87%); and medication history information (87%). Another interest was access to family member's healthcare information (71%).
Similar studies were conducted to explore useful features of PHRs. Fricton and Davies (2008) in survey study of congestive heart failure (CHF) patients (n=182) found the majority of the participants were interested in features like the organization of health records, including medications (91%); online calendars and reminders (74%); education (71%); access to community services (69%); online communication with providers (60%); and health care management (57%). Stoyler (2011) reported similar findings related to functions with a preference toward managing health information via the PHR. Somner, Sii, Bourne, Cross and Shah (2013) conducted a consultation exercise with glaucoma patients (n=71) to examine participants' opinions on the usefulness and features of PHR. The novel elements in a PHR that were suggested included emailing their providers, booking appointments, ability to print the record when needed, more medication information, and accessibility of the PHR for all healthcare team members. They concluded the use of PHRs to engage patients, as educational tools, and to promote interaction with the healthcare team was important.
Segall, Saville, Carlson, Wright, Schulman and Tcheng (2011) conducted a survey focused on attitudes of chronically ill patients (n=20), who were inexperienced with computers, after they used the Duke University Health System's Health View PHR system . The participants gave a 3.9 score out of 5 on the features of the PHR and 80% were satisfied with functionality like consistency, navigation, clarity of messages, and information organization. Features used most often were medications (81%), general health content (86%), and medical conditions (86%). The majority of participants (86%) were interested in managing more aspects of their healthcare such as allergies, immunizations, emailing physicians, accessing medical reports, and tracking their health conditions. In a similar study, Abramson, Patel, Edwards and Kaushal (2013) conducted a survey of 701 consumers in New York State, and reported that 74% of the respondents expressed interest in the usage and functionality of PHR. The majority of the participants ranked viewing medical records, test results and medication lists (67%); the ability to access their family member's medical records (61%); and communication with providers as the most important features (61%).
A large scale survey of 100,617 veterans was conducted to evaluate the usability and the satisfaction of a PHR called MyHealtheVet (Nazi, 2010). Consumers were satisfied with the PHR stating it was "user friendly" and were able to manage their health with the information provided. A similar study on the Kaiser Permanente's PHR system was conducted by Silvestre, Sue, and Allen (2009) who surveyed 1,702 registered members. Initially the use of the PHR was directed toward prescriptions and refills. The adoption rate doubled and then tripled with the introduction of test results and emailing with providers. Participants (57%) verified that the PHR was easy to use and helpful for providing insight into their health issues. Spil and Klein (2014) compared the usability of Google Health and Microsoft Health Vault. Participants found both systems were user-friendly, provided easy access and timely response although there were issues with privacy and trust.
Ozok, Wu, Garrido, Pronovost and Gurses (2014) conducted a survey on the MySafe-T.net system and the perceptions of the healthy consumers (n=29) who visited a Minnesota suburban primary care clinic. The design of the system was focused on preventive care. The aim was to increase compliance and enhance lifestyle changes with preventative screenings. The majority of the respondents (82%) were satisfied with the system although negative perceptions noted included difficulty in understanding medical terminology and inaccurate information. In addition, participants felt that their providers were able to keep an eye on their health and gave a high rating for the "resources" and "recommendations" pages. Another study also identified system design, content and functionality as factors that influence the usability of the PHR (Viand, 2014). Ngyugen (2011) targeted the opinions of young healthy adults (n=29) in Montreal, Canada, over an eight-month period. Over half of the participants (52%) thought the PHR was useful for managing their health.
PHR and Communication
Consumers place significant value on communication with their providers. PHRs are a bridge to improving communication and collaboration and can initiate open communication between providers and consumers that can transform visits from intermittent to steady follow ups. In the long run, this will dramatically reduce time needed to answer health issues and manage care. In a qualitative study on My HealthLink, Wagner, Howard, Bentley, Seol and Sodomka (2010) reported that the adoption of PHRs supported better communication between patients and providers. In a cross sectional study, Lam, Lin, Senelick, Tran, Moore and Koretz, (2013) compared the preference of young and old adults (n=324) regarding health information exchange with promising results. The study concluded that more than 80% of the participants favored provider communication via email and verified that the system was easy to use.
PHR and Digital Divide
Digital divide refers to the availability of computer technology or skills needed to utilize health information technology (Alexander, Frith, & Hoy, 2013). Research done by Wen, Kreps, Zhu and Miller (2010) showed that age, racial ethnicity and Internet access were predictors for PHR adoption. Study participants aged 65 and above were less likely to see the importance of the PHR. Hispanic participants were more interested in PHRs than the non-Hispanic population. In a similar study, Roblin et al (2009) evaluated disparities in PHR use in a managed care organization. The majority of users were white (42%), between 55-59 years (38%) and had post graduate education (44%). In contrast, Wagner et al. (2012) indicated that as age increased PHR use decreased, and greater use was associated with higher computer skills.
Yamin, Emani, Williams, Lipsitz, Karson, Wald and Bates (2011) conducted a cross section analysis survey between the adopters (n=32,274) and non adopters (n=42,782) of PHR. This study suggested that "digital divide" was a factor in the access of PHRs and race/ethnicity and insurance status differences were evident. Blacks (4%) and Hispanics (2%) were less likely to adopt PHR than White (84%) participants. They also found older adults (51-65 years) were the highest users of the PHR. In a descriptive study, Lober et al. (2006) explored age, computer literacy and computer anxiety. They reported computer literacy and anxiety were barriers to adoption. They also found that the elderly and disabled populations had lower adoption of PHRs.
PHR and Medical Terminology
Medical terminology is difficult to understand for anyone without medical training. This can mislead or confuse consumers. The PHR is considered the road to empower patients, increase prevention of care, and improve communication between providers and consumers. For consumers to take full advantage of the PHR, health information should be at a basic reading level with explanations or support provided for medical terminology.
Keselman et al. (2007) found that participants (n=104) had difficulty understanding provider notes and test results. Participants suggested that this could be alleviated if there were pointers to general reference support for components like laboratory results, radiology tests, and medical terminology. Respondents preferred terminology that used "simpler words" or "laymen's terms" in place of "medical terms" and suggested online dictionaries should be embedded for easy reference. More than half of the participants (84%) were utilizing Internet resources to interpret their medical records. Likewise, in a comparative study of three PHR systems, Liu and Hayes (2010) also reported consumers were concerned that medical jargon was difficult to understand and suggested that PHR providers should keep medical terminology as basic as possible.
Privacy and Security
Currently there rules for the privacy and security of PHRs are just emerging, especially for systems designed by independent vendors . Regardless, PHR vendors should guarantee adequate privacy and security of consumers' health information. Unlike other technologies, such as e-banking, PHRs have more transparency and are viewed by a number of health personnel. Therefore, privacy and security are important drivers in the adoption of PHRs. A Markle Foundation (2008) survey of 1,580 adults reported privacy concerns related to misuse of personal data by marketers (77%), employers (56%) and insurers (53%). The main areas of concern were identity theft and limitation of employment opportunities due to chronic conditions. Consumers wanted to share their data with providers, but preferred to control who could access their health information.
A focus group study of 29 Canadians by Nguyen (2011) showed almost half of the participants (48.3%) took privacy and security of the PHR seriously. Keselman, et al. (2007) suggested that secure electronic Internet access could be configured to support PHR privacy and security without violating HIPAA requirements. Finally, Kerns, Krist, Longo, Kuzel, & Woolf (2013) conducted a qualitative focus group study of users and non-users of a PHR (n=28) to explore issues of security, privacy and accessibility. The majority of participants strongly opposed commercially developed PHRs and cited issues with privacy, security and accuracy as a deterrent to adoption.
Functionality, usability, communication, digital divide, medical terminology, and privacy and security are all important issues for PHR adoption. Many studies supported the need for features such as medication information, immunization records, provider lists, diagnostic test results, medical history information and features to manage ongoing care (Abramson, Patel, Vaishali, Edwards, & Kaushal, 2014; Fricton & Davies, 2008; Maloney & Wright, 2010; Patel et al., 2011; Segall et al., 2011; Somner, Sii, Bourne, Cross & Shah, 2013; Stoylar, 2011).
Nearly all of the studies revealed that it is vital for consumers to have the ability to personalize and track health information.This includes medication reconciliation, viewing test results and scheduling appointments.Some consumers also were interested in advanced functionality of PHRs, such as the ability to communicate with their providers and being able to update their records.From the consumer end, the important advantage was the availability of having all their health information in one place. Ideally, health information should be one touch away and provide a complete summary of the consumer's health. But these features must be designed in a way that the system is easy to access, user friendly and useful to the consumer (Nazi, 2011; Ngyugen, 2011; Ozok, Wu, Garrido, Pronovost, & Gurses, 2014; Silvestre, Sue, & Allen, 2009; Spil & Klein, 2014; Viand, 2014).
PHRs have the ability to empower consumers through increased communication with providers, easy access to health information and health promotion. Consumers indicated the PHR provided a communication channel with providers through shared data, email, reminders and other efforts to manage care (Lam et al., 2013; Wagner, Howard, Bently, Seol, & Sodomka, 2010). This stresses the importance of the consumers desire to be involved in care decisions.
In addition to the benefits of PHRs, several areas of concern were identified by consumers. The ability to access online health information raises the question of privacy and security of PHRs. As each sector of society has different perspective of PHRs, this could be helpful in the design and development of future systems. Some concerns over privacy and security were related to commercial products, thus PHRs integrated with provider systems were viewed as more trustworthy and accurate (Emani et al., 2012; Kerns et al., 2013; Markle Foundation, 2008: Wagner et al., 2012). As more PHR's become part of the bigger EHR systems questions of ownership may arise. Consumers want control over who has access to their health information and expect compliance to privacy, confidentiality and security regulations.
Other obstacles that were discussed included digital divide, medical terminology, literacy and accuracy of information. The few studies on the perspective of the elderly population and ethnic groups presented a different view on the issue of digital divide. Disparities related to PHR use among the elderly and non-white races were evident in three studies (Lober et al., 2010; Roblin et al., 2009; Wen, Kreps, Zhu, & Miller, 2010). Some of this may be due to lack of computer skills or access to technology that supports PHR. The elderly population was eager to adopt PHRs after understanding the benefits and with additional help from family, friends or caregivers. A support system could aid the adoption of PHRs by the elderly and the disabled. Functionality in a PHR should be flexible with the ability to address the needs of different ethnic groups as well as the elderly and disabled.
Two studies indicated the use of medical terminology was a deterrent to PHR use citing a need for simple language and resources to explain medical tests and terms (Keselman et al., 2007; Liu & Hayes, 2010). The ability to understand medical terminology is difficult for consumers. This issue can be reduced by incorporating online dictionaries, translators and links in the PHR. In addition, medical language by providers should be standardized. As medical terminology becomes easy-to-understand, health literacy improves. As discussed, PHR has great potential in helping the public but the deficits and concerns should be resolved.
For PHRs to be beneficial, more research is needed on consumer perceptions of PHR adoption, features and usage. Publicity of PHRs should be encouraged by health providers, vendors' employers, insurers and the government. Effort should focus on the benefits and risks of each type of PHR.Education should be provided related to PHRs functionalities and how the system can help consumers maintain and monitor their healthcare. Additionally, there is scarce research done on elderly and the disabled individual's use of PHRs, low-income or minority populations and behavioral changes with the usage of PHRs.
Nurses involved in direct patient care have the opportunity to answer any questions the consumers have and guide them accordingly. But nurses also play a dual role in the adoption of PHRs as both consumer and advocate for PHR. As consumers, nurses have an understanding of the healthcare process and the importance of capturing accurate data and information. With firsthand knowledge on PHR use, nurses can assist their patients to access online health information and encourage them to become more active in their healthcare. In addition, any misconceptions of PHRs can be corrected. This allows the consumers to use the PHR to its fullest functionality.
Nurses need to be actively involved in the design and development of PHRs. They can guide vendors in determining how information in PHRs should be presented and which features should be basic. Nurses can also identify helpful information, determine content important for care, and at what level is appropriate so that the consumer can understand and gain the most benefit from the PHR. Nurses provide expertise on patient education, in-depth knowledge on individual and community assessment and serve as leaders for patient advocacy and empowerment. These are all qualities that nurses can use to promote consumer use and adoption of PHRs.
Personal health records are powerful tools for the management of health. The literature strongly suggests that consumers are interested in adopting PHRs. This indicates that with the utilization of PHRs, the adult community will be able to take initiative in their health and aim for a better quality life. The perceived usefulness and features emerged as the important domains for consumers. The development of PHRs is currently in its initial phases. There is a lot of room for improvement, in addition to the development of policies and procedures. The perspective of the consumer should be the foundation when building and designing PHRs. Some major features that most consumers want in a PHR are: easy navigation, explanation of medical terminology, the ability to view their medical documents, understand the test results and medications and be able to communicate with their providers. However, barriers like digital divide, medical terminology as well as privacy and security concerns may hinder adoption. These barriers can be addressed through increased consumer outreach and policies that strengthen privacy and security regulations. In addition, more education on PHR and its usefulness should be encouraged by the public and private sector. Interoperability of the PHR with existing EHRs will be a bonus to both the health care field and society. In order to increase adoption and foster positive change in health behaviors, PHRs need to be universally accessible, user friendly, protect consumer's privacy and be controlled by patients themselves. Nurses can serve as strong advocates to engage patients and consumers and encourage PHR use. To get there we have to place patients in the driver's seat.
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Smitha Pushpangadan, MSN , RN is a Clinical Informatics Specialist at Medstar Washington Hospital Center. She has her Masters in Nursing Informatics from University of Maryland School of Nursing. Pushpangadan has one-year experience as an Application Analyst with GE Centricity and 10 years of nursing experience in different areas like cardiac step down, medical/surgical, medical ICU, cardiac ICU, home health and school nursing. While Pushpangadan was working as a bed side nurse, she had the opportunity to participate in the Go live of Cerner's Medconnect phase I and II and Barcode Medication Administration Record. As an Application Analyst she has supported GE Centricity applications, AS software and Dragon speech. Currently Pushpangadan's roles include as of project manager, and consultant. She also presides over training and developing of training videos for Medconnect's Power chart and First Net application.
Charlotte Seckman, PhD, RN-BC, is an Assistant Professor at the University Of Maryland School of Nursing and certified by the American Nurses Credentialing Center in Nursing Informatics. Dr. Seckman has more than 25 years' experience in a myriad of informatics roles, including project manager, clinical systems manager, consultant, education director, and researcher with a focus on electronic health record adoption, patient portals and providing personalized decision support tools at the point of care to support evidence based practice.