In the United States, the crucial role of health information technology (HIT), a major component to improving the health care system, has led to the establishment of the Office of the National Coordinator (ONC) for Health Information Technology and to a national initiative for policies, services and standards toward a national health information network (ONC 2010). Advances in HIT, including personal health records (PHRs), hold promise to increase patient safety, cost-effectiveness and health care quality (Markle Foundation 2003). In the management of chronic illness, the need for HIT is quite evident and addressed in the Institute of Medicine (IOM) reports Crossing the Quality Chasm (2001) and Retooling for an Aging America (2008). While everyone, with or without a chronic illness, would benefit from enhanced HIT, older adults with chronic illnesses may be particularly in need of assistance to adopt the new technology due to multiple factors that contribute to a reluctance to use a PHR system (Or and Karsh 2009). Our aim in this initial phase of the RAISE (Rapid Access Integrating Safer Entry) into the healthcare system for the Elderly project is to identify the readiness of both physicians and older adults to adopt the use of a USB PHR system to improve collaboration and medication management of individuals with chronic illnesses.

The RAISE-Elderly project is an ongoing research project that aims to improve participants’ acceptance and use of PHRs through education and support modules. It is hypothesized that through this intervention improvement in patient activation, chronic disease management self-efficacy, health literacy, will be demonstrated which, in turn, will advance the active partnership with their healthcare provider. In the long term, improvement in the health status and a reduction in the number of emergency department (ED) and clinic visits, and hospitalizations may be seen. This project is one of the first to measure the economic impact of introducing the USB PHR for medication reconciliation.

Personal Health Records

PHRs have the potential to help avoid injury and death by increasing clinicians’ access to accurate health information (Tang and Lansky 2005; AHIMA/AMIA Position Statement 2007). In a nationally representative survey of 1580 adult consumers age 18+ and clinicians conducted by the American Medical Association and the Markle Foundation, 80% of adults believed that PHRs would provide major benefits in terms of health care services and health care self-management while only 3% of the adult population had a PHR (Markle Foundation 2008).

PHRs function in four general areas: 1) information collection (e.g., past medical and family history, allergies, medications, health-related diaries such as mood and sleep diaries, glucose monitoring logs; 2) information sharing (e.g., between patient and provider); 3) information for self-management (e.g., chronic disease self-management action plans); and 4) information exchange (e.g., appointment scheduling and medication management) (Kaelber et al. 2008). PHRs can be part of an existing electronic health record (EHR) and are considered provider- or payer-tethered depending on the source of the Internet-based EHR. Standalone systems working with EHRs, such as the kind proposed in this research, have the benefit of both portability and interoperability with input from clinicians, medical devices and wellness programs.

Quality, patient-centered and safe health care for chronic illnesses requires a knowledgeable informed older adult who actively participates in his or her own care with the health care provider (Greene et al. 2005; IOM 2009). Individuals with chronic illness cannot rely solely on their health care provider for health care management and are now seen as critical partners. A recent report from the Center for Studying Health System Change stresses the link between activation (patient engagement in their health care) and positive health outcomes (Hibbard and Cunningham 2008). The level of activation depends on patients’ reciprocal relationship with their provider. Health literacy, patient activation and health education are important components for older adults to make an informed choice (Chang et al. 2004; Hibbard et al. 2007). Health literacy and patient activation also influence health outcomes specifically by improving health status and reducing health care costs (Lorig et al. 1999; Lorig et al. 2001; Bodenheimer et al. 2002). At the foundation of health self-management is the ability of the older adult and their health care provider to access the same medical information. However, in a cross-sectional study of 955 ambulatory care physicians, 25% of those who responded reported being unaware of what a PHR was, and 60% were unaware if any of their patients used a PHR and thus were not involved in this kind of information exchange (Fuji et al. 2008).

Previous research has demonstrated the feasibility of using HIT to improve health. Examples include text messaging to promote healthy behaviors and weight loss (Gerber et al. 2009); multiple types of computer assisted technology to improve diabetes care (Jackson et al. 2006); and HIT to improve drug monitoring (Hayward et al. 2009). A comprehensive review (Jimison et al. 2008) of interactive HIT use for the elderly, chronically ill and the underserved emphasizes the need for active participation on the part of both provider and patient. Patients used a system such as PHRs when they perceived a benefit in managing their chronic illness; when it was convenient to their lifestyle; when the technology was introduced slowly; and when their providers were involved (Jimison et al. 2008).

The key to PHR use lies in its acceptance, use and proper updating of health-related information. Improving access to important health details enhances continuity of care also believed to curb adverse health events. PHRs empower users to take more active roles in the delivery of their care (McCarty 2007). While insufficient evidence is available, PHRs are believed to limit costs by avoiding duplicate tests (NCVHS 2006) and by reducing chronic care costs (Tang et al. 2006). The USB PHR system has the added benefit of not requiring Internet connection, often unavailable in crisis or disaster situations, to access the needed medical information.

Research in the use of PHR systems by older adults is relatively new (since 2006) and therefore scanty. In a descriptive study of 38 older adults (mean age 69), the majority could not maintain a web-based PHR independently due to computer anxiety and lack of computer skills and insufficient health literacy (Lober et al. 2006). PHR used in a low-income elderly population (N = 46) found that half of the older adults used the web-based system only once and did not complete all areas of the PHR (Kim et al. 2007). In a 33-month study (N = 44), only 13% used the web-based PHR and 80% of those who did use the system needed assistance (Kim et al. 2009). PHR use was limited by poor health literacy, poor technology skills and limited physical/cognitive abilities.

The RAISE Elderly project takes the next step in HIT adoption by engaging physicians first to use and update the USB PHR and by having nurses complete the USB PHR in the home. These two factors coupled with educational and support modules are designed to improve acceptance and activation of the older adult in their healthcare.

Methodology

A descriptive exploratory study was conducted in this initial phase of the RAISE Elderly project. Following approval by the Brigham Young University Institutional Review Board (IRB) for protection of human subjects, two focus groups consisting of geriatricians and community-dwelling older adults were held to provide data on barriers and facilitators to USB PHRs in general. With a design to engage physicians first in the concept of USB PHR use, the first focus group consisted of a convenience sample of geriatric physicians (N = 15). An audience response system was used that allows for increased interactivity, polling anonymity, and immediate feedback and clarification. Physicians were polled on such topics as previous experience with PHRs in general and USB PHRs specifically as well as their opinions about the potential impact of USB PHRs on the key quality indicators of healthcare delivery systems, which are effectiveness, efficiency, equity, patient-centeredness, safety and timeliness of services (Aday et al. 1998; IOM 2001). Additionally we asked them about their concerns regarding USB PHR use and their willingness to work with patients who use a USB PHR. Physicians also discussed concerns about privacy, security and accuracy of information; viruses on the USB drive; and difficulty in updating the PHR. A PHR software designer was available to the focus group to answer physicians’ questions about USB PHR systems.

Acceptance and perception of usability of USB PHRs was also assessed in the community-dwelling older adult focus group (N = 15). Seniors between the ages of 55 and 85 who attended a community senior center were asked if they used a computer; knew about PHRs, and, in particular, knew about USB PHRs. The USB PHR system was briefly explained. Key quality indicators of a healthcare system were defined. Using the format of an anonymous audience response system followed by discussion, opinions were obtained on their concerns about using a PHR; the potential of PHR use to improve their health care (patient safety, efficiency, effectiveness, equity, patient-centeredness and timeliness); and barriers to USB PHR use.

Findings

The majority of the geriatric physician group (12 or 80%) had heard about or had experience with PHRs. Perceived benefits to PHR use were identified as increasing patient-centeredness (13 or 81%) and patient safety (11 or 74%). When asked if USB PHRs would increase efficiency of the health care delivered, six (40%) physicians responded that they would and nine (60%) were undecided. Common concerns about USB PHR use were the accuracy of the information on the PHR (14 or 94%) and the time it would take to update the PHR (15 or 100%), both of which are key to its success. Overall, fourteen (94%) of the geriatric physicians indicated that they would be willing to work with patients who used a USB PHR.

Acceptance and perception of usability were also assessed in the older adults group attending a community senior center. One third of the 15 seniors surveyed admitted not being comfortable with computers. The majority of seniors had never used a USB drive (10 or 67%). Only four (27%) had experience with PHRs. A very brief discussion followed on a USB PHR and its purpose, which included definitions of terms. Afterward, the older adults reported that they thought a USB PHR would increase efficiency (11 or 73%); effectiveness (12 or 80%), patient-centeredness (12 or 80%), patient safety (14 or 93%), and timeliness (14 or 93%) of their healthcare. Concerns about privacy and security of medical information appeared in only three (20%) of the responses. Almost half (7 or 47%) reported that updating the PHR would be a barrier to its use. Almost all (14 or 93%) said that if their primary care provider would update the USB PHR, they would use it. Although not generalizable, these findings are valuable as they suggest that although these older adults may have little or no experience with computers and PHRs, they could see benefits to USB PHR use and may use them if they receive adequate support from their providers.

Implications for Practice

When any major new technology is initially introduced, there is a period of innovation diffusion (Beal and Bohlen 1981). While paper-based personal health records have been used for decades, electronic personal health record use began after 2000 with research on older adult use of this technology since 2006. Recognizing the importance of this process, we anticipate a period of delay by both the provider and the patient communities to realize the importance of the system change and become motivated to adapt to the change on a wide scale. Using RE-AIM (Reach, Effectiveness, Adoption, Implementation and Maintenance) concepts, it is important to begin with engaging the health care provider first to translate this clinical informatics intervention into routine clinical practice (Bakken and Ruland 2009).

Future Research

Future research will consist of two phases. The first phase will use a qualitative approach to inform the design of a home-based educational and support intervention for USB PHR use. The needs and preferences of older adults to accept PHR technology will be addressed as well as the importance of chronic disease self-management. Questions will be organized around key theoretical concepts: predisposing, reinforcing and enabling factors.

In the second phase, a prospective randomized clinical trial will test the comparative effectiveness of home-based educational and support modules to promote active use of a USB PHR system for medication reconciliation. Participants will be randomly assigned to a control group (usual care) and an intervention group and followed over 9 months. In the intervention group, nurses will complete the USB PHR in the home and follow up with medication reconciliation in a geriatric primary care clinic. Clinic staff will update the USB PHR at each visit. Individual educational/support modules will be given at each of four home visits. This study will quantify the economic impact associated with medication reconciliation by measuring the change in health care utilization. Outcome measures for this phase are listed in Table 1.

Table 1 Outcome measures
Full size table

Conclusion

With the critical need to access personal health information at any time and in any place, older adults and physicians recognize the potential impact that the use of a USB PHR system may have on improving the quality and safety of health care. Although older adults in this study admitted to a general lack of computer literacy, they would use a PHR system if they had physician collaboration. The next step is to determine the specific needs and preferences of older adults to enhance their readiness to adopt PHR technology. Based on the information gained through including older adults in the design and acceptance of a PHR system, an educational and support intervention will be developed to determine if a USB PHR system will enhance medication reconciliation, improve chronic disease management self-efficacy and patient activation, and result in a cost-effective means of improving health care quality and safety in the area of medication reconciliation. The intervention phase is designed as a pilot study (N = 120). Additional larger demonstration projects are planned. The RAISE Elderly project aims to increase the quality and safety of older adults with chronic illnesses through the use of USB PHRs. Slowly adopting this form of HIT with the support and education from health care professionals may increase consumer activation in their own health care. In the long run, the electronic health record and the USB PHR may be effective interconnecting systems to improve the quality and safety of health care by increasing adoption of HIT.