In this study, we identified the requirements for an ePHR for CKD patients from users’ perspectives, and its content and structure needed to help support those requirements. These characteristics were analyzed in the face of ePHR’s likely facilitators and/or barriers to its implementation and adoption. If this knowledge is applied for ePHR design, it can most probably contribute to a smooth ePHR implementation/adoption. Overall, our participants expressed positive attitudes towards ePHRs and envisaged that the given ePHR will increase access to credible health information and individualized education, and thereby, empower patients to self-manage their disease more effectively. They also emphasized that such a system should be designed to fit the e-health literacy level of patients and only display CKD specific information depending on patient different conditions. To put it in other words, it should tailor information in ways that protect patients from being overwhelmed with extra, unnecessary information.
Studies have reported that one of the many benefits of ePHRs is easier access to patients' past and present medical data and information breaking through the time and space barrier, and the ability to exchange and share them with whoever is involved in patient care (3, 34–37). According to our participants, ePHR can be a powerful tool to resolve problems with paper-based medical records such as their incompleteness, illegibility, and inaccessibility. It can also bypass time and space barriers to access care providers, for example, in cases when they do not remember the details of care recommendations or are puzzled about their roles and responsibilities in care plans. Such expectations from an ePHR are in line with the results of previous studies in which researchers reported improved patient-provider communication or where patients are reminded about what they will do for upcoming check-ups or vaccinations (7, 38). Besides these, our participants also thought that the ePHR would save them time on patient education and information access that they would be able to spend that saved time on direct patient care, as reported previously (39). Moreover, information access can potentially reduce unnecessary patient referrals for diagnostic or therapeutic procedures, and lead to more timely decision making (27). However, the findings on time saved via ePHR should be interpreted cautiously and the expectations kept modest because its use might also be perceived as a time-consuming task. This is because some studies reported that using ePHRs by providers required their duplicate time and efforts to handle issues related to the ePHR use parallel to the other tasks of patient visits in the office time (39, 40).
Several reviews have so far studied the barriers to ePHR adoption (37, 41–44). These studies have reported providers’ concerns about legal issues to respond to patient inquiries through ePHRs (e.g., who from the members of a care team seeing a patient’ inquiry would respond to an emergent situation) and also concerns over the privacy and security of information. Other barriers were also discussed in the literature such as patients’ individual factors (e.g., patient age and gender, health and computer literacy, and access to computers and the Internet), technical factors (e.g., lack of interoperability with other Health Information Technology (HIT) systems such as electronic health records, and lack of customized features for chronic conditions) (45–47). Many of these issues were also raised by our participants as concerns that needed to be considered before any ePHR adoption. For example, they discussed the feasibility of automatically retrieving information stored in a CKD registry or HIS in order to reduce workload associated with data entry, as previously reported as a critical point especially in untethered ePHRs (39, 40, 48). Therefore, easy, intuitive, and preferably automatic data entry for some data should be taken into account when designing such systems. Our participants also emphasized the need to preserve the privacy and confidentiality of data. Similar concerns have also been reported in other studies, for example, patients had been concerned about the confidentiality of a stigmatized or sensitive condition such as having depression or infection with Human Immunodeficiency Virus, or others were worried that their information could be accessed and might be misused by insurance companies to deny coverage (49–51). This was also the case for caregivers’ access to some sensitive information (50, 52, 53). Participants also highlighted the cost of services delivered through ePHR. Besides the necessity for tangible incentives in order to adopt PHR, it has been shown that clarity is needed for how PHR-related services would be paid for, who would pay (patients or payers) and under what circumstances (48, 54–56). Such findings show that the successful application and use of ePHRs should address likely barriers before any implementation, or otherwise, these may threaten its deployment.
Parallel to barriers, we also considered likely facilitators, which might contribute to the ePHR’s smooth implementation; and compared the findings with the others (41–44, 57, 58). A review found that patient encouragement by providers to use ePHR, their perception of control over health information, and also their perception of ePHR’s greater potential to improve patient-provider communication are facilitators that can help expedite ePHR adoption (42). Similarly, our participants valued ePHR features such as facilitated communication with providers and easier access to data. Designing a system to satisfy these expectations would likely promote its adoption. Another review reported that besides the availability of secure messaging and eVisits with care providers, online appointment scheduling and reminders, and online access to patient laboratory and radiology results also promote patients to use ePHRs (43). Participants also requested the availability of care reminders (e.g., about the time to take medications or to receive a vaccination shot) and online availability of laboratory results and their trends because they believed that these features would promote self-management. Our findings also accord with those of others in which tailored system interfaces to the educational and e-health literacy level of patients are recommended for ease of use (57). Moreover, it also became evident in our study that caregivers should be considered as users and involved in the PHR application as surrogates to patients in order to overcome some of the predicted barriers such as health and computer literacy by elderly, as recommended in the literature (58).
In the deployment of HIT systems, their data elements and design structure can influence what advantages they would be able to deliver. In a CKD study in Canada, data elements were classified into four main categories of demographics, educational, behavioral and activity monitoring, and laboratory results (24). Researchers in Thailand reported a knowledge-based ePHR system, especially designed for CKD patients, which had electronic forms for recording personal information, medications, laboratory tests, dietary patterns, and exercise activity (23). In our study, besides the above data categories, participants requested the following categories to be included in the system as well: a comprehensive, purposefully documented medical history, patient’ scheduled reminders, individualized educational contents, and information on record access by caregivers and care providers. When compared with the results of two previous CKD studies, data items associated with the recording of behavioral and activity monitoring, diet, and exercise were not included in our final list, mainly because they were not approved for the early implementation phase. Participants believed that the system to start with should be much simpler with the most important items individualized based on each patient’s health conditions in order to be manageable. Extra functions can be added step-by-step later on when patients get acquainted with the system. It was also decided that the message exchange function between patients and care providers should be only for non-emergency situations; and in emergencies, patients should be trained to contact care centers to get the required care, promptly. This was because of concerns that messaging through the system may induce the perception that somebody is available all the time to respond even to an emergency condition. This finding and other chronic disease factors have rarely given full attention in the literature (59). Our findings that the intended ePHR should include functions and structures such as messaging, reminders, disease-specific individualized educational information, and medical record summary, have also been similarly reported elsewhere (23–26). Meanwhile, ePHR is an evolving technology and it should be borne in mind that access to personalized, disease-specific information through a robust architecture controlling secure access to patient information should be at the center stage of the design efforts (60, 61).
4.1. Strengths and limitations
In the present study, we used nephrology care as exemplary chronic disease care with all its corresponding characteristics such as CKD patient's multiple comorbidities and underlying diseases and disease stages with various information/educational needs along the way, multiple patient hospital admissions/patient referrals, and the involvement of different kinds of care providers in different types of wards/units/settings, to get a deeper insight into what requirements/need an ePHR should cover in order to provide value for both chronic disease patients and their care providers involved in this complex chronic disease care. Therefore, the approach used in this study is fairly applicable for the analysis of requirements in other chronic diseases. However, it has limitations that deserve to mention here. Although our results provide a thorough overview of CKD care involving different stakeholders with an ePHR, its specific care requirements may not be generalizable to other nephrology settings. For example, our nephrology center was the pioneer in the design and implementation of a CKD registry in the country based on its care context (62). Several universities have just started negotiations for this registry’s implementation. Hence, it is possible that the emphasis to integrate an ePHR with the available HIT systems would not be immediately feasible in other nephrology settings. Next, this study was conducted in adult nephrology care; therefore, its findings may not be applicable in pediatric nephrology care in which a patient’ parents commonly deal with ePHRs.