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The Personal Health Record and Consumer Health Information Portals Report

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Introduction

Introducing innovative technologies in the healthcare sector has allowed expanding people’s opportunities regarding access to medical services and gaining control over personal data independently. The inclusion of the electronic health record (EHR) system in many clinics has made it possible to systematize patient data and provide quick access to the necessary information. However, unlike such databases that all interested employees of medical institutions can, the personal health record (PHR) mechanism is intended solely for maintenance by patients themselves. These systems are user-friendly applications that help store all the health information they need online. In addition, such repositories are confidential, and only their owners can manage the information entered. Moreover, on specialized portals, PHRs are connected to EHRs, which simplifies the data acquisition algorithm. This work aims to describe PHRs in the context of stakeholder needs, practices for their promotion and utilization, benefits, risks, challenges, and limitations to healthcare information portals, as well as strategies and outcomes of implementation. Introducing these systems is convenient for the systematization of patients’ personal data, which helps minimize any errors in taking medications and record all crucial data concerning health indicators. [1]

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The PHR in Terms of Stakeholder Needs

The widespread use of PHRs is a result of advances in the healthcare industry and the digitalization of many procedures, including access to personalized patient information. Users of such applications have an opportunity to organize all the important data in one place, thereby simplifying the entire storage algorithm. According to Gagnon, Payne-Gagnon, Breton, Fortin, Khoury, Dolovich, et al., [2] many stakeholders are interested in PHRs due to the convenience and benefits that these systems bring. In addition, one should take into account the classification of these tools into two groups – tethered and standalone programs. [2] The first category implies interacting with EHRs and helps people obtain relevant data online. Standalone PHRs are managed by patients themselves and can be either presented to healthcare employees or not. However, in the context stakeholder needs, special rules exist that determine the mode of involvement and the degree interested parties’ access. [2]

Accessibility is one of the properties of PHRs that need to be considered in the context of stakeholder needs. The analysis of academic literature proves that when choosing appropriate tools for storing personal information, customers prefer the ones with the best indicators of protection and security. [3] Therefore, the comparison of PHRs and EHRs can be made in the framework of data accessibility. Patients tend to give preference to the first category of tools due to an opportunity to access the functionality of these programs quickly. For medical personnel, in turn, EHRs provide more opportunities and are more convenient means of storing and systematizing data. Moreover, PHRs, as a rule, do not have a function of sharing information among individual accounts, while EHRs have such an option. Therefore, the availability factor is a significant aspect that determines stakeholder needs. [3]

Patients of different profiles use contemporary electronic mechanisms for storing personal data. In this regard, the study was conducted in which particular attention was paid to the fact that not all people intend to “to play an active role in the decision making process” or make final decisions concerning their treatment process. [3] Accordingly, for patients with problems that require the participation of medical personnel, the EHR system may be preferable because specialists have access to various types of important information. PHRs, in turn, can be utilized with benefits by those people who are interested in monitoring individual health indicators rather than self-treatment. Since only account owners can access the stored data in accordance with the legislation, [3] this allows them to personalize their records. More detailed and diverse information may be included in such systems. This format may be inconvenient for medical specialists because, in EHRs, information is presented in a compressed form for the ease of analysis. Therefore, the value of PHRs may be determined by the degree of stakeholder interest. [3]

Strategies to Facilitate PHR Acceptance and Utilization

In order to expand the use of the PHR system among stakeholders, the necessary conditions are to be created. First, as the study confirms, [4] it is essential for both patients as users and medical providers to be aware of the convenience of such an application. For this purpose, along with the introduction of EHRs in medical institutions, PHRs may be offered to the public as tools for recording and storing personal health information. If the target audience receives information about such digital resources from healthcare professionals, this will be an additional incentive to popularize these systems due to support from competent specialists. Secondly, the communication issue, as the research results [4] confirm, is a topic that needs to be addressed when adopting PHRs. Despite the convenience of their acceptance, patients may not be able to consult with medical providers if they identify negative health indicators. This means that educating the population about how to interact with healthcare providers should be part of a program to integrate the PHR system into general practice. [4]

In addition to the aforementioned issues, the design of the digital resources in question is an important topic to address. According to Ozok, Wu, and Gurses, [5] among potential users of PHRs, older adults are a wide audience due to their need to record much personal health information. In this regard, the authors [5] offer to develop the simplest possible design of such applications in order to make working with this system convenient and clear. To achieve this objective, understandable directories for all the files should be created, and distracting elements need to be eliminated, for instance, promotional offers. In addition, access to technical support is to be provided so that all users could have an opportunity to ask questions in case of difficulties with maintenance. These measures can make the acceptance and utilization of PHRs more favorable. [5]

Finally, the technical parameters of such a system are an essential criterion for its adoption. In academic literature, different scholars note that storage capacities, stability, update rates, and other factors may influence public interest in PHRs. [6] Accordingly, in order to promote their implementation among patients, it is crucial to develop stably functioning programs with safe algorithms for storing and protecting personal data. This will expand the range of potential users and, at the same time, guarantee the successful adoption of these systems. [5]

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Benefits, Risks, Challenges, and Limitations to Healthcare Information Portals

Introducing the PHR system into general practice can provide a number of significant benefits. For instance, Hill, Smith, Weaver, Nazi, Thomas, Goldstein, et al. [6] note that the possibility of “coordinating information across clinical settings” allows maintaining a high level of provider involvement. Also, the authors [6] argue that on an outpatient basis, these digital applications are a convenient tool for monitoring personal parameters and help patients to control individual health indicators on their own. In case a person intends to control his or her personal data and wants to compare relevant medical interventions with progress in treatment, such information portals are valuable resources. Tethered programs help obtain credible health records, while standalone tools, in turn, may be registered and managed individually. Finally, the ease of use allows storing all the necessary information systematically, which is also an advantage, while comparing PHRs with traditional information systems. [6]

Despite the advantages of these systems, there are some risks in the use of personal information portals. In particular, Hill, Smith, Weaver, Nazi, Thomas, Goldstein, et al. [6] mention the potential threat of data loss due to technical malfunctions. This problem is acute if insufficiently stable operational algorithms are utilized in application development. As a result, valuable information may be lost, which is unacceptable if a patient depends on the stored data. For instance, in the study on the value of PHRs for people with spinal cord injuries, the authors [6] note that regular recording of specific health indicators is an integral element of outpatient treatment. Accordingly, losing the information that cannot be restored may bring problems in the context of the recovery program, and standalone tools are at risk since they are not managed by healthcare providers. Another potential risk is the leak of confidential information and its free access, and tethered PHRs pose such a threat. In a specific scholarly study, there is information that this danger may occur due to poor-quality security policies applied by the developers of EHRs. [6]

In the process of utilizing PHRs, some users may encounter challenges. Despite simple functionality and, as a rule, an intuitive interface, working with such a system can be complicated by a heavy workload. Hill, Smith, Weaver, Nazi, Thomas, Goldstein, et al. [6] indicate “the implications of PHR portal use on time demands and already heavy workloads” caused by an excessive number of users. If appropriate measures are not taken, these difficulties may cause patient dissatisfaction since lengthy data processing and regular disconnections are fraught with the loss of the target audience. Tethered systems connected with EHRs may complicate access to data due to the high activity of a large number of users and server overload. This, in turn, is fraught with losses for providers because, for the target audience, any breakdown in the system can become an incentive to utilize standalone applications. Nevertheless, these tools may also bring challenges because they are not controlled by providers and cannot be coordinated properly if patients enter incorrect data. However, in case of the competent maintenance of such digital portals, these problems are unlikely to arise. [6]

In addition to the challenges, one can note some limitations that may hamper the improvement of information portals. For instance, according to the findings in academic literature, the functionality of tethered services cannot be used without interacting with their providers, which may complicate the use of PHRs by people with low Internet surfing skills. [6] Also, on some platforms, communication with other patients is one of the conditions for working with specific programs. This may be an obstacle for people who are not ready to provide personal data to third parties. Providers’ inability to add the necessary functions for certain categories of patients is a factor that forces some users to abandon standalone PHRs. In the aforementioned study about people with spinal cord injuries, the authors [6] note that it is essential for people with such problems to follow specific training regimes and recovery procedures. Recording all the important outcomes in standalone applications may be difficult due to patient incompetence. Nevertheless, in general, the PHR system is an advanced algorithm with sufficient capabilities and benefits. [6]

Strategies and Outcomes

In order to develop an advanced and efficient PHR system, it is essential to take into account the aforementioned risks and challenges. However, additional strategies should be considered, which may also contribute to presentation information portals with user-friendly interfaces. One of the main aspects to achieve is satisfying the needs of the maximum number of patients by maintaining tethered systems properly. For developers of such applications, it is important to consider that the systematization of personal data carries not only a practical but psychological effect. As Han, Gleason, Sun, Miller, Kang, Chow, et al. [7] argue, as a productive strategy, creating a convenient standalone diary may be realized by adding the function of data exchange with medical providers. Another potentially successful principle of introducing PHRs into general practice is the promotion of such systems in the clinical environment. Despite the fact that in the conditions of inpatient care, interaction with nurses and physicians is regular, participation in the treatment process through individual electronic records can also have a positive effect on patients’ emotional state. These strategies are relevant to the functioning of PHRs and their role in healthcare. [7]

Adding the function of data exchange with medical providers to standalone programs can bring positive results if it is properly implemented. Sawyer [8] states that even in an interactive treatment mode, patients seek communication and feel better if they receive the necessary support and attention from qualified professionals. Some people live in isolation, and based on the study’s assumptions, PHRs with an advanced interface and virtual communication capabilities are valuable tools in maintaining the normal morale of such patients. [8] The outcome of stakeholder participation in the treatment process through individual electronic records can also be positive. Sawyer [8] compares such an activity with “a socio-technical perspective” and notes that patients’ desire to keep individual records of health indicators is natural in view of a conscious aim to recover faster. The opportunities of tethered applications have advanced significantly, and the possibility of utilizing digital applications in question gives people a chance to understand all the stages of medical interventions better. Thus, due to relevant implementation strategies, the PHR system may be a convenient and important mechanism for helping patients of various profiles. [8]

To summarize, one can note that tethered and standalone applications have both proven positive properties and some negative aspects. In the first category, the possibilities of interacting with medical providers and obtaining reliable data are valuable, but there are risks of information leakage and high workload. Standalone programs help protect personal data, but the lack of communication with specialists and the threat of personal health outcomes misinterpretation increase. Therefore, these features should be considered when using specific applications. [8]

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Conclusion

The use of the PHR system for recording personal patient information is a convenient way to store individual data by minimizing errors in treatment modes. The key feature of this algorithm is its confidentiality since only users can access it. In terms of stakeholder needs, these digital applications are valuable tools, although, for medical providers, EHRs are preferable. Despite the benefits of PHRs, some risks and challenges may occur, and the division of these applications into tethered and standalone systems should be considered. In addition, these platforms have limitations that require improvements from developers. The implementation of these systems through relevant strategies can help achieve high patient outcomes and expand the range of potential users.

References
Alanazi A, Al Anazi Y. The challenges in personal health record adoption. J Healthc Manag, 64(2): 104-109.
Gagnon MP, Payne-Gagnon J, Breton E, Fortin JP, Khoury L, Dolovich L, et al. Adoption of electronic personal health records in Canada: perceptions of stakeholders. Int J Health Policy Manag; 5(7): 425-433.
Jimison HB. Ethical issues in consumer health informatics. In: Lewis D, Eysenbach G, Kukafka R, Stavri PZ, Jimison H, editors. Consumer health informatics: informing consumers and improving health care. New York: 2005. p. 143-149.
Mohd Yaacob N, Basari ASH, Salahuddin L, Ghani A, Khanapi M, Doheir M, et al. Electronic personalized health records [e-PHR] issues towards acceptance and adoption. Int J Adv Res Sci Eng Technol, 2019; 28(8): 1-9.
Ozok AA, Wu H, Gurses AP. Exploring patients’ use intention of personal health record systems: implications for design. Int J Hum Comput Interact, 2017; 33(4): 265-279.
Hill JN, Smith BM, Weaver FM, Nazi KM, Thomas FP, Goldstein B, et al. Potential of personal health record portals in the care of individuals with spinal cord injuries and disorders: provider perspectives. J Spinal Cord Med, 2018; 41(3): 298-308.
Han HR, Gleason KT, Sun CA, Miller HN, Kang SJ, Chow S, et al. Using patient portals to improve patient outcomes: systematic review. JMIR Hum Factors, 2019; 6(4): e15038.
Sawyer S. Social informatics and consumer health. In: Lewis D, Eysenbach G, Kukafka R, Stavri PZ, Jimison H, editors. Consumer health informatics: informing consumers and improving health care. New York: 2005. p. 150-161.

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