The fusion of healthcare and information technology (IT) has ushered in pivotal changes in the modern medical realm. This integration de-centralized the traditional authority of physicians and enhanced patient involvement and self-management capabilities [1]. Moreover, the incorporation of IT spurred the development and dissemination of new medical services and solutions. Amid these transformative shifts, personal health records (PHRs) have emerged as a key tool among various strategies to integrate IT into healthcare, offering tangible benefits to patients. Beyond providing a platform for patients to generate and manage their health information, PHRs encompass a range of convenient features, from accessing medical records to facilitating hospital appointments and billing services. Furthermore, PHRs play a crucial role in expanding the quality and scope of medical services by offering patients access to remote medical services and IT-centric medical initiatives such as virtual clinical trials [2,3].

The utilization of PHRs in healthcare varies substantially, influenced by factors such as national medical cultures, infrastructural differences, and policy frameworks. In contexts where patient autonomy is integral to medical decisionmaking, systems have been developed to empower individuals with PHRs, enabling them to manage their health proactively. The United States established a foundation for PHR adoption through the Health Information Technology for Economic and Clinical Health (HITECH) Act and electronic medical record (EMR) incentive programs. Collaborative efforts in 2010 between the US Department of Veterans Affairs and multiple institutions led to the launch of the “Blue Button” service, which initially targeted veterans. This service, which expanded to all patients by 2013, began by facilitating the exchange of patient information in PDF format [4]. However, it has evolved to support inter-institutional PHR data transfers and integration with third-party applications, thus promoting ongoing personal health data utilization. In the United Kingdom, the National Health Service app allows citizens to access their medical records [5]. Simultaneously, it offers basic medical services such as symptom input, outpatient appointments, and repeat prescription orders. Finland centralized its citizens’ medical records using the Kanta system, allowing data utilization without national reimbursement [6]. Meanwhile, the Netherlands, through the MedMij project, champions the use of wearable devices by third-party vendors for PHRs [7]. Conversely, South Korea primarily adheres to a hospital-linked PHR blueprint. It is worth noting the absence of comprehensive research into the functional deployment of PHRs, especially in crucial domains like medical data interchange and its relay to third-party entities.

This study explored the PHR landscape in Korea using data from the 2020 National Health and Medical Informatization Survey [8]. Through a meticulous assessment of PHRs’ cardinal attributes in practice, we aim to provide stakeholders with robust data to steer dialogues on PHR evolution and its prospective integration into the country’s healthcare system. Our insights are expected to guide and optimize the forthcoming initiatives of Korean PHR firms, health establishments, and the patient community.

The growing integration of IT in healthcare has led to the widespread adoption of PHRs. This has given patients more control over their own health information, which can be empowering. However, different healthcare systems present unique challenges and opportunities for PHRs. In this study, we observed that although up to 66.7% of tertiary hospitals had adopted PHRs, only 58% of these institutions furnished patients with medical information. Thus, the effective adoption rate, which requires patients to be able to access their personal health data, stood at a mere 38.7% [10]. Notably, smaller hospitals demonstrated remarkably lower levels of both PHR adoption and the provision of medical information, implying a notably low level of adoption among local primary care providers. While the most common types of health information provided were test results and medications, downloading the data was not possible in the majority of cases. Consequently, patients were largely restricted to inquiries, resulting in limitations in computable information exchange. Although the essence of PHR involves enabling patients to access, control, manage, and communicate about their health information while also aiding decision-making, the predominant PHRs in Korea remain deficient in these core functionalities. Instead, they appear to emphasize features that cater to hospital administrative conveniences, such as scheduling, billing, and documentation. Mobile PHR services are widely available and have great potential, but their linkage to lifelog data and use in medical treatment are still low.

Tethered mobile PHRs, developed and provided proactively by medical institutions, began in 2010 [11]. The early 2010s saw the beginning of widespread smartphone distribution in Korea [12], and there was a shortage of commercialized health management apps at that time. With the expansion of smartphone users and the explosion of commercial healthcare apps [13], the functionality of hospital PHRs to manage one’s own health information has decreased in significance. Moreover, records of patients’ daily healthcare activities cannot be linked to EMRs, which limits the ability of medical institutions to provide seamless care. This may be due to negative perceptions regarding using patient-generated health data in medical field [14] and lack of motivation. To this end, it is necessary to report on the patient’s usual condition as an area of treatment, use validated patient-reported outcome measure forms [15], patient-generated health data–EMR linkage, and appropriate data curation according to patient diagnosis and clinical context.

Regardless of the size of the medical institution, the clinical information provided at the highest rate through PHR was found to be lab test results. Lab test results furnish important information for clinical decision-making but are limited information in that they must be combined with other information, such as imaging tests and medical personnel’s observations, to determine the patient’s condition correctly. However, lab test results can be delivered in a relatively small amount of structured data compared to information such as imaging tests, pathological tests, and medical personnel’s observations, and the difference between normal and abnormal can be intuitively judged based on the reference range [16]. Indicators that present mid- to long-term status, such as glycated hemoglobin levels in patients with diabetes, can be used as intuitive goals for patients to manage their own health [17,18]. Additional research is needed to investigate the effectiveness of providing test results and determine whether relevant patient education content is appropriately provided according to test results and how it affects patients’ health management behavior.

PHRs can be sustainably developed and provided only when both the interests of medical institutions and the needs of patients are met. Services such as clinic appointment reservations and document issuance provide convenience to patients by increasing service accessibility, which can help the hospital’s profits by reducing personnel needs and recruiting new patients. Some medical institutions only provide these convenient functions without providing health information. The provision of health information in Korea is still insufficient to meet these mutual needs. In the United States, the Fast Healthcare Interoperability Resources (FHIR) standard was developed as part of a government-led emphasis on interoperability, and it became possible to benefit from services such as receiving content based on patients’ self-record information through FHIR-based PHR apps [19] (e.g., Krames On FHIR). In addition, it has been changed to an interoperability promotion program with three levels of meaningful use, and prices are provided based on the 21st Century Cures Act. Patients should be able to experience the usefulness of PHRs led by supporting medical institutions while receiving customized health services, and hospitals should also receive corresponding compensation. Because there is no reward for providing patient information through PHRs, domestic PHRs are still focused on hospital profits, even though patient engagement through PHRs can help improve patient safety and quality of care.

If the interoperability of personal health data is guaranteed, developing services for patients would require fewer resources through open software development. A single medical institution or research institute cannot achieve this alone; it requires government-led initiatives. These initiatives should encourage medical institutions to actively provide patients with medical information through PHRs and to encourage patients to receive services based on their own information. As part of these efforts, in Korea, a PHR based on inter-institution linkage was developed and distributed through the My Health Record app centered on national institutions [20]. This app provides access to diagnosis history, medication history, vaccination history, and more. The data can be linked and utilized in other health apps through app-to-app data linkage. While there is currently no PHR system that allows information exchange between medical institutions, efforts are underway to establish an FHIR-based, subject-centered data movement environment through the MyData project [21]. Furthermore, the revision of the law to include the right to request the transmission of personal health information is drawing attention for its potential impact on the health and medical field.

Currently, the only government support for systems that transmit health information between medical institutions is the Medical Information Exchange Project [22]. My-Healthway (the medical MyData project) represents the first instance of government support for the provision of medical information through PHRs, and the pilot project began in 2021 [20]. Based on the revision of the enforcement ordinance on the right to personal data transmission and portability [23], related research and development projects are expected to increase. However, despite efforts to assist medical institutions in establishing platforms for the provision of medical information through the national MyHealthway project, we are currently unable to guarantee stable and long-term profits akin to those generated by fee-based services. Consequently, it may be challenging to bring about significant short-term changes in the PHR ecosystem that each medical institution has independently constructed. Therefore, an incentive system should be integrated with the MyHealthway project to provide practical assistance in managing national health information.

For hospitals to offer direct or indirect identifiers via PHR and to integrate healthcare services, it is crucial to strictly consider security, consent acquisition, and access authority management. Furthermore, government support is essential for this PHR ecosystem. Beyond national projects aimed at addressing these issues, legal and policy support must be provided to enable the provision of PHR services as an integral part of healthcare services. The FHIR-based MyKanta, utilized by five Nordic countries including Finland, is a national PHR that offers a platform for patients and medical professionals to collaborate. This is achieved by linking health information with social security information [24]. Additionally, Australia’s My Health Record, which was launched in 2012 under the Personally Controlled Electronic Health Record Act, now functions to create and provide records for nearly all citizens through an opt-out method [25]. Therefore, to actively utilize PHR services on a national scale, it is necessary to encourage activation through the evaluation and support of basic function fidelity.