Personal health records.

To determine the impact of tethered personal health record (PHR) use on patient engagement and intermediate health outcomes among patients with coronary artery disease (CAD). Adult CAD patients (N = 200) were enrolled in this prospective, quasi-experimental observational study. Each patient received a PHR account and training on its use. PHRs were populated with information from patient electronic medical records, hosted by a Health Information Exchange. Intermediate health outcomes including blood pressure, body mass index, and hemoglobin A1c (HbA1c) were evaluated through electronic medical record review or laboratory tests. Trends in patient activation measure® (PAM) were determined through three surveys conducted at baseline, 6 and 12 months. Frequency of PHR use data was collected and used to classify participants into groups for analysis: Low, Active, and Super users. There was no statistically significant improvement in patient engagement as measured by PAM scores during the study period. HbA1c levels improved significantly in the Active and Super user groups at 6 months; however, no other health outcome measures improved significantly. Higher PAM scores were associated with lower body mass index and lower HbA1c, but there was no association between changes in PAM scores and changes in health outcomes. Use of the PHR health diary increased significantly following PHR education offered at the 6-month study visit and an elective group refresher course. The study findings show that PHR use had minimal impact on intermediate health outcomes and no significant impact on patient engagement among CAD patients.

Demand is emerging for personal health records (PHRs), a patient-centric digital tool for engaging in shared decision-making and healthcare data management. This study uses a RE-AIM framework to explore rural patients and providers' perceptions prior to and following implementation of a PHR. Health care providers and their patients were recruited from early-adopter patient medical home clinics and a local patient advisory group. Focus groups were used to explore patient and provider pre-implementation perceptions of PHRs and post-implementation provider perspectives. Patients were invited through participating clinics to use the PHR. An implementation process evaluation was conducted. Multiple methods and data sources were used and included pre-/post-intervention patient surveys, provider interviews, and PHR/EHR administrative data. Both patient and provider focus groups described PHRs as providing a comprehensive health story and enhanced communication. Patients prioritized collection of health promotion data while providers endorsed health-related, clinical data. Both groups expressed the need for managing expectations and setting boundaries on PHR use. The evaluation indicated Reach: 16% of targeted patients participated and an additional 127 patients used the PHR as a tool during the COVID-19 pandemic. Effectiveness: Patient satisfaction with use was neutral, with no significant changes to quality of life, self-efficacy, or patients' activation. Adoption: 44% of eligible clinics participated, primarily those operated publicly versus privately, in smaller communities, and farther from a regional hospital. Implementation: Despite system interoperability expectations, at time of roll out, information exchange standards had not been reached. Additional implementation complications arose from the onset of the pandemic. One clinic on-boarded additional patients resulting in a rapid spike in PHR use. Maintenance: All clinics discontinued PHR within the study period, citing several key barriers to use. RE-AIM offers a valuable process evaluation framework for a comprehensive depiction of impact, and how to drive future success. Interoperability, patient agency and control, and provider training and support are critical obstacles to overcome in PHR implementation.

BackgroundThere are a growing number of children and young people (CYP) with chronic health needs or complex disabilities. Increasingly, CYP with life‐limiting or life‐threatening conditions are surviving into adulthood. Communication between CYP, their family, and health professionals can be challenging. The use of a personal health record (PHR) is one potential strategy for improving communication by promoting CYP's health advocacy skills. However, PHR implementation has proved difficult due to technical, organisational, and professional barriers. The aim of this realist review is to identify the factors, which help or hinder the use of PHRs with CYP living with a complex health condition.MethodsSystematic realist review. Literature was sourced from six databases: Medline, Embase, CINAHL, PsychInfo, The Cochrane Library, and Science Direct (from 1946 to August Week 3 2018). The web was searched to identify grey literature. Articles were sourced from reference lists of included studies. Data were extracted using a standardised data extraction form. Two reviewers completed data extraction and synthesis. Methodological rigor was assessed using the relevant Critical Appraisal Skills Programme tool.ResultsNine articles were included. Contextual factors, which helped implementation, included the CYP having a high perception of need for a PHR and a high level of desire for self‐management. Service providers and CYP need knowledge about the purpose and benefits of the PHR, and organisations need a dedicated person to facilitate PHR use. Mechanisms triggered by the PHR included improved understanding and knowledge of health care condition(s) for CYP, an increased feeling of control over condition(s), and more active engagement in their health care. Outcomes for CYP included improved self‐advocacy and communication.ConclusionClearer definitions of which young people would benefit from using a PHR must be established to inform which organisations and service providers would be best suited to PHR implementation.

Personal health records (PHRs) systems are a subject of intense interest in the move to improve health care through consumer empowerment. Yet, despite a surge of PHR offerings from a variety of providers, little research has been done to learn what prospective users want in a PHR and how they will use these systems. Because managing their personal health care information is a novel undertaking for most people, traditional technology adoption study methods are difficult to employ in researching PHRs. This paper reports on a user-centered design study that combines qualitative and quantitative approaches to investigate how health status may affect user needs for PHR. Preliminary analysis of the results indicates that users with disabilities differ from others in their PHR preferences. The results suggest that a particularly motivating factor for disabled individuals is the way in which a PHR will function when emergency services are required.

BackgroundIn publicly funded health systems, digital health technologies are strategies that aim to improve the quality and safety of health care service delivery and enhance patient experiences and outcomes. In Canada, governments and health organizations have invested in digital health technologies such as personal health records (PHRs) and other electronic service functionalities and innovation across provincial and territorial health systems.ObjectivePatients’ access to their own information via secure, Web-based PHRs and integrated virtual care services are promising mechanisms for supporting patient engagement in health care. We draw on current evidence to develop an economic model that estimates the demonstrated and potential value of these digital health initiatives.MethodsWe first synthesized results from a variety of Canadian and international studies on the outcomes for patients and service providers associated with PHRs across a continuum of services, ranging from viewing information (eg, laboratory results) on the Web to electronic prescription renewal to email or video conferencing with care teams and providers. We then developed a quantitative model of estimated value, grounded in these demonstrated benefits and citizen use (2016-2017). In addition to estimating the costs saved from patient and system perspectives, we used a novel application of a compensating differential approach to assess the value (independent of costs) to society of improved health and well-being resulting from PHR use.ResultsPatients’ access to a range of digital PHR functions generated value for Canadians and health systems by increasing health system productivity, and improving access to and quality of health care provided. As opportunities increased to interact and engage with health care providers via PHR functions, the marginal value generated by utilization of PHR functionalities also increased. Web-based prescription renewal generated the largest share of the total current value from the patient perspective. From the health systems perspective, Canadians’ ability to view their information on the Web was the largest value share. If PHRs were to be implemented with more integrated virtual care services, the value generated from populations with chronic illnesses such as severe and persistent mental illness and diabetes could amount to between Can $800 million and Can $1 billion per year across Canadian health systems.ConclusionsPHRs with higher interactivity could yield substantial potential value from wider implementation in Canada and increased adoption rates in certain target groups—namely, high-frequency health system users and their caregivers. Further research is needed to tie PHR use to health outcomes across PHR functions, care settings, and patient populations.

The personal health record (PHR) is a system that enables borderless medical care services by combining technological innovation and human consideration. This study explored factors affecting the adoption of PHR from technical, medical, and social perspectives according to the Protection Motivation Theory (PMT) and Unified Theory of Acceptance and Use of Technology (UTAUT) model. A survey using a structured questionnaire was subsequently conducted, which produced the following results: (1) The PMT and UTAUT were effective at predicting PHR usage behaviors; (2) Perceived ease-of-use was the most decisive factor influencing the use of PHR, followed by self-efficacy and perceived usefulness; and (3) Behavioral intention for PHR was significantly and positively correlated with usage behavior. From the obtained results, this study recommends that health authorities and medical institutions promote self-efficacy in the use of PHR to improve the levels of behavioral intention and usage behavior among the people. Additionally, medical care institutions are recommended to promote health management and preventive healthcare concepts to help improve public acceptance of the PHR system as a means to self-manage their health. Finally, community centers, medical institutions, and health authorities are urged to work together to enhance public medical knowledge and pool resources for the PHR system, both of which are essential for improving the popularity of the PHR, public quality of life, and the effectiveness of health management.

This paper examines the effectiveness of using personal health records (PHRs), which contains detailed health information to improve the use of recommended screening mammography among women at potential risk for breast cancer. It also explores the potential of PHR in reducing disparities in recommended mammography use experienced by minority and underserved women. The primary data used for this study were obtained from the 2015 Health Information National Trends Survey, and they were supplemented by the 2016 Area Health Resource Files. The study sample included women aged 40-75years with no prior diagnosis of cancer. Because the use of PHRs as a key predictor of breast cancer screening may be endogenously determined, we used the instrumental variable (IV) approach to correct for estimation bias. We found a significant and positive association between the use of PHRs and recommended mammography use among women, with the likelihood of mammography screening increasing with more frequent use of PHRs. Furthermore, the effects of PHR use on mammography screening were found to be greater among Hispanic and Black women and those living in non-metropolitan areas compared with White women and those living in metropolitan areas, respectively. The use of PHRs for health information seeking can empower women at potential risk for breast cancer to participate in recommended screening mammography, particularly among those underserved and racial/ethnic minorities. Policymakers should consider developing policies and programs that can promote PHR use by women, especially medically underserved and minority women.

To design, build, implement, and evaluate a personal health record (PHR), tethered to the Military Health System, that leverages Microsoft® HealthVault and Google® Health infrastructure based on user preference. A pilot project was conducted in 2008-2009 at Madigan Army Medical Center in Tacoma, Washington. Our PHR was architected to a flexible platform that incorporated standards-based models of Continuity of Document and Continuity of Care Record to map Department of Defense-sourced health data, via a secure Veterans Administration data broker, to Microsoft® HealthVault and Google® Health based on user preference. The project design and implementation were guided by provider and patient advisory panels with formal user evaluation. The pilot project included 250 beneficiary users. Approximately 73.2% of users were < 65 years of age, and 38.4% were female. Of the users, 169 (67.6%) selected Microsoft® HealthVault, and 81 (32.4%) selected Google® Health as their PHR of preference. Sample evaluation of users reflected 100% (n = 60) satisfied with convenience of record access and 91.7% (n = 55) satisfied with overall functionality of PHR. Key lessons learned related to data-transfer decisions (push vs pull), purposeful delays in reporting sensitive information, understanding and mapping PHR use and clinical workflow, and decisions on information patients may choose to share with their provider. Currently PHRs are being viewed as empowering tools for patient activation. Design and implementation issues (eg, technical, organizational, information security) are substantial and must be thoughtfully approached. Adopting standards into design can enhance the national goal of portability and interoperability.

Health information technology, applied to electronic health record (EHR), has evolved with the adoption of standards for defining patient health records. However, there are many standards for defining such data, hindering communication between different healthcare providers. Even with adopted standards, patients often need to repeatedly provide their health information when they are taken care of at different locations. This problem hinders the adoption of personal health record (PHR), with the patients' health records under their own control. Therefore, the purpose of this paper is to propose an interoperability model for PHR use. The methodology consisted prototyping an application model named OmniPHR, to evaluate the structuring of semantic interoperability and integration of different health standards, using a real database from anonymized patients. We evaluated health data from a hospital database with 38645 adult patients' medical records processed using different standards, represented by openEHR, HL7 FHIR, and MIMIC-III reference models. OmniPHR demonstrated the feasibility to provide interoperability through a standard ontology and artificial intelligence with natural language processing (NLP). Although the first executions reached a 76.39% F1-score and required retraining of the machine-learning process, the final score was 87.9%, presenting a way to obtain the original data from different standards on a single format. Unlike other models, OmniPHR presents a unified, structural semantic and up-to-date vision of PHR for patients and healthcare providers. The results were promising and demonstrated the possibility of subsidizing the creation of inferences rules about possible patient health problems or preventing future problems.

At present, emerging possibilities for patients to access their health records or health information may potentially lead to changes within the current health care delivery system from an institution-centered to a patient-centered model and an electronic personal health record (PHR) may greatly influence such a shift. However, the use of PHRs does introduce specific challenges in terms of accidental disclosure of or malicious access to an individual’s health data. Hence a high level of security for data access is required due to the sensitivity and confidentiality of the health data in PHRs. In this paper, we present extensible models for defining and configuring fine-grained, role-based access control policies for XML-based portable personal health records using an extended digital certificate approach, called HealthPass which enables flexible and dynamic interactions without using a classical authorization and authentication approach like username and password.

It is obvious that the Personal Health Record (PHR) is a major cornerstone for "improving the self-management of patient". However, lack of an effective and comprehensive personal health record system prohibits the widespread use of PHRs. The aim of this study was to identify the core data sets and required functionalities for designing a PHRs for chronic kidney disease (CKD) management and assess their validity. It was a study including two phases. In the initial phase, a scoping review was conducted with the aim of determination the core data sets and required functionalities for designing PHRs. Then in the second phase, the validity of data items and functionalities was determined by 25 multidisciplinary experts. 22 studies were eligible after screening 1335 titles and abstracts and reviewing 88 full texts. We determined 20 core data set and 8 required functionalities of PHRs. From the perspective of experts, 'health maintenance' and 'advance directives' were most often marked as useful but not essential, while 'test and examination', 'medication list' and 'diagnosis and comorbid conditions" were predominantly considered as essential by all experts (n=25,100%). This research is a step that we have taken to identify prerequisites that could be used for the design, development, and implementation of an effective and comprehensive electronic personal health record.

BackgroundAs a counter-cluster measure to prevent the spread of the infectious novel coronavirus disease (COVID-19), an efficient system for health observation outside the hospital is urgently required. Personal health records (PHRs) are suitable for the daily management of physical conditions. Importantly, there are no major differences between the items collected by daily health observation via PHR and the observation of items related to COVID-19. Until now, observations related to COVID-19 have been performed exclusively based on disease-specific items. Therefore, we hypothesize that PHRs would be suitable as a symptom-tracking tool for COVID-19. To this end, we integrated health observation items specific to COVID-19 with an existing PHR-based app.ObjectiveThis study is conducted as a proof-of-concept study in a real-world setting to develop a PHR-based COVID-19 symptom-tracking app and to demonstrate the practical use of health observations for COVID-19 using a smartphone or tablet app integrated with PHRs.MethodsWe applied the PHR-based health observation app within an active epidemiological investigation conducted by Wakayama City Public Health Center. At the public health center, a list is made of individuals who have been in close contact with known infected cases (health observers). Email addresses are used by the app when a health observer sends data to the public health center. Each health observer downloads the app and installs it on their smartphone. Self-observed health data are entered daily into the app. These data are then sent via the app by email at a designated time. Localized epidemiological officers can visualize the collected data using a spreadsheet macro and, thus, monitor the health condition of all health observers.ResultsWe used the app as part of an active epidemiological investigation executed at a public health center. During the investigation, 72 close contacts were discovered. Among them, 57 had adopted the use of the health observation app. Before the introduction of the app, all health observers would have been interviewed by telephone, a slow process that took four epidemiological officers more than 2 hours. After the introduction of the app, a single epidemiological officer can carry out health observations. The app was distributed for free beginning in early March, and by mid-May, it had been used by more than 20,280 users and 400 facilities and organizations across Japan. Currently, health observation of COVID-19 is socially recognized and has become one of the requirements for resuming social activities.ConclusionsHealth observation by PHRs for the purpose of improving health management can also be effectively applied as a measure against large-scale infectious diseases. Individual habits of improving awareness of personal health and the use of PHRs for daily health management are powerful armaments against the rapid spread of infectious diseases. Ultimately, similar actions may help to prevent the spread of COVID-19.

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Using HL7 FHIR to achieve interoperability in patient health record.

Putting patients in control of their records is one way of promoting patient centred care and patients with chronic health problems may benefit most from personal health records (PHRs). Glaucoma management is often complicated by incomplete understanding and poor adherence to treatment, two areas which a PHR may help to address. This study aimed to discover what patients with glaucoma think about PHRs and what type of information a glaucoma PHR should contain. A consultation exercise using a focus group approach involving 71 participants was undertaken to discuss if a PHR would be useful and what it would be like. Narrative data were collected through written notes and an online forum in addition to transcripts of the focus group feedback session and individual interviews. Recordings were transcribed and analysed with simple thematic analysis facilitated by NVivo software (www.qsrinternational.com). The consultation exercise indicated enthusiasm for PHRs. Views varied on the best format, some participants strongly favoured electronic records and others preferred a low-tech, paper based format. A comprehensive dataset of 24 items was developed which highlighted areas which are not covered by existing guidance to developers. A model for how PHRs may be useful as an education tool in clinical practice was devised. Asking patients what they thought about a glaucoma PHR raised challenging questions and adds perspective to predominantly clinician led development. Listening and responding to such viewpoints is fundamental to developing more patient centred PHRs which may act both as health record and self-care educational tool to promote more holistic, efficient glaucoma care.