Toward a Model for Personal Health Record Interoperability.

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.

Problem: "Does the use of PHR improve the health of their users?" Background: The Personal Health Record (PHR) is an electronic application through which individuals can manage and share their lifelong health information. An immediate source of reliable information concerning the past health conditions of the patient might enable the physician to make more accurate diagnosis, preventing medical error. Although PHRs can be shared with health providers, they are used by the patient for self-care and record keeping, matching population’s growing demand to play an active role in their health care. Aim: Our study aims to understand the impact of PHRs on patient’s health. Methods: A systematic review was performed. The unit of analysis was original articles evaluating the impact of PHRs. The sources of information were Pubmed, ISI and Scopus. A hand search was not performed. The articles were analysed considering the study type; PHR’s characteristics; patient’s description, health status, opinion and response; the costs and doctor-patient communication. We set our inclusion and exclusion criteria. The inclusion criteria were articles that evaluated the benefits of PHRs in health care; their effect on certain diseases or populations; their acceptance among populations; articles that reported PHRs as a tool for the physician or evaluated them as a bridge between patient and physician. Exclusion criteria: articles dated before 1990, with no available 2 abstract, not written in English or Portuguese, about electronic systems of health care providers or electronic health records. From the 698 articles, only 158 full-texts fulfilled the inclusion and exclusion criteria. They were read and confronted with our variables. We got results from 44 papers. SPSS® was used to perform all needed statistical analysis. Results: We obtained the frequencies of all variables, performed one smaple t-tests and chi-square tests. We considered as statistically significant results with p<0.05. We observed that this is a topic increasingly discussed in the scientific community, as the number of papers increased exponentially since 2005. Internet PHRs are the most used, followed by paper-based and USB-pen ones. Most PHRs were supported by medical. Many PHRs are used in the treatment of chronic diseases. PHRs improved the use of medication and patient/doctor relation. Conclusion: The results obtained allow us to conclude that PHRs, in fact, improve the health of their users, confirming our belief that further research would be extremely relevant. KEY-WORDS Personal Health Records; Personal Child Health Records; PHR; Health Impact.

Using HL7 FHIR to achieve interoperability in patient health record.

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.

BackgroundThe recent, rapid development of digital technologies offers new possibilities for more efficient implementation of electronic health record (EHR) and personal health record (PHR) systems. A growing volume of healthcare data has been the hallmark of this digital transformation. The large healthcare datasets' complexity and their dynamic nature pose various challenges related to processing, analysis, storage, security, privacy, data exchange, and usability. Materials and MethodsWe performed a systematic review of systematic reviews to assess technological progress in EHR and PHR systems. We searched MEDLINE, Cochrane, Web of Science, and Scopus for systematic literature reviews on technological advancements that support EHR and PHR systems published between January 1, 2010, and October 06, 2020. ResultsThe searches resulted in a total of 2,448 hits. Of these, we finally selected 23 systematic reviews. Most of the included papers dealt with information extraction tools and natural language processing technology (n = 10), followed by studies that assessed the use of blockchain technology in healthcare (n = 8). Other areas of digital technology research included EHR and PHR systems in austere settings (n = 1), de-identification methods (n = 1), visualization techniques (n = 1), communication tools within EHR and PHR systems (n = 1), and methodologies for defining Clinical Information Models that promoted EHRs and PHRs interoperability (n = 1). ConclusionsTechnological advancements can improve the efficiency in the implementation of EHR and PHR systems in numerous ways. Natural language processing techniques, either rule-based, machine-learning, or deep learning-based, can extract information from clinical narratives and other unstructured data locked in EHRs and PHRs, allowing secondary research (i.e., phenotyping). Moreover, EHRs and PHRs are expected to be the primary beneficiaries of the blockchain technology implementation on Health Information Systems. Governance regulations, lack of trust, poor scalability, security, privacy, low performance, and high cost remain the most critical challenges for implementing these technologies.

An Analysis of the Adoption of Digital Health Records under Switching Costs

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.

Electronic Health Records: Promises and Realities: A 3-Part Series Part I: The Digital Sea Change, Ready or Not

Sophisticated methodological approaches and measures for scaling up are key elements of effective evaluation Digital health technologies and services are significant contributors to the transformation of health care delivery. It has been estimated that 80% of technology projects fail1 due to uncertainty, abandonment and lack of organisational willingness to adopt.2 In response to the high failure rate, the discipline of benefits management has emerged, with the aim of measuring and optimising the value of digital health initiatives. The development and application of benefits management has received some attention,3 but owing to the infancy of the discipline there has been limited assessment of methodological frameworks and their application. In this article, we describe the framework that is being used to measure and quantify the benefits of the My Health Record system in Australia. We consider the strengths and limitations of this framework in the context of existing frameworks, and its ability to demonstrate digital health system benefits. We also identify priority areas for further development of digital health benefit evaluation frameworks. Further, we provide an overview of the approach to digital health system benefits evaluation in Australia, in the context of the My Health Record system. A role of the Australian Digital Health Agency has been to lead the development of the National Digital Health Strategy, to lay the foundations for a safe, seamless and secure health system.4 This strategy comprises seven priority areas to be achieved by 2022. A key strategic priority is to provide health information whenever and wherever it is needed, and this is underpinned by the My Health Record system. My Health Record is a secure online summary of health information which can be accessed by people and their health care providers, and is patient-controlled. It is a personal health record, enabling people to access, manage and share their health information with their clinicians using a range of privacy controls. This functionality includes the ability to decline access to specific documents, set a control to restrict access to the entire record, see an audit trail of any organisations that have accessed the record, and block organisations from viewing the record. The record can contain summary information from general practice, hospital, pharmacy and other health care settings. It may also contain results of investigations, plus documents that patients create themselves (such as advance care plans and personal notes). In addition, it can provide access to Medicare documents such as Medicare Benefits Schedule and Pharmaceutical Benefits Scheme information, the Australian Immunisation Register and the Australian Organ Donor Register. A multimethod evaluation framework has been developed to comprehensively evaluate the benefits of the My Health Record system. It draws on approaches that have been used overseas and assesses the range of clinical contexts in which the system is used. Connecting people to their own health information has been shown to produce a range of benefits relating to patient engagement and a 60–80% improvement in their adherence to treatment regimens.5 In addition, enabling self-management has been associated with significant financial savings in terms of health care costs and avoided hospital admissions.6 It is also theorised that enabling clinicians across different health care settings to share information will result in improved patient safety (eg, fewer medication errors), improved care coordination, a reduction in unnecessarily duplicated investigations, and efficiency gains for clinicians in terms of time savings. In Australia, 2–3% of hospital admissions each year relate to medication misadventure, costing an estimated $1.2 billion annually.7 Improved access to medication information from a range of settings through the medicines information view in My Health Record should provide clinicians with more comprehensive information, and it is hoped that this will result in a reduction of medication misadventure events. Moreover, the use of digital health records to enable test results to be shared has been shown to reduce duplicated pathology tests by 18% per week,8 and in primary care settings it has been found that 13.6% of visits were missing important clinical information.9 Several lessons relating to the application of digital health research and evaluation frameworks have been learned. Many different "key measures" have been described, and there is an overall lack of consensus as to the "who, why, how, when and what" that should apply to an evaluation.10 The impact of this has been a failure to capture the complete range of players involved in the successful delivery of a system — players who do not necessarily share identical perspectives. A recent systematic review recommends that future frameworks present better methods for stakeholder identification and have a greater focus on understanding the context in which the system is delivered. From a systems perspective, this includes usability and organisational impact.10 The foundations of Australia's digital health system benefits evaluation framework are based on applying a range of measurement methods to capture a broad variety of outcome measures, reflecting a multistakeholder National Digital Health Strategy which offers different types of benefits to its different stakeholders. Five benefit workstreams have been introduced to evaluate the My Health Record system using qualitative, quantitative and mixed-method designs, as well as behavioural economic and health economic evaluation methods (Box). These workstreams are: Perceived improvement in access to patients' information and reduction in the need to order pathology tests and diagnostic imaging Self-reported experience of being able to view information that was previously unknown, and saving time requesting information Reduction in adverse medicine-related events through having access to a patient's medicines information Reduction in unnecessary duplication of pathology tests and diagnostic imaging The workstreams have been designed with data sources in mind to assist with planning and prioritising evaluation measures. These have been ranked by feasibility11 and impact, taking into account the relative importance of each measure to different stakeholders.10 To support two of these workstreams — customer and market insights, and impact evaluations — we have taken a similar approach to Canada's Clinical Adoption Framework.3 The impact evaluations workstream in particular focuses on outcomes and how these are being realised. For example, it focuses on measuring usability and adoption of digital tools from clinicians and consumers from their inception and throughout their development. The behavioural economics workstream refers to the evaluation methods which aim to measure change in the behaviour of system users (eg, clinicians and patients), organisational issues which can affect adoption, and indicators that would inform change management requirements to improve usability and adoption of digital health services.12 The data analytics workstream enables monitoring of trends in adoption and usage. For example, this workstream is investigating, through data modelling, whether My Health Record use is associated with fewer medication errors and reduced unnecessary duplication of pathology tests, to provide comprehensive results from a range of settings. The health economics evaluations workstream evaluates and forecasts indirect population health outcomes and downstream economic benefits using health economics modelling. For example, it is developing a health economics model to inform the ongoing business case for the My Health Record system, and conducting modelling that will support measurement of current and future benefits. To support an iterative process in product and service design, the Australian Digital Health Agency also undertakes user experience research and agile project management methods.13 The advantage of this approach is that it can deliver user insights which inform continual design and development of new features. Further, conducting field research to observe a range of digital system users in their environment is a way of identifying attributes that can influence the methods and measures used more broadly in our benefits evaluation framework. Current approaches and frameworks that have been developed overseas to support evaluation and benefits measurement of digital health services are at various stages of maturity. An increasing range of methods to evaluate digital health technologies is being supported by publications, which recognise that they are being deployed in complex health systems that require a contextual understanding of users, clinical settings and the policy environment in which they operate. We must not underestimate the challenges of evaluating benefits of digital health system delivery, and new methods to support evaluations continue to be developed and validated.2 Benefits evaluation frameworks offer a platform that can guide researchers and policy makers in generating and translating evidence to support future directions and ongoing investment in digital health services. Recent debates highlight the importance of fostering evaluation designs which combine different research methods, using qualitative, quantitative and co-design principles, as well as process measures1 that we have embedded into our benefits framework. To strengthen our current benefits evaluation framework and overall approach to digital health service evaluation, we are actively introducing methods that ascertain how services can be scaled up, to identify enablers and barriers to implementation across a range of settings.1 In this context, we define scalability as "the ability … to be expanded under real-world conditions to reach a greater proportion of the eligible population, while retaining effectiveness".14 Measuring scalability is not a commonly undertaken process and has been described as poorly understood.15 But the Australian Digital Health Agency is working towards applying these methods to build an understanding of impact. These findings form a picture of how, where and for whom the intervention could have the greatest impact and, conversely, what adaptations are needed for interventions to work across different population groups. A practical example of how this is being undertaken through the Agency is the introduction of and investment in a range of "test bed" studies. Test beds are projects assessing new digital-enabled models of care that are instigated and delivered cooperatively through sustainable and viable partnerships between industry, government and other organisations. Their purpose is to promote innovation to address Australia's highest priority health challenges and generate evidence on how the new approaches improve health outcomes. Currently, there are 15 test beds across Australia which are testing digital infrastructure and integration of digital health into clinical workflows.16 Despite ongoing interest in digital health benefits evaluation frameworks, few examples of their use in evaluation of digital health services have been published. The Australian Digital Health Agency's benefits evaluation framework will be used to justify future funding of digital health and to inform community and clinical education material. Moreover, the findings will be used to inform enhancements of the My Health Record system, ensuring that its progress is relevant and appropriate for clinicians and consumers. We are grateful to Darian Eckersley, from the Australian Digital Health Agency, for advice on product design methods. Many thanks to the broader Research Programs team at the Agency for reviewing parts of this manuscript and commenting on an earlier version. We are all employed by the Australian Digital Health Agency. Commissioned; externally peer reviewed.

The extensible Markup Language (XML) has wide usage in healthcare to facilitate health information exchange via the Continuity of Care Record (CCR) for storing/managing patient data, diagnoses, medical notes, tests, scans, etc. Health IT products like electronic health record (EHR, e.g., GE Centricity) and personal health record (PHR, e.g., MS Health Vault) use CCR for data representation. To manage patient data in CCR, security as governed by HTPAA must be attained when using XML and its technologies (XACML, XSLT, etc.). Our objective is to have an XML document (CCR instance) appear differently to authorized users at different times based on a user's role, constraints, separation of duty, delegation of authority, etc. In this paper, we propose a security framework that targets XML schemas and documents, in general, and CCR schemas and documents, in particular with control capabilities that achieve customizable access to an XML document's elements by applying secure software engineering methodologies and defining new UML XML-focused diagrams for schemas and permissions. This allows us to generate XACML policies, and enforce security at the runtime level on XML instances to insure that correct and required patient data is securely delivered. In a market of rapidly emerging mobile healthcare applications to allow patients to manage their own data (PHRs) and for self-management of chronic diseases, the need for secure access to information and its authorization and transmission to providers (and EHRs) will be critical.

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.

Adoption and user perceptions are dominant on personal health records literature and have led to a better understanding of what individuals' behaviors and perceptions are about the adoption of personal health records. However, these insights are descriptive and are not actionable to allow creating personal health records that will overcome the adoption problems identified by users. This study uses action design research to provide actionable knowledge regarding user perceptions and adoption and their application in the case of the digital allergy card. To achieve this, we conducted interviews with patients and physicians as part of the evaluation of the digital allergy card mock-up and the first prototype. As results, we provided some research proposals regarding the benefits of, levers for, and barriers to adoption of the digital allergy card that can be tested for several other personal health records.

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.

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.

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.