Personal health records: a scoping review

Electronic personal health record systems (PHRs) support patient centered healthcare by making medical records and other relevant information accessible to patients, thus assisting patients in health self-management. We reviewed the literature on PHRs including design, functionality, implementation, applications, outcomes, and benefits. We found that, because primary care physicians play a key role in patient health, PHRs are likely to be linked to physician electronic medical record systems, so PHR adoption is dependent on growth in electronic medical record adoption. Many PHR systems are physician-oriented, and do not include patient-oriented functionalities. These must be provided to support self-management and disease prevention if improvements in health outcomes are to be expected. Differences in patient motivation to use PHRs exist, but an overall low adoption rate is to be expected, except for the disabled, chronically ill, or caregivers for the elderly. Finally, trials of PHR effectiveness and sustainability for patient self-management are needed.     

The Electronic Disability Record: Purpose, Parameters, and Model Use Case

The active engagement of consumers is an important factor in achieving widespread success of health information systems. The disability community represents a major segment of the healthcare arena, with more than 50 million Americans experiencing some form of disability. In keeping with the “consumer-driven” approach to e-health systems, this paper considers the distinctive aspects of electronic and personal health record use by this segment of society. Drawing upon the information shared during two national policy forums on this topic, the authors present the concept of Electronic Disability Records (EDR). The authors outline the purpose and parameters of such records, with specific attention to its ability to organize health and financial data in a manner that can be used to expedite the disability determination process. In doing so, the authors discuss its interaction with Electronic Health Records (EHR) and Personal Health Records (PHR). The authors then draw upon these general parameters to outline a model use case for disability determination and discuss related implications for disability health management. The paper further reports on the subsequent considerations of these and related deliberations by the American Health Information Community (AHIC).     

个人健康记录系统信息模型构建

通过参考CCR的内容结构及苹果应用商店中个人健康记录系统的信息内容,结合国内相关卫生信息规范来定义信息类及数据项,采用双层建模法构建个人健康记录系统的信息模型,根据信息模型和数据项的对应关系形成个人健康记录系统标准化数据内容,包括24个1级信息类,26个2级信息类以及231个数据项,旨在为不同的个人健康记录系统在信息收集、记录及共享的过程中提供一致的数据标准,为个人健康记录系统数据的跨平台传输与共享提供前提。     

Secure Dynamic Access Control Scheme of PHR in Cloud Computing

With the development of information technology and medical technology, medical information has been developed from traditional paper records into electronic medical records, which have now been widely applied. The new-style medical information exchange system "personal health records (PHR)" is gradually developed. PHR is a kind of health records maintained and recorded by individuals. An ideal personal health record could integrate personal medical information from different sources and provide complete and correct personal health and medical summary through the Internet or portable media under the requirements of security and privacy. A lot of personal health records are being utilized. The patient-centered PHR information exchange system allows the public autonomously maintain and manage personal health records. Such management is convenient for storing, accessing, and sharing personal medical records. With the emergence of Cloud computing, PHR service has been transferred to storing data into Cloud servers that the resources could be flexibly utilized and the operation cost can be reduced. Nevertheless, patients would face privacy problem when storing PHR data into Cloud. Besides, it requires a secure protection scheme to encrypt the medical records of each patient for storing PHR into Cloud server. In the encryption process, it would be a challenge to achieve accurately accessing to medical records and corresponding to flexibility and efficiency. A new PHR access control scheme under Cloud computing environments is proposed in this study. With Lagrange interpolation polynomial to establish a secure and effective PHR information access scheme, it allows to accurately access to PHR with security and is suitable for enormous multi-users. Moreover, this scheme also dynamically supports multi-users in Cloud computing environments with personal privacy and offers legal authorities to access to PHR. From security and effectiveness analyses, the proposed PHR access scheme in Cloud computing environments is proven flexible and secure and could effectively correspond to real-time appending and deleting user access authorization and appending and revising PHR records.     

A retrospective look at the predictions and recommendations from the 2009 AMIA policy meeting: did we see EHR-related clinician burnout coming?

Clinicians often attribute much of their burnout experience to use of the electronic health record, the adoption of which was greatly accelerated by the Health Information Technology for Economic and Clinical Health Act of 2009. That same year, AMIA’s Policy Meeting focused on possible unintended consequences associated with rapid implementation of electronic health records, generating 17 potential consequences and 15 recommendations to address them. At the 2020 annual meeting of the American College of Medical Informatics (ACMI), ACMI fellows participated in a modified Delphi process to assess the accuracy of the 2009 predictions and the response to the recommendations. Among the findings, the fellows concluded that the degree of clinician burnout and its contributing factors, such as increased documentation requirements, were significantly underestimated. Conversely, problems related to identify theft and fraud were overestimated. Only 3 of the 15 recommendations were adjudged more than half-addressed.     

Formative Evaluation: A Critical Component in EHR Implementation

This Viewpoint paper has grown out of a presentation at the American College of Medical Informatics 2007 Winter Symposium, the resulting discussion, and several activities that have coalesced around an issue that most informaticians accept as true but is not commonly considered during the implementation of Electronic Health Records (EHR) outside of academia or research institutions. Successful EHR implementation is facilitated and sometimes determined by formative evaluation, usually focusing on process rather than outcomes. With greater federal funding for the implementation of electronic health record systems in health care organizations unfamiliar with research protocols, the need for formative evaluation assistance is growing. Such assistance, in the form of tools and protocols necessary to do formative evaluation and resulting in successful EHR implementations, should be provided by practicing medical informaticians.     

Organizational strategies for promoting patient and provider uptake of personal health records

Objective To investigate organizational strategies to promote personal health records (PHRs) adoption with a focus on patients with chronic disease.Methods Using semi-structured interviews and a web-based survey, we sampled US health delivery organizations which had implemented PHRs for at least 12 months, were recognized as PHR innovators, and had scored highly in national patient satisfaction surveys. Respondents had lead positions for clinical information systems or high-risk population management. Using grounded theory approach, thematic categories were derived from interviews and coupled with data from the survey.Results Interviews were conducted with 30 informants from 16 identified organizations. Organizational strategies were directed towards raising patient awareness via multimedia communications, and provider acceptance and uptake. Strategies for providers were grouped into six main themes: organizational vision, governance and policies, work process redesign, staff training, information technology (IT) support, and monitoring and incentives. Successful organizations actively communicated their vision, engaged leaders at all levels, had clear governance, planning, and protocols, set targets, and celebrated achievement. The most effective strategy for patient uptake was through health professional encouragement. No specific outreach efforts targeted patients with chronic disease. Registration and PHR activity was routinely measured but without reference to a denominator population or high risk subpopulations.Discussion and conclusion Successful PHR implementation represents a social change and operational project catalyzed by a technical solution. The key to clinician acceptance is making their work easier. However, organizations will likely not achieve the value they want from PHRs unless they target specific populations and monitor their uptake.     

患者共享个人健康档案数据意愿实证研究

目的：通过调查影响个人健康档案数据共享的因素,调动患者共享个人健康档案数据的积极性。方法：以隐私计算理论为基础,构建患者个人健康档案数据共享意愿模型,收集了400份社区居民数据调查问卷,利用SPSS和AMOS进行因子分析和路径分析,检验所提出的假设。结果：感知隐私风险、信任和利他主义是患者个人健康档案数据共享意愿的影响因素,其中利他主义的影响最强烈。结论：要提高患者的共享个人健康档案数据意愿,最重要的是处理好其共享公益特性和共享风险担忧之间的关系。患者的共享个人健康档案数据意愿不受感知利益的影响是样本代表性问题还是因为相关变量在个人健康档案领域出现了特殊结果,还需要更多类似研究加以证明。     

Informatics,evidence-based care,and research; implications for national policy: a report of an American Medical Informatics Association health policy conference

There is an increased level of activity in the biomedical and health informatics world (e-prescribing, electronic health records, personal health records) that, in the near future, will yield a wealth of available data that we can exploit meaningfully to strengthen knowledge building and evidence creation, and ultimately improve clinical and preventive care. The American Medical Informatics Association (AMIA) 2008 Health Policy Conference was convened to focus and propel discussions about informatics-enabled evidence-based care, clinical research, and knowledge management. Conference participants explored the potential of informatics tools and technologies to improve the evidence base on which providers and patients can draw to diagnose and treat health problems. The paper presents a model of an evidence continuum that is dynamic, collaborative, and powered by health informatics technologies. The conference''s findings are described, and recommendations on terminology harmonization, facilitation of the evidence continuum in a “wired” world, development and dissemination of clinical practice guidelines and other knowledge support strategies, and the role of diverse stakeholders in the generation and adoption of evidence are presented.     

The population health record: concepts, definition, design, and implementation

In 1997, the American Medical Informatics Association proposed a US information strategy that included a population health record (PopHR). Despite subsequent progress on the conceptualization, development, and implementation of electronic health records and personal health records, minimal progress has occurred on the PopHR. Adapting International Organization for Standarization electronic health records standards, we define the PopHR as a repository of statistics, measures, and indicators regarding the state of and influences on the health of a defined population, in computer processable form, stored and transmitted securely, and accessible by multiple authorized users. The PopHR is based upon an explicit population health framework and a standardized logical information model. PopHR purpose and uses, content and content sources, functionalities, business objectives, information architecture, and system architecture are described. Barriers to implementation and enabling factors and a three-stage implementation strategy are delineated.     

m<Superscript>2</Superscript>-ABKS: Attribute-Based Multi-Keyword Search over Encrypted Personal Health Records in Multi-Owner Setting

Online personal health record (PHR) is more inclined to shift data storage and search operations to cloud server so as to enjoy the elastic resources and lessen computational burden in cloud storage. As multiple patients’ data is always stored in the cloud server simultaneously, it is a challenge to guarantee the confidentiality of PHR data and allow data users to search encrypted data in an efficient and privacy-preserving way. To this end, we design a secure cryptographic primitive called as attribute-based multi-keyword search over encrypted personal health records in multi-owner setting to support both fine-grained access control and multi-keyword search via Ciphertext-Policy Attribute-Based Encryption. Formal security analysis proves our scheme is selectively secure against chosen-keyword attack. As a further contribution, we conduct empirical experiments over real-world dataset to show its feasibility and practicality in a broad range of actual scenarios without incurring additional computational burden.     

American College of Medical Informatics Fellows and International Associates, 2008

In 2008, 11 new fellows were elected to the American College of Medical Informatics, and were inducted into the College at a ceremony held in conjunction with the American Medical Informatics Association conference in Washington, DC on Nov 9, 2008. A brief synopsis of the background and accomplishments of each of the new fellows is provided here, in alphabetical order.     

The Top 100 Articles in the Medical Informatics: a Bibliometric Analysis

The number of citations that a research paper receives can be used as a measure of its scientific impact. The objective of this study was to identify and to examine the characteristics of top 100 cited articles in the field of Medical Informatics based on data acquired from the Thomson Reuters’ Web of Science (WOS) in October, 2016. The data was collected using two procedures: first we included articles published in the 24 journals listed in the “Medical Informatics” category; second, we retrieved articles using the key words: “informatics”, “medical informatics”, “bi?omedical informatics”, ”clinical informatics” and “health informatics”. After removing duplicate records, articles were ranked by the number of citations they received. When the 100 top cited articles had been identified, we collected the following information for each record: all WOS database citations, year of publication, journal, author names, authors’ affiliation, country of origin and topics indexed for each record. Citations for the top 100 articles ranged from 346 to 7875, and citations per year ranged from 11.12 to 525. The majority of articles were published in the 2000s (n=43) and 1990s (n=38). Articles were published across 10 journals, most commonly Statistics in medicine (n=71) and Medical decision making (n=28). The articles had an average of 2.47 authors. Statistics and biostatistics modeling was the most common topic (n=71), followed by artificial intelligence (n=12), and medical errors (n=3), other topics included data mining, diagnosis, bioinformatics, information retrieval, and medical imaging. Our bibliometric analysis illustrated a historical perspective on the progress of scientific research on Medical Informatics. Moreover, the findings of the current study provide an insight on the frequency of citations for top cited articles published in Medical Informatics as well as quality of the works, journals, and the trends steering Medical Informatics.     

Confidentiality Protection of Digital Health Records in Cloud Computing

Electronic medical records containing confidential information were uploaded to the cloud. The cloud allows medical crews to access and manage the data and integration of medical records easily. This data system provides relevant information to medical personnel and facilitates and improve electronic medical record management and data transmission. A structure of cloud-based and patient-centered personal health record (PHR) is proposed in this study. This technique helps patients to manage their health information, such as appointment date with doctor, health reports, and a completed understanding of their own health conditions. It will create patients a positive attitudes to maintain the health. The patients make decision on their own for thoese whom has access to their records over a specific span of time specified by the patients. Storing data in the cloud environment can reduce costs and enhance the share of information, but the potential threat of information security should be taken into consideration. This study is proposing the cloud-based secure transmission mechanism is suitable for multiple users (like nurse aides, patients, and family members).     

从论文检索谈医院信息化发展动向

目的：了解和分析国内外医院信息化发展的动向和热点。方法：以Hospital Informatics和Medical Informatics为关键词,利用ISI Web of Science检索SCI论文,并对检出文献集中的两本杂志近年来相关论文进行了检索和分析。结果：共检出医院信息化密切相关论文100多篇,内容涉及医疗卫生信息化、电子病历、临床信息系统等。结论：从论文具体内容看用药安全与管理、电子病历开发与应用是当前医院信息化的热点。     

The military health system's personal health record pilot with Microsoft HealthVault and Google Health

Objective

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.

Materials and methods

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.

Results

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.

Discussion

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.

Conclusion

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.     

Consumer Support for Health Information Exchange and Personal Health Records: A Regional Health Information Organization Survey

In order to characterize consumer support for electronic health information exchange (HIE) and personal health records (PHRs) in a community where HIE is underway, we conducted a survey of English speaking adults who visited primary care practices participating in a regional community-wide clinical data exchange, during August, 2008. Amongst the 117 respondents, a majority supported physicians’ use of HIE (83%) or expressed interest in potentially using PHRs (76%). Consumers’ comfort sending personal information electronically over the Internet and their perceptions regarding the potential benefits of HIE were independently associated with their support for HIE. Consumers’ prior experience using the Internet to manage their healthcare, perceptions regarding the potential benefits of PHRs and college education were independently associated with potential PHR use. Bolstering consumer support for HIE and PHRs will require addressing privacy and security concerns, demonstrating clinical benefits, and reaching out to those who are less educated and computer literate.     

The future of health IT innovation and informatics: a report from AMIA's 2010 policy meeting

While much attention has been paid to the short-term impact that widespread adoption of health information technology (health IT) will have on the healthcare system, there is a corresponding need to look at the long-term effects that extant policies may have on health IT system resilience, innovation, and related ethical, social/legal issues. The American Medical Informatics Association's 2010 Health Policy Conference was convened to further the national discourse on the issues surrounding these longer-term considerations. Conference participants self-selected into three broad categories: resilience in healthcare and health IT; ethical, legal, and social challenges; and innovation, adoption, and sustainability. The discussions about problem areas lead to findings focusing on the lack of encouragement for long-term IT innovation that may result from current health IT policies; the potential impact of uneven adoption of health IT based on the exclusions of the current financial incentives; the weaknesses of contingency and risk mitigation planning that threaten system resilience; and evolving standards developed in response to challenges relating to the security, integrity, and availability of electronic health information. This paper discusses these findings and also offers recommendations that address the interwoven topics of innovation, resilience, and adoption. The goal of this paper is to encourage public and private sector organizations that have a role in shaping health information policy to increase attention to developing a national strategy that assures that health IT innovation and resilience are not impeded by shorter-term efforts to implement current approaches emphasizing adoption and meaningful use of electronic health records.