Bio-medical Ontologies Maintenance and Change Management

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Design of an Online Physician-Mediated Personal Health Record System 267 the other hand, while PHR enables personalized self-management of health-related information, it has been kept independently of hospital EMR systems. This division between EMR and PHR has created challenges for individuals to access vast amount of information already available from different hospital systems for selfcare and error-checking. It also restricted the ability of medical professionals to improve quality of services and for patients and health-care professionals to keep disease care communication channel open outside of the health care service environment. Therefore, it has become critical that a new health and disease electronic data management paradigm should emerge. 2 Background Creating and maintaining an accurate PHR system connected to backend EMR systems from different sources for health-conscious individuals have the clear benefits of enabling patient self-education and error-preventation. It also remains an active challenging research topic for the following reasons: First, the current process of obtaining EMR by individual patients is still a slow and manual process, because the care providers moving information from EMR into PHR need to abide by HIPAA rules. Every patient has the right to receive copies of personal health records, if the patient completes and submits an “authorization for release of information” form to the service provider (for an example, visit http://www.myphr.com). The health care providers need to document the entire authorization process and keep the patient’s EMR records private and confidential from each other unless they are explicitly released by patients. [5] The manual authentication and approval process takes time and may curb most patients‘ desire to explore their EMR for health-related questions. Second, current EMR systems have not been designed with individual patients as end users in mind. To consider access of EMR by patients, many information systems design choices, e.g., privacy vs. accessibility, functionality vs. usability, guided vs. Un-guided, have to be carefully made. To protect patient privacy, confidentiality and integrity of PHR, appropriate security measures have to be incorporated. Accessibility of PHR with a patient‘s consent to other care provider‘s EMR would also be ideal. Some patients may need to access their EMR from their PHR system, which is extremely difficult to perform because the lack of data standards and software interoperability among different EMR and PHR software systems. Self-service may be preferred by the system designers because the cost of human intervene is reduced; however, as the quality of software-based services are not good enough to help patient users achieve satisfaction, guided online service may be preferred. Therefore, involvement of medical professionals, physicians and nurses, are necessary features to consider building in order to promote instead of demote communications between patients and physicians. The system architect needs to make make such decisions to find a balance between feature offering and system usability within patient groups. Third, social-economic factors, policy, and life-style choices may all contribute to the interruption of integration between EMR and PHR. Individuals with issues of mental health, ADHD, drug and alcohol problems, for example, may be less likely to manage their personal records well than professionals with diabetic
268 J.Y. Chen, S. Taduri, and F. Lloyd concerns. The service providers must take these factors into great consideration when designing new systems. Economic factors such as the affordability to use the designed systems should also be taken into account. Due to technology uncertainty, policy makers may also institute rules that further constraints the current EMR systems from being accessed outside of its designed users—doctors and health care professionals. On the other hand, each individual has a different life-style choice when it comes to maintaining personal health. Some are very health-conscious and be more willing to accept temporary function deficiency of a developing system than others. Some patients are keenly focused on only certain health conditions such as tracking blood sugar and cholesterol levels and others may have different preferences. It’s not clear whether an initial system launched may be well received immediately among the anticipating end user community. To address these challenges, several exploratory systems have been reported. PING (Personal Internetworked Notary and Guardian) is a framework proposed to address the suggested need.[6] It is designed to be a secure and scaleable software paltform for archival PHRs. The architecture of PING is based on http protocols, XML data structure, and public-key cryptography to grant patients secure control over their medical data online. The PING architecutre also includes a role-based authorization scheme to assign access privileges, allowing different clinical researchers, physicians, and medical professionals to work together without comprosing patient’s privacy. In addition to the basic architecture, it also comes with software tool to populate the patient's record migrated from EMRs. However, it remains largely a research prototype and few realword applications have been developed with this architecture, largely due to rapid development of web-based software system fueld by the Internet boom. MyPHR.com (http://www.myphr.com) takes a web portal approach to building consumer-oriented PHRs connected to EMRs. The system is developed by the American Health Information Management Association. The Internet-based PHR portals such as MyPHR.com provide lots of information on how to collect an individual’s own medical records from EMRs through self-guided tutorials. Sophisticated software features are also being developed to support personal online tracking of health vital measures and medications. However, studies showed such PHRs have too limited functionality and relevant medical history to be useful on daily basis to most individuals. [7] IHealthRecord (www.ihealthrecord.org) is a recent successful model that tries to make up for the deficiency of simple online PHR portals. The IHealthRecords system is co-developed by the joint work between the private Medem network and leading US medical societies. The most distinctive feature of the system is that it promotes physician and patient communication by extending health management outside of the confines of hospitals. Physicians and patients may send messagings and alert to each other of upcoming events to improve medical office efficiency and patient revenues for the physicians, and to allow sharing of patient health information with their physicians during emergency. While the concept is exciting, the architecture and information model are controlled by the Medem network—not based on open standards. Therefore, it is not clear how the individuals may port their health information at IHealthRecord to other future PHR portals should he/she desires so. The information that patient can pull from
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Amandeep S. Sidhu and Tharam S. Dil
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Amandeep S. Sidhu and Tharam S. Dil
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Preface The molecular biology commu
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Preface VII biomedical systems, and
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X Contents Mining Clinical, Immunol
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2 A.S. Sidhu, M. Bellgard, and T.S.
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Towards Bioinformatics Resourceomes
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2 The New Waves Towards Bioinformat
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2.4 Semantic Web Towards Bioinforma
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A Summary of Genomic Databases: Ove
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Appendix A Summary of Genomic Datab
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Protein Data Integration Problem Am
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Protein Data Integration Problem 57
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Fig. 3. Class Hierarchy of Protein
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Bio-medical Ontologies Maintenance
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TextToOnto (Maedche and Volz 2001)
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Extraction of Constraints from Biol
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Classifying Patterns in Bioinformat
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Mining Clinical, Immunological, and
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Genetic Algorithm in Ab Initio Prot
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Author Index Apiletti, Daniele 169
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Bio-medical Ontologies Maintenance and Change Management

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