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IMIA Yearbook of Medical Informatics 2009
© 2009 IMIA and Schattauer GmbH
Summary
Objective: Increasing patient demand for convenient access to their own healthcare data has led to more personal use of the Electronic Health Record (EHR). With "consumer empowerment" being an important issue of EHR, we are seeing a more "patient-centric" ap-proach of EHR from countries around the world. Researchers have reported on issues in EHR sharing including concerns on privacy and security, consumer empowerment, competition among providers, and content standards. This study attempts to analyze prior research and to synthesize comprehensive, empirically-based conceptual models of EHR for personal use.
Methods: We use "B2C(2B)" to represent this new behavior of EHR sharing and exchange, with "consumer" in the center stage. Results: Based on different information sharing mechanisms, we summarized the "B2C(2B)" behavior into three models, namely, the Inexpensive data media model, the Internet patient portal model and the Personal portable device model. Models each have their own strengths and weaknesses in their ways to share patient data and to address privacy and security concerns.
Conclusion: Personal use of EHR under the B2C(2B) model does look promising based on our study. We started to observe a trend that governments around the world are embarking on related projects. With multiple stake-holders involved, we are only beginning to understand the complexity of such undertakings.
Keywords
Electronic health records, EHR, personal health record, PHR Yearb Med Inform 2009: 40-3
Electronic Health Record Goes Personal World-wide
YC Li
1, PS Lee
2, WS Jian
3, CH Kuo
41
Graduate Institute of Biomedical Informatics, Taipei Medical University, Taipei, Taiwan
2Institute of Biomedical Informatics, National Yang-Ming University, Taipei, Taiwan
3School of Health Care Administration, Taipei Medical University, Taipei, Taiwan
4Department of Information Management, National Taiwan University, Taipei, Taiwan
1. Background
The evolution from an institutional Computerized Patient Record (CPR) to a longitudinal and cross-institution Electronic Health Record (EHR), and further to a Personal Health Record (PHR) that integrates life-style, nutri-tional and self-measured health param-eters is becoming a pervasive concept in recent years. An EHR system enables physicians to view patients’ data from multiple sources across a period of time for comprehensiveness and continuity of care. On the other hand, increasing patient demand for convenient access to their own healthcare data has led to more personal use of the Electronic Health Record (EHR) [1,2]. With “con-sumer empowerment” being an impor-tant issue of EHR, we are seeing a more “patient-centric” approach of EHR from countries around the world. Studies show that proper use of EHR can decrease medical errors [3,4], facilitate the detec-tion of adverse health events [5], enable more appropriate use of healthcare ser-vices [6], and potentially lower healthcare costs [7,8]. However, EHR adoption has been slow. Researchers have reported on issues related to EHR sharing, in-cluding concerns on privacy and secu-rity, consumer empowerment, compe-tition among providers, and content standards. This study attempts to ana-lyze prior research and to synthesize comprehensive, empirically-based con-ceptual models of EHR for personal use. Personal use of EHR is an impor-tant first step in creating effective and measurable interventions to personal health maintenance. In e-commerce terms, there are two basic exchange
models for EHR information, namely “B2B-Business to Business” and “B2C-Business to Customers”. “B2B” repre-sents the exchange between two healthcare providers for the purpose of continuity of care. “B2C” refers to the sharing of EHR to the patients them-selves. From there, patients may review their own EHR, consult with people they trust or take this “portable” EHR to the next provider. We can denote this behavior of taking patients’ own EHR to the next provider as “C2B”. By con-necting “B2C” and “C2B”, the whole process can be described as “B2C2B”. Since the last part “2B” is optional, we use “B2C(2B)” to represent this new model of EHR sharing and exchange. We can also call it “Patient-Initiated Exchange” (PIX) because the exchange process is mostly evoked and controlled by the patients.
2. Methods
We review papers and case-studies for those EHR systems used nation-wide, or those designed for nation-wide use. This study does not include demonstra-tions or feasibility studies done at a small scale. The literature we reviewed is mainly in English, so it is possible that we may overlook literature published in other languages.
3. Models for Personal Use
of EHR
There are many different ways to fa-cilitate personal use of EHR. Based on
IMIA Yearbook of Medical Informatics 2009 41 Electronic Health Record Goes Personal World-wide
Inexpensive data media model Internet patient portal model Personal portable device model Media Flash memory, CD-ROM, Smart
Card, etc. None PDA, cell phone, smart phone and Ultra Mobile PC (UMPC) Advantages 1. Low media cost
2.Small in size and highly portable;
3.Good privacy
1. Easy access
2. No physical media 1. Better privacy than the Internet portal model 2. Easy to update
3. Personal reminders possible Disadvantages 1. Can not be viewed without
additional viewer and viewing device
2. Not ease to update 3. Easy to be misplaced
1. Need Internet connection 2. Need a reliable and trusted
back-end health information service provider 3. Privacy and security issues
abound
1. Bulkier
2. More expensive to own and maintain
Examples MERIT-9 project (Japan); TMT project (Taiwan); Smart Card (Taiwan, Germany, Malaysia)
Electronic Patient Folder (Germany); MyHealthOnLine (UK); Danish National Health Portal (Denmark)
TET / TrEHRT (APAMI, AMIA, EFMI, IMIA)
different information sharing mecha-nisms, we summarized them into three models. The Inexpensive data media model, the Internet patient portal model and the Personal portable de-vice model. Each model has its own strengths and weaknesses with differ-ent ways of addressing privacy and security concerns (Table 1).
3.1 Inexpensive Data Media Model
Using flash memory (such as USB sticks), CD-ROM and Smart Card as the media for sharing EHR with pa-tients is an affordable and accessible solution for most users. Major examples are: (1) The MERIT-9 project [9] from Japan that uses a CD-ROM as a
trans-mission medium of medical images and medical summaries to patients who ap-ply for them. DICOM images on a CD-ROM compliant to the DICOMDIR stan-dard are also commonly supported by major PACS (Picture Archiving and Com-munication Systems) vendors in Japan as well as other countries. (2) Taiwan’s TMT (Taiwan Electronic medical record Template) project [10, 11] uses USB sticks as the primary media for hospitals to share non-imaging EHR information with their patients. (3) In addition, a small amount of more secure informa-tion-sharing can be achieved by Smart Card as a medium. Notable examples can be found in Taiwan, Germany and Ma-laysia. Taiwan’s Health Smart Card car-ried by its 23 million population store diagnoses, medications, allergy and vac-cination information among other insur-ance-related data. (4) German national health IT body (Gematik) [12] is also issuing a patient Smart Card for core medical data and considering using a USB stick to store the rest of EHR data. (5) Malaysia MyKAD is a government multipurpose Smart Card that also will support some personal medical data [13]. The advantages of this model are: (1) low media cost (2) small in size and highly portable (3) better privacy because they are carried personally. However, information stored on the portable me-dia cannot be viewed without additional equipment. The user will need a com-puter, a viewer application and, when using Smart Cards, a card reader. The information is not easy to update and, if there are many different viewers for the same type of data, as in the DICOMDIR CD-ROM case, the users can get confused and become reluctant to use them because they are unable to familiarize themselves with so many different viewers. A patient may also misplace the portable media, caus-ing concerns on privacy breach.
3.2 Internet Patient Portal Model
An intuitive way to provide personal use of EHR is through an Internet pa-tient portal. Using the Internet to
pro-Fig. 1 The Patient-Initiated Exchange (PIX) model for EHR sharing and exchange through patients
Li et al. 42
IMIA Yearbook of Medical Informatics 2009
vide information storage and user-in-terface, a patient will be able to access personal health information with a web browser. Electronic Patient Folder in Germany plans to offer a longitudinal, person-related medical history by us-ing their health card as a key to iden-tify, authenticate and authorize access. In the UK, patients will be able to ac-cess a summary of their own health and care information, known as the Sum-mary Care Record (SCR), via portal services such as MyHealthOnLine [14]. Denmark uses a “Danish National Health Portal” to provide EHR infor-mation access for patients and health-care professionals [15]. Prominent ex-amples from the industry on patient portal would include Google’s “Google Health” and Microsoft’s “Health Vault”. Although both projects have larger plans in the future, they do provide functional web-based patient portals for depositing health information and for “importing” EHR information from participating healthcare providers.
This model offers fast updating and easy access to the users. Compared to the “Inexpensive data media” model, this model frees the users from carrying a physical medium and therefore eliminates the risk of misplacing it. On the other hand, a user must be able to access the Internet and a reliable/ trusted back-end health information service provider (gov-ernments or non-profit organizations are preferred). The individual’s privacy and security issues will have to be addressed properly by the health information ser-vice providers before this model can be accepted by the general public.
3.3 Personal Portable Device Model
Popular personal portable devices such as PDAs, cell phones, smart phones and Ultra Mobile PCs (UMPCs) allow im-mediate access to personal health in-formation either stored locally in the device, or remotely in a server, (which can be readily downloadable through a live connection). Combined with intel-ligent applications, this model can
pro-vide powerful personal reminders for a patient. Common examples include medication reminders and alerts (such as drug-drug interactions), health checkup and life-style reminders. An international collaborative project - TET / TrEHRT (Traveler’s EHR Template) is a practical example of this model [11,16]. Based on the open Android operating system from Google, they developed a JAVA-based viewer for a summarized patient record designed for travelers. This viewer, which runs on Google phones, offers two modes of storage for the personal health data: off-line and online. In the off-line mode, the data are stored locally in the memory of the phone and can be exported to an XML file compatible to the CCR (Con-tinuity of Care Record) standard devel-oped by ASTM in the US [17]. In the online mode, the data are stored remotely in a server and can be downloaded through a secure Internet connection. This model provides better privacy than the Internet portal model and is easier to update than the Inexpensive data media model. Unlike the Internet portal model, a personal portable device can operate even without a network connec-tion (when data are stored in the device). However, such devices are bulkier than most flash memory gadgets and more ex-pensive to own and maintain.
3.4 Security and Privacy
Security and privacy are among the high-est priority issues when health informa-tion sharing are considered. During the whole sharing process, we must ensure the integrity and non-repudiation of the shared information. A public key infra-structure (PKI) is generally considered crucial to achieve a safe environment for health information sharing. Some coun-tries use dedicated PKI for health infor-mation processing to retain better secu-rity and privacy. An increasing number of examples can be found around the world including the Health Certificate Authority (HCA) Card in Taiwan, the Health Card (eGK) in Germany, the UZI-card [18] in the Netherlands.
4. Discussion
The patients are open to the use of EHR, but they have concerns about privacy and security [19]. They want their pri-vacy to be respected, and the systems to be safe from the intrusion of outsid-ers. The model of “B2C(2B)” exchange is potentially a solution for it, because this model shifts control of personal health information back to the patient her/himself and thus resolved the data ownership problem and also alleviated the patients’ concern on how the data will be used among healthcare providers. However, important steps must be taken before this model can be fully realized: (1) An environment that guarantees the integrity and non-repudiation of the health information exchange or shar-ing is required. As described above, PKI is a popular and feasible solu-tion today. However, the cost of building a nation-wide PKI can be formidable and would require long-term planning and maintenance. (2) In order to exchange data between
providers and to share consistently with the patients, a common con-tent standard has to be available. For example, Taiwan’s electronic Medical record Template (TMT) is being implemented in major hos-pitals in Taiwan as a common con-tent standard. With TMT, healthcare providers are able to provide to their patients a set of standardized digi-tally-signed XML files that contain a patient’s EHR information. More than 2,000 patients have received their own EHR which they can browse with a free viewer. The CCR is also a potential content standard for a summary of patient data. (3) Support from the healthcare
or-ganizations is essential for the B2C(2B) model to be successful. A precise mapping process and a data-mapping gateway are required ini-tial investment from the provider side in order to transform the standard patient file from their internal data structure. This would also involve a set of standard vocabularies among
IMIA Yearbook of Medical Informatics 2009 43 Electronic Health Record Goes Personal World-wide
the providers, in addition to the for-mat of the contents shared.
5. Conclusion
Personal use of EHR under the B2C(2B) model does look promising based on our study. We started to observe a trend that governments around the world are embarking on related projects. With multiple stake-holders involved, we are only beginning to understand the com-plexity of such undertakings.
It can be difficult for the patients to really read and understand their own healthcare data. Managing the data us-ing computers and Internet tools poses another challenge, especially for the elderly, who happen to generate more data about their health and healthcare. The sharing of EHR with the patients may also trigger cautions for some phy-sicians. There are physicians who be-lieve that “too much” information can fuel malpractice suits. On the other hand, some believe that personal use of EHR may actually alleviate the problem because physicians will be more willing to discuss with the pa-tients when they know that the infor-mation will eventually be shared, and that better-informed patients file less complaints [10].
Important factors that influence a provider to adopt the “B2C(2B)” model are quality and competition. On the quality side, this model allows a closer look of the medical record by the pa-tients. It may give patients more con-f idence on the quality ocon-f care or in-spire doubt if the information is incom-plete and/or inaccurate. Competition among the providers can also determine the speed and scope of adoption. Com-peting hospitals may want to belay the sharing of the patient records to prevent losing their patients to competitors. On the other hand, they cannot afford not to do it if their competitors have already started to share the EHR with the pa-tients since the inaction can be inter-preted as having something to hide.
An array of opportunities will be opened to the industry when most pa-tients carry their own personal EHR. For example, a “health record bank” as proposed by Ball et al. can be a start-ing point for more “value-added” ser-vices provided by the enterprise [20, 21]. The B2C(2B) model can also help clinical research by offering more sec-ondary use of patient data. Hypotheti-cally speaking, the data could be col-lected through a virtual “Facebook for Clinical Trial” on popular Internet so-cial network. It may attract people with the same health problems to gather and share their personal EHR with the clini-cal trials that they trust.
Although the possibilities seem end-less, it will take some time for all the stake-holders to understand and em-brace this new model. It is going to be a long but worthy journey towards prevalent personal use of EHR. With all the new incentives from major coun-tries around the world to facilitate Health Information Technology adop-tion, we believe that the day that we “liberate” health information back to the hands of the people is near.
Acknowledgement
This research is partially supported by the Na-tional Science Council grant NSC 97-3114-E-010-001 and the Department of Health, Executive Yuan, Taiwan.
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Correspondence to: Yu-Chuan (Jack) Li
Graduate Institute of Biomedical Informatics Taipei Medical University
250 Wu-Xin Street Taipei, Taiwan 110
Tel: +886 2 2736 1661 ext 2069 Fax: +886 2 2378 7795 E-mail: jack@tmu.edu.tw
