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ON the USE of Openehr in a PORTABLE PHR ON THE USE OF openEHR IN A PORTABLE PHR Cândido Santos1,2, Tiago Pedrosa1,3, Carlos Costa1 and José Luís Oliveira1 1DETI/IEETA, Universidade de Aveiro, Aveiro, Portugal 2DEE, Instituto Superior de Engenharia de Coimbra (ISEC), Coimbra, Portugal 3IPB, Instituto Politécnico de Bragança, Bragança, Portugal Keywords: Personal health record, Electronic health record, openEHR, Privacy, Security. Abstract: Quality medical acts rely on patient medical information. With paper records, the responsibility of gathering the disparate information and making it available to the caregivers, falls exclusively upon the patient. This still is, to great extent, the case with electronic health documents. The consensus is that the advantages of patient involvement in his own health are numerous. With the advent of recent technologies and their deployment in healthcare, new ways of involving the patient and making him an active part of his own health are possible. Electronic Health Records (EHR) and specially Personal Health Records (PHR) are important tools for patient empowerment but data population and management through non-intuitive structured forms is time consuming, takes a great amount of effort, and can be deterring specially for people that are not very computer-oriented. PHRs can be simple and scalable applications that the patient uses to get started and afterwards evolve towards complexity. In any case, compliance with standards must be accomplished. In this paper we present a PHR simple to use, implemented on a USB Flash pen for mobility, and compliant with the openEHR specification. Our model builds on openEHR and adds security and privacy features, allows patient data management and can work as an information repository. 1 INTRODUCTION exist and not be available to the professional caregiver, or it can be available but take too much Healthcare is currently undergoing profound time to browse through. changes. New diagnose and treatment techniques It is common sense that involving patients in make possible to address more conditions thus their own healthcare is positive. The more involved increasing personal life quality but also the number and informed a patient is, the more useful and severity of illnesses per patient. People pay an information he will supply and more informed increasing attention to their own health, demanding medical decisions will be made by healthcare for quality healthcare. Population ageing leads to an professionals. increase in the number and seriousness of medical Information technologies bring new possibilities conditions per patient, and to continuous and to PHI management through the use of computerized integrated healthcare. medical records that can assume many forms. The All the aforementioned factors result in an deployment of Electronic Health Records (EHR) in increase in the number of medical acts, their general replaces with advantages the paper-based improved quality, the rise in health costs, and the records. Personal Health Records (PHR) are an exponential escalation of the amount of existing important factor contributing for patient information per patient. Of special interest to us is empowerment. the latter. Patient management of PHI through the use of a Personal Health Information (PHI) is typically PHR can be daunting, specially for people not very generated in many different places making its familiar with computers. Meticulous, regular and collection and management difficult for the patient. timely data input by the patient is undoubtedly With great amounts of PHI to process, existence clinically relevant and helpful. But most doesn’t necessarily mean availability and availability implementations force the use of complex and user- doesn’t necessarily mean usability. Information can unfriendly screen forms. Thus, instead of acting as 351 Santos C., Pedrosa T., Costa C. and Luís Oliveira J. (2011). ON THE USE OF openEHR IN A PORTABLE PHR . In Proceedings of the International Conference on Health Informatics, pages 351-356 DOI: 10.5220/0003173203510356 Copyright c SciTePress HEALTHINF 2011 - International Conference on Health Informatics positive factors in involving the patient in his own devices and accessed locally or remotely via smart health, these implementations can easily deter an cards, as proposed by Costa (2003) and Costa (2004) individual away from technology, accomplishing and other portable devices like USB pens. exactly the opposite objective they were designed for. 2.1 Patient Empowerment We share the vision that PHRs are an important factor in positive patient involvement in his own Anderson and Funnel (2009) argue that patient health, and ultimately in total patient empowerment. empowerment in healthcare can be conceived as the But we take a simplistic approach and propose that capacity of patients to think critically and make complicated computerized PHI management autonomous decisions. In order to achieve this, the schemes can be more prejudicial than beneficial. patient must have access to a comprehensive set of Instead, a minimal PHR, conformant with current his own PHI and be capable of managing that data in standards, and easy to use can serve as an entry point the way he sees fit. To achieve this goal, the control specially for users that are not too computer-skilled. of the medical information has to fall under the full If, later on, those users decide they want extra responsibility of the patient, i.e. the patient must features in their PHR, more complex have physical possession of all the data pertaining to implementations are available. his health. In this paper we review the current situation When considering PHI management through the concerning patient’s medical records and advocate use of information technologies, different levels of steps towards patient empowerment through PHRs. computer knowledge have to be considered since Considering that a) A great percentage of data some people are not technology-oriented. A scalable that is accessible to patients consists of solution adaptable to different user technology Complementary Diagnose Tests (CDT), mostly in awareness is a major advantage. paper format; b) When converted into electronic format, this data will also be responsible for the 2.2 EHRs and PHRs greatest demands in terms of storage and management needs; c) The open source standard PHI management is achieved through EHRs and specification openEHR allows integration with PHRs but various problems presently afflict this legacy systems (assumed to be professionally technological field, in particular the lack of data managed); a simple system for the patient to perform representation and data transfer standards widely that integration and PHI management at a personal accepted, the non-agreement on the basic data fields level is worthy of attention. that make up an EHR/PHR, the varying definitions Most PHR proposals state that it must be patient- of EHRs and PHRs, and legal issues concerning data centric, but that usually just means that the health ownership. information revolves around the patient. We propose There are no generally accepted definitions for a PHR that is patient-centric in information terms, EHRs and PHRs but most of the literature seems to and that is also user-centric in terms of easiness. agree at least on one basic difference between them: an EHR contains PHI and is usually stored and managed by a healthcare institution for the use of 2 BACKGROUND healthcare professionals, while a PHR consists of a set of PHI (that might be the same or different from One way of making the patient a more active the data set contained in the EHR) that is usually participant in the healthcare services he seeks stored under the patient’s ownership and throughout his lifetime is by allowing him to management, and for his own use. responsibly manage his own PHI. Population ageing Of special concern to us is the concept of PHR. is changing some paradigms in healthcare, making it According to Tang et al (2006) a PHR is more than a more patient-centric and increasingly relying on the simple means to gather all the scattered information, patients’ responsible actions in the management of it encompasses a set of data, knowledge and their own conditions like diabetes, for example. applications that allow the patient to become With the objective of giving the patient some actively involved in his health by providing a set of form of access to his health information, some PHI functionalities. Kaelber et al (2008) have presented a management schemes have been proposed, namely general description of most of the work that remains through the use of EHRs and PHRs operated on to be done in the field of PHRs. servers, personal computers and mass storage 352 ON THE USE OF openEHR IN A PORTABLE PHR One of the problems that face developers is the Some countries are shifting from traditional right choice of model to work with. Given the paper-based national identification cards and present interest surrounding this theme, it’s only passports towards smart cards. This evolution natural that various classifications arise. For towards a technological overlap between example, Kaelber and Pan (2008) classified PHRs identification, health information access, and according to their degree of interconnectivity as a) management makes possible to envision many forms Stand-alone; b) Tethered. The later being subdivided of integration. in provider-tethered, payer-tethered, third-party- The storage capacity of smart cards is on the tethered and interoperable. constant rise but more so is the amount of medical The stand-alone model has the advantage of information generated per patient that can nowadays being non-biased in terms of the focus it presents take some gigabytes of storage space, and this is an towards parts of the data contained in the PHR but important limitation at the moment. For all their the disadvantage of having to be bought, while the security features, SC’s are undoubtedly a type of tethered models tend to be offered as fidelity factor device to keep under close observation in search of or, at least, to be less expensive.
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