Ebook: Medical and Care Compunetics 4

This book accompanies the fourth annual ICMCC Event.

In the past 12 months the role of ICMCC with regards to patient-related ICT has become obvious with the start of the Record Access Portal. It is our goal to come forward with a recommendation to the WHO on Record Access. This recommendation will therefore be one of the leading issues of the Round Table on the Responsibility Shift from Doctor to Patient.

The 2007 ICMCC Event deals with the following subjects:

• EHR and Record Access;

• Digital Homecare;

• Behavioral compunetics;

• The Paradigm Change Challenge towards Personal Health.

This last session has been organized by Prof. Dr. Bernd Blobel from the eHealth Competence Center (University of Regensburg Medical Center, Germany) jointly with the European Federation for Medical Informatics (EFMI) Working Groups “Electronic Health Records (EHR)” and “Security, Safety and Ethics (SSE)”.

Due to personal circumstances this book has really been a group effort and I therefore would like to thank by name all members of the scientific board: Bernd Blobel, Denis Carroll, Brian Fisher, Richard Fitton, Chris Flim, Hermie Hermens, Peter Pharow, Denis Protti, Laura Roa and Kanagasingam Yogesan.

On behalf of the ICMCC Foundation board I wish to thank the STC, PAERS, IFMBE and the WABT-ICET-UNESCO for their support to make this conference possible.

Finally I would like to thank all the authors who have contributed to making the fourth ICMCC Event into an interesting and challenging conference.

Lodewijk Bos, Event chair

This article deals with the role of compunetics in the future of patient-related ICT. Information supply, knowledge centers, gathering of personal and secondary data, the role of patient and professional networks, e-learning are the topics covered here.

On June 14, 2006 three reports were published by the Institute of Medicine (IOM) in regards to “THE FUTURE OF EMERGENCY CARE IN THE UNITED STATES HEALTH SYSTEM”. The three combined reports: Hospital-Based Emergency Care at the Breaking Point, Emergency Medical Services at the Crossroads and Emergency Care for Children Growing Pains, are a clear reflection of the state we currently face, even without a major disaster. Some key findings drawn from all three reports showed that the emergency care system is ill-prepared to handle a major one. For example, many of the 41 million citizens who do not have medical insurance end up using the Emergency Departments (ED) as their source of “regular” care and many of these EDs are at or over capacity, there is little surge capacity for a major event, whether it takes the form of a natural disaster, disease outbreak, or terrorist attack. If we had during the major disaster event, a “contagion” element, i.e. pandemic flu, then the problem would be even more complicated, since the “regular” hospital patient population would need to be isolated from these patients. If we add to this equation the length of time involved in the “current” process of vaccine creation and production (i.e. the volume of vaccines that would be required to be provided to the citizens of the world), the scenario does not look to promising. A new model is needed then to address these requirements. In the developed world we have a number of devices (e.g., radio, TV, Computers, telephones, mobile devices, etc.) and infrastructure (e.g., cable, wireless networks, etc.) that are already supplying the homes and the individuals with a large number of independent applications and different types of information. These stovepipes or independently developed family that include: tele-banking, Telehealth, tele-education, e-commerce, entertainment on demand, etc. when “connected” as an integrated set, may provide an ideal environment, where families may stay at home for a long period of time (quarantine) and would have all the mechanisms in place for getting food and water from supermarkets, drugs from the pharmacy, the children would be able to go to school from home (in turn their school grounds may become temporary hospitals), adults could telecommute to work and minor conditions could be consulted and treated through these systems (with the help of a Telehealth platform that would include electronic health records), etc.

The impact of technological advancement and the widespread availability of resources and their utilization, to meet the health care requirements of the community, an important fundamental need of the human being. After food and shelter is discussed. Some of the most sought criteria relating to the technology selection and the practice management are devised and proposed for their implementation to achieve quality health, particularly in the rural areas. An insight into the government policies, programs and as a result, the impact on the ultimate goal of achieving the desired health care, mainly during the last two decades is covered here. A model of health care for remote areas is proposed here to assist in the improvement of the conditions of better health care and better quality of life of the human being.

Croatian national primary healthcare ICT Implementation strategy is determined by Croatian national health strategy and plan, Croatian ICT development strategy for 21st century, and requirements specifications for the heath information system. National primary healthcare ICT implementation strategy components are accented: purpose of the ICT implementation strategy, information principles, need and ICT enablement in domains of patients, healthcare professionals, policy-makers and managers and public. Based on the determinants, three organizational levels have been established – government, ministerial and project levels. General architecture of Croatian primary healthcare information system and its implementation as well as national ICT environmental accelerations for national primary healthcare ICT environmental accelerators for health ICT implementations are presented.

This document demonstrates how we use open source software in building an Internet healthcare community around an emerging Personal Health Record standard called Continuity of Care Record (CCR) format, and how members of the community can share healthcare information securely and efficiently while retaining total privacy.

The Electronic Medical Record (EMR) is a very important support tool for patients and healthcare professionals but it has some barriers that prevent its successful integration within the healthcare practice. These barriers comprise not only security concerns but also costs, in terms of time and effort, as well as relational and educational issues that can hinder its proper use. Access control is an essential part of the EMR and provides for its confidentiality by checking if a user has the necessary rights to access the resources he/she requested. This paper comprehensively reviews the published material about access control in healthcare. The review reveals that most of the access control systems that are published in the literature are just studies or prototypes in which healthcare professionals and patients did not participate in the definition of the access control policies, models or mechanisms. Healthcare professionals usually needed to change their workflow patterns and adapt their tasks and processes in order to use the systems. If access control could be improved according to the users' needs and be properly adapted to their workflow patterns we hypothesise that some of the barriers to the effective use of EMR could be reduced. Then EMR could be more successfully integrated into the healthcare practice and provide for better patient treatment.

The wider use of healthcare information systems and the easier integration and sharing of patient clinical information can facilitate a wider access to medical records. The main goal of this paper is to perform a systematic review to analyze published work that studied the impact of facilitating patients' access to their medical record. Moreover, this review includes the analysis of the potential benefits and drawbacks on patient attitudes, doctor-patient relationship and on medical practice. In order to fill a gap in terms of the electronic medical record (EMR) impact within this issue, this review will focus on the use of EMR for patients to access their medical records as well as the advantages and disadvantages that this can bring. The articles included in the study were identified using MEDLINE and Scopus databases and revised according to their title and abstract and, afterwards, their full text was read considering inclusion and exclusion criteria. From the 165 articles obtained in MEDLINE a total of 12 articles were selected. From Scopus, 2 articles were obtained, so a total of 14 articles were included in the review. The studies revealed that patients' access to medical records can be beneficial for both patients and doctors, since it enhances communication between them whilst helping patients to better understand their health condition. The drawbacks (for instance causing confusion and anxiety to patients) seem to be minimal. However, patients continue to show concerns about confidentiality and understanding what is written in their records. The studies showed that the use of EMR can bring several advantages in terms of security solutions as well as improving the correctness and completeness of the patient records.

With their ever-growing importance and usability, the healthcare sector has been investing heavily in medical information systems in recent years, as part of the effort to improve medical decision-making and increase its efficiency through improved medical processes, reduced costs, integration of patients' data, etc. In light of these developments, this research aims to evaluate the contribution of information technology (IT) to improving the medical decision-making processes at the point of care of internal medicine and surgical departments and to evaluate the degree to which IT investments are worthwhile.

This has been done by assessing the value of information to decision-makers (physicians) at the point of care by investigating whether the information systems improved the medical outcomes. The research included three steps (after a pilot study) – the assessment of the subjective value of information, the assessment of the realistic value of information, and the assessment of the normative value of information, the results of each step being used as the starting assumptions for the following steps. Following a discussion and integration of the results from the various steps, the results of the three assessment stages were summarized in a cost-effectiveness analysis and an overall return on investment (ROI) analysis. In addition, we tried to suggest IT strategies for decision-makers in the healthcare sector on the advisability of implementing such systems as well as the implications for managing them.

This research is uniquely pioneering in the manner in which it combines an assessment of the three kinds of measures of value of information in the healthcare environment. Our aim in performing it was to contribute to researchers (by providing additional insight into the fields of decision theory, value of information and medical informatics, amongst others), practitioners (by promoting efficiency in the design of new medical IS and improving existing IS), physicians (by enhancing the efficient use of information resources), patients (by improving healthcare services) and policy decision-makers in the healthcare sector (regarding the advisability of investments in such systems and suggestions for managing them).

The paper describes a research–development which had the objective to implement and manage the Electronic Patient Record in a multifunctional pilot platform named PROMED. The Electronic Patient Record implemented by PROMED platform is mainly aimed to facilitate both patient and health providers access to the health records and to provide an optimization of diagnostic and decision in healthcare services based on patients' medical history and medical statistics. The project promotes modern information and communication technologies for increasing quality and efficiency of healthcare services in an information based society. The PROMED platform is expected to contribute specifically to the improvement of the healthcare services in Romania by offering a solution for the integration of the main stakeholders involved in national healthcare system: patients, health service providers and public health authorities. The pilot system is first implemented in the “Cuza Voda” Obstetrics and Gynecology Hospital in Iassy, an important universitary and cultural city in the North East of Romania.

The relationship between doctors and patients is changing as patients live longer but with a greater incidence of chronic disease. An increase in the availability of information about health coupled with the Choice agenda and a patient-led NHS has encouraged patients to learn more about their own health. Patient access to their own GP-held records has led to the development of a Partnership of Trust whereby patients and their clinicians develop a shared understanding of their health and what each do for each other. This could potentially lead to significant patient and clinician benefits ultimately leading to better outcomes for individuals and societies.

This paper analyses different benefits of the full integration of components for clinical guideline management in the information system architecture of a healthcare organization. Subsequently, we propose a methodology for the development of these components based on the European prEN12967 standard, in order to facilitate this integration. Benefits are studied from several viewpoints. First, from the healthcare professional user viewpoint, as a powerful decision support tool, by which the Electronic Health Record of a specific patient could suggest the appropriate guidelines to apply and a particular assistance plan for him or her. We are centered in co-morbidity patients because these tasks are especially difficult to accomplish in this kind of patients. Second, from the guideline creation viewpoint, we analyze how the tacit knowledge implicit in the healthcare information system could be the base for the explicit representation of knowledge in a guideline and the posterior validation of these guidelines. Our approach is in agreement with today's new paradigm for evidence-based medicine demanded by healthcare professionals. The proposed method for guideline management components development is compliant with CEN's prEN12967 European standard, and consequently follows ITU-T's ODP methodology.

Radio-frequency Identification (RFID) offers a potentially flexible and low cost method of locating objects and tracking people within buildings. RFID systems generally require less infrastructure to be installed than other solutions but have their own limitations. As part of an assisted living system, RFID tools may be useful to locate lost objects, support blind and partially sighted people with daily living activities and assist in the rehabilitation of adults with acquired brain injury. This paper outlines the requirements and the role of RFID in assisting people in these three areas. The development of a prototype RFID home support tool is described and some of the issues and challenges raised are discussed. The system is designed to support assisted living for elderly and infirm people in a simple, usable and extensible way in particular for supporting the finding and identification of commonly used and lost objects such as spectacles. This approach can also be used to extend the tagged domain to commonly visited areas, and provide support for the analysis of common activities, and rehabilitation.

Each patient is supplied with a smart-card containing a Radio Frequency IDentification (RFID) chip storing a unique identification code. The patient places the Smart-card on a pill-dispenser unit containing an RFID reader. The RFID chip is read and the code sent to a Base-station via a wireless Bluetooth link. A database containing both patient details and treatment information is queried at the Base-station using the RFID as the search key. The patient's treatment data (i.e., drug names, quantities, time, etc.) are retrieved and sent back to the pill-dispenser unit via Bluetooth. Appropriate quantities of the required medications are automatically dispensed, unless the patient has already taken his/her daily dose. Safe, confidential communication and operation is ensured.

Despite first written references to permanent developmental stuttering occurred more than 2500 years ago, the mechanisms underlying this disorder are still unknown. This paper briefly reviews stuttering causal hypothesis and treatments, and presents the requirements that a new stuttering therapeutic device should verify. As a result of the analysis, an adaptive altered auditory feedback device based on a multimodal intelligent monitor, within the framework of a knowledge-based telehealthcare system, is presented. The subsequent discussion, based partly on the successful outcomes of a similar intelligent monitor, suggests that this novel device is feasible and could help to fill the gap between research and clinic.

Innovation is essential to improve accessibility, effectivity and efficiency of healthcare delivery. eHealth promises these improvements provided that it complies to essential requirements with respect to quality and patient safety. eHealth must be implemented thoughtfully to yield full benefit to the patient. However, there exists no structured framework of essential requirements to guide development, implementation and usage. The scope of application of eHealth is wide and new technology is introduced continuously. So, the framework of essential requirements must evolve as well to support and encourage innovation. The author proposes a process for continuous verification and validation of eHealth throughout development, implementation and use and a method to continuously update the framework of essential requirements.

Dementia is a progressive, chronic disease affecting 5% of all persons above 65 and over 40% of people over 90. The aim of the COGKNOW project is to achieve a breakthrough with research that addresses the needs of those with dementia, particularly those with mild dementia living in the community. This entails cognitive reinforcement in four main areas: helping people to remember, helping to maintain social contact, helping with performing daily life and recreational activities and finally enhance feelings of safety. Based on a sound foundation of needs reported in dementia literature, workshops and individual interviews have been carried out with dementia sufferers and their carers in three European countries. A ranked analysis of information from workshops and interviews, and the state of the art of successful ICT solutions will be the basis for formulating the functionalities of the technical solution and for the development of a cognitive prosthetic device with associated services for people with mild dementia. The research and evaluation will be conducted from human factors, technology, and business perspectives in three phases of one year each. In this paper we discuss the design of the COGKNOW project, the first results of the user needs inquiry workshops and the ICT solutions the COGKNOW project will focus on in the first year.

The use of communication technologies may overcome some of the difficulties of conventional, paper-based, self-management of chronic diseases. This paper aims to describe and evaluate the use of P'ASMA – a web based asthma self-management support tool regarding the opinion of patients and their adherence to monitoring in comparison to standard paper-based tools. System description: P'ASMA allows the collection of asthma monitoring data and provides, to both patient and doctor, immediate feedback about patient's condition. For each patient a set of forms and scheduling options can be chosen. Evaluation methods: Twenty-one adults with previous medical diagnosis of asthma were included in an exploratory randomized crossover study. Patients used P'ASMA or a paper asthma diary and action-plan each during 4 weeks in a random sequence. Results: The number of patients who wrote negative remarks regarding P'ASMA was 2 and regarding paper-tools was 11; positive comments were 6 and 1 respectively for P'ASMA and Paper-based. Twelve patients were very interested to continue to monitor their asthma using P'ASMA whereas only 2 with Paper-based (p=0.002). Of the 19 problems reported with P'ASMA, 9 were related to the Internet connection, 5 to the user interface, 3 to internal system errors and 2 to the questions interpretation. The completeness of paper diary records was better; however, 10 patients reported filling it several days at once which was not allowed in P'ASMA. Conclusions: The intervention was feasible, safe and the problems detected in the web-application can be corrected. With P'ASMA data quality improved as the integrity features increase the reliability of the data. Moreover, patients preferred the web-based application to monitor their asthma.

The objective of this paper is to outline the project that eventually seeks to visualize clinical knowledge found within the record; the immediate task being to create a model that can be deployed for therapeutic purposes. How therapies for a certain type of chronically ill patient can benefit from Virtual Reality (VR) tools is investigated. Ankylosing Spondylitis (AS) is selected as a test condition. VR is expected to provide a novel treatment environment for AS sufferers, in which they can relax, manage their pain and take part in the routine exercise more effectively and efficiently by using the VR tools. An integral part of this model's construction will be to elicit evaluative detail from the literature and the patients' perspective. The purpose is to understand the inevitable challenges facing this proposed intervention if the design prototype is to successfully move from the research domain and become an integral part of established therapeutic practice.

For the patient, ICT is a resource that helps the individual to cope with illness. On the basis of in depth interviews with diabetic patients, their desired coping strategies that relate to communication and information were identified. The strategies fall into the following categories: Contact with fellow-patients, Care (choice of care, control of care and control of information) and social environment. Patient empowerment by ICT means that ICT enables the patient to cope with illness. A number of ICT-tools currently available for patients were analyzed on the aspect of patient empowerment. Findings are that most tools provide little support for patients' coping behaviour in choice (of treatment and caregiver), control of care and control of information (by the patient).

This lack of effective instrumental support for a patient's coping and empowerment is not explained by technical restraints, but by the dominance on the supply side in healthcare. To meet the neglected needs of patients, caregivers would have to adapt the organisation of their work. Examples of success in applying ICT/Telemedicine are given. The structural impediments for patient empowerment must be further clarified and removed or minimised.

Adrenocortical Carcinoma is a rare malignant tumor that forms in the outer layer of tissue of the adrenal gland, which is a small gland situated on the anteriosuperior aspect of the kidneys. These glands produce steroid hormones, adrenaline, and noradrenaline that control heart rate, blood pressure, and other body functions.

Because this cancer affects a limited number of patients, it is referred to as an Orphan disease, which is defined as a condition that affects fewer than 200,000 people nationwide. Internationally, there are 5,000 – 8,000 such diseases affecting an estimated 55 million people. There is often limited medical intervention for many of these conditions.

With a small number of patients, and a correspondingly small number of providers and researches, this disease is a candidate for establishing a sharable information system that is used by the patient, provider, and researcher. This resource empowers the patient to support their care and treatment while allowing medical providers and researches to have valuable and broad access to patient activities and behaviors that may impact their treatment.

Orphan disease registries are prime candidates for establishing health information resources that support communications between patients, providers, and researchers. As a resource, this information can be used to facilitate treatment protocols to include biomarker identification, testing and monitoring of new drugs. By empowering a common community of individuals that share a common disease, the potential to accelerate research and identify improved treatment options may also increase.

This paper presents a strategic plan and design for implementing Orphan disease registries within an e-health environment that specifically links patients and providers with researchers. The Adrenocortical Carcinoma Registry will be used to demonstrate the implementation and potential of these systems.