Hans-Ulrich Prokosch

eHealth Trends in Europe 2005-2007: A Population-Based Survey

Background In the last decade, the number of Internet users worldwide has dramatically increased. People are using the Internet for various health-related purposes. It is important to monitor such use as it may have an impact on the individual’s health and behavior, patient-practitioner roles, and on general health care provision. Objectives This study investigates trends and patterns of European health-related Internet use over a period of 18 months. The main study objective was to estimate the change in the proportion of the population using the Internet for health purposes, and the importance of the Internet as a source of health information compared to more traditional sources. Methods The survey data were collected through computer-assisted telephone interviews. A representative sample (N = 14,956) from seven European countries has been used: Denmark, Germany, Greece, Latvia, Norway, Poland, and Portugal. The European eHealth Consumer Trends Survey was first conducted in October-November 2005 and repeated in April-May 2007. In addition to providing background information, respondents were asked to rate the importance of various sources of health information. They were also queried as to the frequency of different online activities related to health and illness and the effects of such use on their disposition. Results The percentage of the population that has used the Internet for health purposes increased from an estimated 42.3% (95% CI [Confidence Interval] 41.3 - 43.3) in 2005 to an estimated 52.2% (95% CI 51.3 - 53.2) in 2007. Significant growth in the use of the Internet for health purposes was found in all the seven countries. Young women are the most active Internet health users. The importance of the Internet as a source of health information has increased. In 2007, the Internet was perceived as an important source of health information by an estimated 46.8% (95% CI 45.7 - 47.9) of the population, a significant increase of 6.5 % (95% CI 4.9 - 8.1) from 2005. The importance of all the traditional health information channels has either decreased or remained the same. An estimated 22.7% (95% CI 21.7 - 23.6) are using it for more interactive services than just reading health information. Conclusion The Internet is increasingly being used as a source of health information by the European population, and its perceived importance is rising. Use of the Internet for health purposes is growing in all age groups and for both men and women, with especially strong growth among young women. We see that experienced Internet health users are also using the Internet as an active communication channel, both for reaching health professionals and for communicating with peers.

Empowerment of patients and communication with health care professionals through an electronic health record

OBJECTIVE The aim of this project was to design and develop a personal electronic health record (EHR) in order to support patient empowerment and additionally to enhance their communication and information exchange with health professionals through this EHR. METHOD The functionality of a personal Electronic Healthcare Record (EHR) may vary from a simple web-based interface for interactive data entry and data review up to a much more powerful system additionally supporting electronic data/document communication between clinical information systems of primary care practitioners or hospitals and even reminder based support for the empowered citizen, to actively take care of his health, based on relevant disease management programs. It is one means to support patient empowerment, additionally supported by tools for building a patient community. Since storage and communication of data in an EHR comprises sensible personal health data, each of those functions needs specific security and access management requirements to be considered and implemented. RESULT Clinical pilot projects are already done or under development.

Strategic information management plans: the basis for systematic information management in hospitals

Information management in hospitals is a complex task. In order to reduce complexity, we distinguish strategic, tactical, and operational information management. This is essential, because each of these information management levels views hospital information systems from different perspectives, and therefore uses other methods and tools. Since all these management activities deal only in part with computers, but mainly with human beings and their social behavior, we define a hospital information system as a sociotechnical subsystem of a hospital. Without proper strategic planning it would be a matter of chance, if a hospital information system would fulfil the information strategies goals. In order to support strategic planning and to reduce efforts for creating strategic plans, we propose a practicable structure.

The German Chronic Kidney Disease (GCKD) study: design and methods

BACKGROUND Chronic kidney disease (CKD) is increasingly recognized as a global health problem. The conditions leading to CKD, the health impact of CKD and the prognosis differ markedly between affected individuals. In particular, renal failure and cardiovascular mortality are competing risks for CKD patients. Opportunities for targeted intervention are very limited so far and require an improved understanding of the natural course of CKD, of the risk factors associated with various clinical end points and co-morbidities as well as of the underlying pathogenic mechanisms. METHODS The German Chronic Kidney Disease (GCKD) study is a prospective observational national cohort study. It aims to enrol a total of 5000 patients with CKD of various aetiologies, who are under nephrological care, and to follow them for up to 10 years. At the time of enrolment, male and female patients have an estimated glomerular filtration rate (eGFR) of 30-60 mL/min×1.73 m2 or overt proteinuria in the presence of an eGFR>60 mL/min×1.73 m2. Standardized collection of biomaterials, including DNA, serum, plasma and urine will allow identification and validation of biomarkers associated with CKD, CKD progression and related complications using hypothesis-driven and hypothesis-free approaches. Patient recruitment and follow-up is organized through a network of academic nephrology centres collaborating with practising nephrologists throughout the country. CONCLUSIONS The GCKD study will establish one of the largest cohorts to date of CKD patients not requiring renal replacement therapy. Similarities in its design with other observational CKD studies, including cohorts that have already been established in the USA and Japan, will allow comparative and joint analyses to identify important ethnic and geographic differences and to enhance opportunities for identification of relevant risk factors and markers.

Evaluation of data completeness in the electronic health record for the purpose of patient recruitment into clinical trials: a retrospective analysis of element presence

BackgroundComputerized clinical trial recruitment support is one promising field for the application of routine care data for clinical research. The primary task here is to compare the eligibility criteria defined in trial protocols with patient data contained in the electronic health record (EHR). To avoid the implementation of different patient definitions in multi-site trials, all participating research sites should use similar patient data from the EHR. Knowledge of the EHR data elements which are commonly available from most EHRs is required to be able to define a common set of criteria. The objective of this research is to determine for five tertiary care providers the extent of available data compared with the eligibility criteria of randomly selected clinical trials.MethodsEach participating study site selected three clinical trials at random. All eligibility criteria sentences were broken up into independent patient characteristics, which were then assigned to one of the 27 semantic categories for eligibility criteria developed by Luo et al. We report on the fraction of patient characteristics with corresponding structured data elements in the EHR and on the fraction of patients with available data for these elements. The completeness of EHR data for the purpose of patient recruitment is calculated for each semantic group.Results351 eligibility criteria from 15 clinical trials contained 706 patient characteristics. In average, 55% of these characteristics could be documented in the EHR. Clinical data was available for 64% of all patients, if corresponding data elements were available. The total completeness of EHR data for recruitment purposes is 35%. The best performing semantic groups were ‘age’ (89%), ‘gender’ (89%), ‘addictive behaviour’ (74%), ‘disease, symptom and sign’ (64%) and ‘organ or tissue status’ (61%). No data was available for 6 semantic groups.ConclusionsThere exists a significant gap in structure and content between data documented during patient care and data required for patient eligibility assessment. Nevertheless, EHR data on age and gender of the patient, as well as selected information on his disease can be complete enough to allow for an effective support of the manual screening process with an intelligent preselection of patients and patient data.

Routine data from hospital information systems can support patient recruitment for clinical studies.

Background Delayed patient recruitment is a common problem in clinical studies. Hospital information systems (HIS) contain data items relevant for inclusion or exclusion criteria of these studies. Purpose We developed and assessed a system to support patient recruitment using HIS data. Methods We developed a workflow integrated in our HIS to notify study physicians about potential trial subjects. Automatic HIS database queries based on inclusion and exclusion criteria for each clinical study are performed regularly and generate e-mail notifications via a communication server. Study physicians can verify eligibility with a specific HIS study module. The system performance was assessed with a survey addressing utility, usability, stability, change in recruitment rate, and estimated time savings. Results During 10 months of operation, 1328 notifications were generated and 329 enrollments (25%) were documented for seven studies. Precision of alerts depends on availability of appropriate HIS items. Utility and usability were assessed as good, and stability as excellent. Users reported an increased patient recruitment rate for three studies. Three studies reported an estimated time saving of 10 min per recruited patient. The main perceived benefit was systematic identification of potentially eligible patients without time-consuming patient screening procedures in the different parts of the hospital. Limitations Notifications about potentially eligible patients depend on HIS data quality regarding inclusion/exclusion criteria, in particular, completeness, timeliness, and validity. Conclusions Routine HIS data can support patient recruitment for clinical studies by means of an automated notification workflow and efficient access to clinical data. Clinical Trials 2010; 7: 183-189. http://ctj.sagepub.com

A scoping review of cloud computing in healthcare

BackgroundCloud computing is a recent and fast growing area of development in healthcare. Ubiquitous, on-demand access to virtually endless resources in combination with a pay-per-use model allow for new ways of developing, delivering and using services. Cloud computing is often used in an “OMICS-context”, e.g. for computing in genomics, proteomics and molecular medicine, while other field of application still seem to be underrepresented. Thus, the objective of this scoping review was to identify the current state and hot topics in research on cloud computing in healthcare beyond this traditional domain.MethodsMEDLINE was searched in July 2013 and in December 2014 for publications containing the terms “cloud computing” and “cloud-based”. Each journal and conference article was categorized and summarized independently by two researchers who consolidated their findings.Results102 publications have been analyzed and 6 main topics have been found: telemedicine/teleconsultation, medical imaging, public health and patient self-management, hospital management and information systems, therapy, and secondary use of data. Commonly used features are broad network access for sharing and accessing data and rapid elasticity to dynamically adapt to computing demands. Eight articles favor the pay-for-use characteristics of cloud-based services avoiding upfront investments. Nevertheless, while 22 articles present very general potentials of cloud computing in the medical domain and 66 articles describe conceptual or prototypic projects, only 14 articles report from successful implementations. Further, in many articles cloud computing is seen as an analogy to internet-/web-based data sharing and the characteristics of the particular cloud computing approach are unfortunately not really illustrated.ConclusionsEven though cloud computing in healthcare is of growing interest only few successful implementations yet exist and many papers just use the term “cloud” synonymously for “using virtual machines” or “web-based” with no described benefit of the cloud paradigm. The biggest threat to the adoption in the healthcare domain is caused by involving external cloud partners: many issues of data safety and security are still to be solved. Until then, cloud computing is favored more for singular, individual features such as elasticity, pay-per-use and broad network access, rather than as cloud paradigm on its own.

Use and perception of Internet for health related purposes in Germany: results of a national survey

SummaryObjectives:Patient empowerment through the Internet is seen as a chance to improve patient-physician communication. Studies on the prevalence of Internet use for health related purposes and on how patients perceive those technologies are still rare. We therefore studied perception of and trends in health related Internet use.Methods:As part of a European survey 1.000 German individuals were interviewed using a computer-based telephone interview (CATI: Gabler-Häder-Design, random-digit-dialing, last birthday method) in October 2005. Descriptive statistics and logistic regression models were applied for elaborating characteristics of the health Internet users.Results:Internet use in general (72.3%) and for health related purposes (53.1%) is already quite high. Its importance, relative to other sources of health related information, was rated rather low. Younger citizens and people with paid work used the Internet more often for health related purposes, nevertheless, assessing it as less important for health related purposes than their counterparts.Conclusion:Despite booming of Internet use in Germany, consumers still value and use more the traditional sources of health information/communication with their doctors. Followup studies with a subsequent survey in 2007 will be pursued.

Disease burden and risk profile in referred patients with moderate chronic kidney disease: composition of the German Chronic Kidney Disease (GCKD) cohort

BACKGROUND A main challenge for targeting chronic kidney disease (CKD) is the heterogeneity of its causes, co-morbidities and outcomes. Patients under nephrological care represent an important reference population, but knowledge about their characteristics is limited. METHODS We enrolled 5217 carefully phenotyped patients with moderate CKD [estimated glomerular filtration rate (eGFR) 30-60 mL/min per 1.73 m(2) or overt proteinuria at higher eGFR] under routine care of nephrologists into the German Chronic Kidney Disease (GCKD) study, thereby establishing the currently worldwide largest CKD cohort. RESULTS The cohort has 60% men, a mean age (±SD) of 60 ± 12 years, a mean eGFR of 47 ± 17 mL/min per 1.73 m(2) and a median (IQR) urinary albumin/creatinine ratio of 51 (9-392) mg/g. Assessment of causes of CKD revealed a high degree of uncertainty, with the leading cause unknown in 20% and frequent suspicion of multifactorial pathogenesis. Thirty-five per cent of patients had diabetes, but only 15% were considered to have diabetic nephropathy. Cardiovascular disease prevalence was high (32%, excluding hypertension); prevalent risk factors included smoking (59% current or former smokers) and obesity (43% with BMI >30). Despite widespread use of anti-hypertensive medication, only 52% of the cohort had an office blood pressure <140/90 mmHg. Family histories for cardiovascular events (39%) and renal disease (28%) suggest familial aggregation. CONCLUSIONS Patients with moderate CKD under specialist care have a high disease burden. Improved diagnostic accuracy, rigorous management of risk factors and unravelling of the genetic predisposition may represent strategies for improving prognosis.

Unlocking Data for Clinical Research - The German i2b2 Experience

OBJECTIVE Data from clinical care is increasingly being used for research purposes. The i2b2 platform has been introduced in some US research communities as a tool for data integration and querying by clinical users. The purpose of this project was to assess the applicability of i2b2 in Germany regarding use cases, functionality and integration with privacy enhancing tools. METHODS A set of four research usage scenarios was chosen, including the transformation and import of ontology and fact data from existing clinical data collections into i2b2 v1.4 instances. Query performance was measured in comparison to native SQL queries. A setup and administration tool for i2b2 was developed. An extraction tool for CDISC ODM data was programmed. Interfaces for the TMF privacy enhancing tools (PID Generator, Pseudonymization Service) were implemented. RESULTS Data could be imported in all tested scenarios from various source systems, including the generation of i2b2 ontology definitions. The integration of TMF privacy enhancing tools was possible without modification of the platform. Limitations were found regarding query performance in comparison to native SQL and certain temporal queries. CONCLUSIONS i2b2 is a viable platform for data query tasks in use cases typical for networked medical research in Germany. The integration of privacy enhancing tools facilitates the use of i2b2 within established data protection concepts. Entry barriers should be lowered by providing tools for simplified setup and import of medical standard formats like CDISC ODM.