Controlling my genome with my smartphone: first clinical experiences of the PROMISE system.

BACKGROUND: The development of Precision Medicine strategies requires high-dimensional phenotypic and genomic data, both of which are highly privacy-sensitive data types. Conventional data management systems lack the capabilities to sufficiently handle the expected large quantities of such sensitive data in a secure manner. PROMISE is a genetic data management concept that implements a highly secure platform for data exchange while preserving patient interests, privacy, and autonomy. METHODS: The concept of PROMISE to democratize genetic data was developed by an interdisciplinary team. It integrates a sophisticated cryptographic concept that allows only the patient to grant selective access to defined parts of his genetic information with single DNA base-pair resolution cryptography. The PROMISE system was developed for research purposes to evaluate the concept in a pilot study with nineteen cardiomyopathy patients undergoing genotyping, questionnaires, and longitudinal follow-up. RESULTS: The safety of genetic data was very important to 79%, and patients generally regarded the data as highly sensitive. More than half the patients reported that their attitude towards the handling of genetic data has changed after using the PROMISE app for 4 months (median). The patients reported higher confidence in data security and willingness to share their data with commercial third parties, including pharmaceutical companies (increase from 5 to 32%). CONCLUSION: PROMISE democratizes genomic data by a transparent, secure, and patient-centric approach. This clinical pilot study evaluating a genetic data infrastructure is unique and shows that patient's acceptance of data sharing can be increased by patient-centric decision-making.

A Federated Online Search Tool for Biospecimens (Sample Locator): Usability Study.

BACKGROUND: The German Biobank Alliance (GBA) aims to establish a cross-site biobank network. For this endeavor, the so-called Sample Locator, a federated search tool for biospecimens and related data, has been developed, forming the heart of its information technology (IT) infrastructure. OBJECTIVE: To ensure the sustainable use of such a tool, we included researchers as participants in an end user-based usability evaluation. METHODS: To develop a prototype ready for evaluation, we needed input from GBA IT experts. Thus, we conducted a 2-day workshop with 8 GBA IT team members. The focus was on the respective steps of a user-centered design process. With the acquired knowledge, the participants designed low-fidelity mock-ups. The main ideas of these mock-ups were discussed, extracted, and summarized into a comprehensive prototype using Microsoft PowerPoint. Furthermore, we created a questionnaire concerning the usability of the prototype, including the System Usability Scale (SUS), questions on negative and positive aspects, and typical tasks to be fulfilled with the tool. Subsequently, the prototype was pretested on the basis of this questionnaire with researchers who have a biobank background. Based on this preliminary work, the usability analysis was ultimately carried out with researchers and the results were evaluated. RESULTS: Altogether, 27 researchers familiar with sample requests evaluated the prototype. The analysis of the feedback certified a good usability, given that the Sample Locator prototype was seen as intuitive and user-friendly by 74% (20/27) of the participants. The total SUS score by the 25 persons that completed the questionnaire was 80.4, indicating good system usability. Still, the evaluation provided useful advice on optimization potential (eg, offering a help function). CONCLUSIONS: The findings of this usability analysis indicate that the considerations regarding a user-friendly application that have been made in the development process so far strongly coincide with the perception of the study participants. Nevertheless, it was important to engage prospective end users to ensure that the previous development is going in the desired direction and that the Sample Locator will be used in the future. The user comments and suggestions for improvement will be considered in upcoming iterations for refinement.

The Patient as Genomic Data Manager - Evaluation of the PROMISE App.

PROMISE (Personal Medical Safe) was a German research project which aimed to provide the responsibility of genomic data to the patient via a mobile app. The patient should accept or decline study requests to use his/her genomic data via the app. In the evaluation of the app the experiences with mobile health as well as the opinion on being the genomic data manager were measured. Furthermore, the test patients were asked about their opinion and their concerns on the PROMISE app. Most of the 19 test patients were aware of the high sensibility of genomic data and thought that the PROMISE app was a suitable solution. The largest part found it good that they were the responsible data owner. However, several participants also found it important to have a permanent contact person when it comes to questions on inquiries or the app.

Mapping the Entire Record-An Alternative Approach to Data Access from Medical Logic Modules.

OBJECTIVES: This study aimed to describe an alternative approach for accessing electronic medical records (EMRs) from clinical decision support (CDS) functions based on Arden Syntax Medical Logic Modules, which can be paraphrased as "map the entire record." METHODS: Based on an experimental Arden Syntax processor, we implemented a method to transform patient data from a commercial patient data management system (PDMS) to tree-structured documents termed CDS EMRs. They are encoded in a specific XML format that can be directly transformed to Arden Syntax data types by a mapper natively integrated into the processor. The internal structure of a CDS EMR reflects the tabbed view of an EMR in the graphical user interface of the PDMS. RESULTS: The study resulted in an architecture that provides CDS EMRs in the form of a network service. The approach enables uniform data access from all Medical Logic Modules and requires no mapping parameters except a case number. Measurements within a CDS EMR can be addressed with straightforward path expressions. The approach is in routine use at a German university hospital for more than 2 years. CONCLUSION: This practical approach facilitates the use of CDS functions in the clinical routine at our local hospital. It is transferrable to standard-compliant Arden Syntax processors with moderate effort. Its comprehensibility can also facilitate teaching and development. Moreover, it may lower the entry barrier for the application of the Arden Syntax standard and could therefore promote its dissemination.

eHealth literacy research-Quo vadis?

The concept of electronic health (eHealth) literacy evolved from the social and information sciences and describes competencies necessary to use electronic health services. As it is a rather new topic, and as there is no current overview of the state of the art in research, it is not possible to identify research gaps. Therefore, the objective of this viewpoint article is to increase knowledge on the current state of the art of research in eHealth literacy and to identify gaps in scientific research which should be focused on by the research community in the future. The article provides a current viewpoint of the concept of eHealth literacy and related research. Gaps can be found in terms of a missing "gold standard" regarding both the definition and the measurement of eHealth literacy. Furthermore, there is a need for identifying the implications on eHealth developers, which evolve from the measurement of eHealth literacy in eHealth users. Finally, a stronger inclusion of health professionals, both in the evolving concept and in the measurement of eHealth literacy, is needed in the future.

eHealth literacy, Internet and eHealth service usage: a survey among cancer patients and their relatives.

PURPOSE: The aim of our study was to investigate Internet and eHealth usage, with respect to eHealth literacy, by cancer patients and their relatives. PATIENTS AND METHODS: Using a standardized questionnaire we asked patients who attended lectures on complementary medicine in 2016. RESULTS: We received 142 questionnaires. The frequency of general Internet usage was directly associated with younger age and better Internet connection. Younger participants were not only more confident in allocating health-related Internet information into reliable or unreliable facts, but also more confident and capable of gaining medical knowledge through eHealth services. A regular use of eHealth services facilitated the decision-making process. Reading ability was associated with a better understanding regarding eHealth offers. CONCLUSION: In a modern health care system, emphasis should be on skills contributing to eHealth literacy among patients to improve their ability to profit from eHealth offers and improve health care.

Acceptance by laypersons and medical professionals of the personalized eHealth platform, eHealthMonitor.

INTRODUCTION AND BACKGROUND: Often, eHealth services are not accepted because of factors such as eHealth literacy or trust. Within this study, eHealthMonitor was evaluated in three European countries (Germany, Greece, and Poland) by medical professionals and laypersons with respect to numerous acceptance factors. METHODS: Questionnaires were created on the basis of factors from literature and with the help of scales which have already been validated. A qualitative survey was conducted in Germany, Poland, and Greece. RESULTS: The eHealth literacy of all participants was medium/high. Laypersons mostly agreed that they could easily become skillful with eHealthMonitor and that other people thought that they should use eHealthMonitor. Amongst medical professionals, a large number were afraid that eHealthMonitor could violate their privacy or the privacy of their patients. Overall, the participants thought that eHealthMonitor was a good concept and that they would use it. DISCUSSION AND CONCLUSION: The main hindrances to the use of eHealthMonitor were found in trust issues including data privacy. In the future, more research on the linkage of all measured factors is needed, for example, to address the question of whether highly educated people tend to mistrust eHealth information more than people with lower levels of education.

Consumer Health Informatics in the Context of Engaged Citizens and eHealth Services - A New CHI Meta Model.

Consumer Health Informatics (CHI) is a relatively new and interdisciplinary field in Medical Informatics. It focuses on consumer- rather than professional-centered services. However, the definitions and understanding of a) what is a "consumer"? or b) what is health technology in the context of CHI? and c) what factors and actors influence the usage of eHealth services? vary widely. The CHI special interest group (SIG) - associated with the German Association for Medical Informatics, Biometry and Epidemiology - conducted two workshops in 2015 to improve the common understanding on these topics. The workshop outcomes, the derived CHI-specific meta model and examples how to apply this model are presented in this paper. The model supports the definition of multi-actor contexts, as it not solely reflects the conventional patient-physician relationship but also allows for the description of second health market providers.

Usefulness of a Tailored eHealth Service for Informal Caregivers and Professionals in the Dementia Treatment and Care Setting: The eHealthMonitor Dementia Portal.

BACKGROUND: The European eHealthMonitor project (eHM) developed a user-sensitive and interactive Web portal for the dementia care setting called the eHM Dementia Portal (eHM-DP). It aims to provide targeted support for informal caregivers of persons with dementia and professionals. OBJECTIVE: The objective of this study was to assess the usefulness and impact of the eHM-DP service in the dementia care setting from two user perspectives: informal caregivers and professionals. METHODS: The evaluation study was conducted from June to September 2014 and followed a before-after, user-participatory, mixed-method design with questionnaires and interviews. The used intervention was the eHM-DP: an interactive Web portal for informal caregivers and professionals that was tested for a 12-week period. Primary outcomes for caregivers included empowerment, quality of life, caregiver burden, decision aid, as well as perceived usefulness and benefits of the eHM-DP. Primary outcomes for professionals involved decision aid, perceived usefulness, and benefits of the eHM-DP. RESULTS: A total of 25 informal caregivers and 6 professionals used the eHM-DP over the 12-week study period. Both professionals and informal caregivers indicated perceived benefits and support by the eHM-DP. In total, 65% (16/25) of informal caregivers would use the eHM-DP if they had access to it. Major perceived benefits were individualized information acquisition, improved interaction between informal caregivers and professionals, access to support from home, and empowerment in health-related decisions (PrepDM Score: 67.9). Professionals highlighted the improved treatment and care over the disease course (83%, 5/6) and improved health care access for people living in rural areas (67%, 4/6). However, there was no improvement in caregiver burden (Burden Scale for Family Caregivers) and quality of life (EuroQol-5D-5L) over the study period. CONCLUSIONS: Our study provides insight into the different user perspectives on an eHealth support service in the dementia treatment and care setting. These results are of importance for future developments and the uptake of eHealth solutions in the dementia domain and reinforce the importance of early user involvement. Turning to the primary target of the eHM-DP service, our findings suggest that the eHM-DP service proved to be a valuable post-diagnostic support service, in particular for the home-based care setting. Further research on a larger scale is needed to enhance the implementation in existing health care infrastructures.

Tailored e-Health services for the dementia care setting: a pilot study of 'eHealthMonitor'.

BACKGROUND: The European eHealthMonitor project (eHM) developed a user-sensitive and interactive web portal for dementia care: the eHM Dementia Portal (eHM-DP). It aims to provide targeted and personalized support for informal caregivers of people with dementia in a home-based care setting. The objective of the pilot study was to obtain feedback on the eHM-DP from two user perspectives (caregivers and medical professionals), focusing on caregiver empowerment, decision aid, and the perceived benefits of the eHM-DP. METHODS: The study on the eHM-DP was conducted from March 2014 to June 2014. The methodological approach followed a user-participatory design with a total number of 42 participants. The study included caregivers of people with dementia and medical professionals (MPs) from the metropolitan region of Erlangen-Nürnberg (Bavaria, Germany). Study participants were interviewed face-to-face with semi-structured, written interviews. RESULTS: Caregivers indicated a high degree of perceived support by the eHM-DP and of provided decision aid. In total, 89 % of caregivers and 54 % of MPs would use the eHM-DP if access were provided. The primary benefits participants perceived were the acquisition of individualized information, computerized interaction between caregivers and MPs, empowerment in health-related decisions and comprehensive insights into the progress of the disease. Major recommendations for improving the eHM-DP encompassed: an active search functionality based on predefined terms, the implementation of a chatroom for caregivers, an upload function and alerts for MPs, as well as the overall design. CONCLUSIONS: Our study is the first to have provided new insights and results on an interactive and needs-oriented web portal, endeavouring towards empowerment and assistance in decision making for caregivers as well as MPs within the realm of caring for patients with dementia. The acceptance and willingness to use the eHM-DP emphasizes the potential of eHealth services for community-based dementia care settings.

A scoping review of cloud computing in healthcare.

BACKGROUND: Cloud 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. METHODS: MEDLINE 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. RESULTS: 102 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. CONCLUSIONS: Even 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.

Key factors for a successful implementation of personalized e-health services.

Personalized e-health services hold many promises, e.g. the improvement of health care quality or the reduction of costs. However, such services can't tap their full potential if they will not be used. That's why it is essential to understand what brings potential users to accept them. In the literature many acceptance models exist that predict the usage of innovations, but none of them specifically refers to the adoption of e-health services. Therefore we combined the Unified Theory of Acceptance and Use of Technology (UTAUT) and the e-health literacy concept and enhanced the resulting model with additional factors. MEDLINE® was searched; 75 studies were included for final analysis. Apart from the UTAUT variables and e-health literacy, 10 additional factors were identified: anxiety, trust, attitude toward using, computer self-efficacy, perceived system quality, search strategy, user's condition, health specific knowledge, Internet dependency and satisfaction with medical care. Future research will include the devolvement of an instrument for assessing these factors and testing the initial research model in an international context.