ObjectiveThe study’s objective was to assess factors contributing to the use of smart devices by general practitioners (GPs) and patients in the health domain, while specifically addressing the situation in Germany, and to determine whether, and if so, how both groups differ in their perceptions of these technologies.MethodsGPs and patients of resident practices in the Hannover region, Germany, were surveyed between April and June 2014. A total of 412 GPs in this region were invited by email to participate via an electronic survey, with 50 GPs actually doing so (response rate 12.1%). For surveying the patients, eight regional resident practices were visited by study personnel (once each). Every second patient arriving there (inclusion criteria: of age, fluent in German) was asked to take part (paper-based questionnaire). One hundred and seventy patients participated; 15 patients who did not give consent were excluded.ResultsThe majority of the participating patients (68.2%, 116/170) and GPs (76%, 38/50) owned mobile devices. Of the patients, 49.9% (57/116) already made health-related use of mobile devices; 95% (36/38) of the participating GPs used them in a professional context. For patients, age (P < 0.001) and education (P < 0.001) were significant factors, but not gender (P > 0.99). For doctors, neither age (P = 0.73), professional experience (P > 0.99) nor gender (P = 0.19) influenced usage rates. For patients, the primary use case was obtaining health (service)-related information. For GPs, interprofessional communication and retrieving information were in the foreground. There was little app-related interaction between both groups.ConclusionsGPs and patients use smart mobile devices to serve their specific interests. However, the full potentials of mobile technologies for health purposes are not yet being taken advantage of. Doctors as well as other care providers and the patients should work together on exploring and realising the potential benefits of the technology.

BackgroundThe European Union considers diseases to be rare when they affect less than 5 in 10,000 people. It is estimated that there are between 5000 and 8000 different rare diseases. Consistent with this diversity, the quality of information available on the Web varies considerably. Thus, quality criteria for websites about rare diseases are needed.ObjectiveThe objective of this study was to generate a catalog of quality criteria suitable for rare diseases.MethodsFirst, relevant certificates and quality recommendations for health information websites were identified through a comprehensive Web search. Second, all considered quality criteria of each certification program and catalog were examined, extracted into an overview table, and analyzed by thematic content. Finally, an interdisciplinary expert group verified the relevant quality criteria.ResultsWe identified 9 quality certificates and criteria catalogs for health information websites with 304 single criteria items. Through this, we aggregated 163 various quality criteria, each assigned to one of the following categories: thematic, technical, service, content, and legal. Finally, a consensus about 13 quality criteria for websites offering medical information on rare diseases was determined. Of these categories, 4 (data protection concept, imprint, creation and updating date, and possibility to contact the website provider) were identified as being the most important for publishing medical information about rare diseases.ConclusionsThe large number of different quality criteria appearing within a relatively small number of criteria catalogs shows that the opinion of what is important in the quality of health information differs. In addition, to define useful quality criteria for websites about rare diseases, which are an essential source of information for many patients, a trade-off is necessary between the high standard of quality criteria for health information websites in general and the limited provision of information about some rare diseases. Finally, transparently presented quality assessments can help people to find reliable information and to assess its quality.

Background: Finding reliable information on one of more than 7000 rare diseases is a major challenge for those affected. Since rare diseases are defined only by the prevalence criterion, a multitude of heterogeneous diseases are included. Common to all, however, are difficulties regarding information access. Even though various quantitative studies have analyzed the use of different information sources for specific rare diseases, little is known about the use of information sources for different rare diseases, how users rate these information sources based on their experiences, and how the use and importance of these information sources change over time. Methods: Fifty-five patients with a variety of rare diseases and 13 close relatives participated in qualitative interviews. For these interviews, a semi-structured guideline was developed, piloted, and revised. Data analysis involved a qualitative content analysis developed by Philipp Mayring. Results: The participants considered internet as the most important and widespread information source, especially for early information. Although patients have difficulty dealing with information obtained online, they consider online searching a quick and practical option to gather information. During the course of the disease, personal contact partners, especially self-help associations and specialized doctors, become more important. This is also because information provided online is sometimes insufficiently detailed to answer their information needs, which can be complemented by information from doctors and self-help.

BackgroundRare diseases are, by definition, very serious and chronic diseases with a high negative impact on quality of life. Approximately 350 million people worldwide live with rare diseases. The resulting high disease burden triggers health information search, but helpful, high-quality, and up-to-date information is often hard to find. Therefore, the improvement of health information provision has been integrated in many national plans for rare diseases, discussing the telephone as one access option. In this context, this study examines the need for a telephone service offering information for people affected by rare diseases, their relatives, and physicians.MethodsIn total, 107 individuals participated in a qualitative interview study conducted in Germany. Sixty-eight individuals suffering from a rare disease or related to somebody with rare diseases and 39 health care professionals took part. Individual interviews were conducted using a standardized semi-structured questionnaire. Interviews were analysed using the qualitative content analysis, triangulating patients, relatives, and health care professionals. The fulfilment of qualitative data processing standards has been controlled for.ResultsOut of 68 patients and relatives and 39 physicians, 52 and 18, respectively, advocated for the establishment of a rare diseases telephone service. Interviewees expected a helpline to include expert staffing, personal contact, good availability, low technical barriers, medical and psychosocial topics of counselling, guidance in reducing information chaos, and referrals. Health care professionals highlighted the importance of medical topics of counselling—in particular, differential diagnostics—and referrals.ConclusionsTherefore, the need for a national rare diseases helpline was confirmed in this study. Due to limited financial resources, existing offers should be adapted in a stepwise procedure in accordance with the identified attributes.

No abstract