Background: In the early 2000s, electronic surveillance systems began to be developed to collect and transmit data on infectious diseases in low-income countries (LICs) in real-time using mobile technologies. Such surveillance systems, however, are still very rare in Africa. Among the non-infectious epidemics to be surveilled are road traffic injuries, which constitute major health events and are the fifth leading cause of mortality in Africa. This situation also prevails in Burkina Faso, whose capital city, Ouagadougou, is much afflicted by this burden. There is no surveillance system, but there have been occasional surveys, and media reports of fatal crashes are numerous and increasing in frequency.Objective: The objective of this article is to present the methodology and implementation of, and quality of results produced by, a prototype of a road traffic crash and trauma surveillance system in the city of Ouagadougou.Methods: A surveillance system was deployed in partnership with the National Police over a six-month period, from February to July 2015, across the entire city of Ouagadougou. Data were collected by all seven units of the city’s National Police road crash intervention service. They were equipped with geotracers that geolocalized the crash sites and sent their positions by SMS (short message service) to a surveillance platform developed using the open-source tool Ushahidi. Descriptive statistical analyses and spatial analyses (kernel density) were subsequently performed on the data collected.Results: The process of data collection by police officers functioned well. Researchers were able to validate the data collection on road crashes by comparing the number of entries in the platform against the number of reports completed by the crash intervention teams. In total, 873 crash scenes were recorded over 3 months. The system was accessible on the Internet for open consultation of the map of crash sites. Crash-concentration analyses were produced that identified ‘hot spots’ in the city. Nearly 80% of crashes involved two-wheeled vehicles. Crashes were more numerous at night and during rush hours. They occurred primarily at intersections with traffic lights. With regard to health impacts, half of the injured were under the age of 29 years, and 6 persons were killed.Conclusions: This pilot study demonstrated the feasibility of developing simple surveillance systems, based on mHealth, in LICs. In the early 2000s, electronic surveillance systems began to be developed to collect and transmit data on infectious diseases in low-income countries (LICs) in real-time using mobile technologies. Information and communication technologies (ICTs) were developed that offered sophisticated computing and communications capabilities from remote settings . These ISuch surveillance systems are still very rare in Africa, especially in LICs , despiteAmong non-infectious ‘epidemics’ also requiring surveillance are road traffic injuries ,7, whichHowever, in most African LICs, it is very difficult to assess the exact number of road crashes, where they occur, and their mortality/morbidity consequences. The lack of trauma data in these countries has long been recognized and deplored ,9, but lIn Burkina Faso, the issue of road crashes and traumas has not been given priority in public health strategies, mainly due to a lack of resources and the profusion of other priorities requiring attention . Yet theBurkina Faso’s National Police tally the number of collisions on public roads from statements by officers at the scene. The National Firefighters’ Brigade (BNSP) looks after the majority (70%) of those injured in road crashes . It tracAs such, there is a need in Burkina Faso, and in other LICs, to develop tools for reporting road crashes and traumatic injuries so that evidence can be produced to better understand this phenomenon that has become a major problem. The use of mobile technologies and social media has already been shown to be effective in public health surveillance , althougThe objective of this article is to present the methodology and implementation of, and quality of results produced by, a prototype of a road traffic crash and trauma surveillance system implemented in partnership with the National Police in the city of Ouagadougou.Burkina Faso, a landlocked South-Sahelian country in West Africa, is one of the 10 least-developed countries in the world. Its capital, Ouagadougou, is a city of two million inhabitants that is undergoing rapid urbanization and major demographic, health, and social changes. Its growth has been poorly controlled and it remains a very heterogeneous urban conglomeration, combining a modern urban center with dense, unsanitary residential areas and irregular urban boundaries.The surveillance system was deployed over a six-month period, from February to July 2015, across the entire city. All seven patrol units of the public road crash intervention service of the National Police of the Centre Region collaborated with the research team.The data collection tool implemented in this study was a prototype of a road crash epidemic surveillance and spatial-temporal monitoring system developed using Ushahidi, an open-source tool that applies the crowdsourcing concept to mapping and geographic information. Ushahidi (‘witness’ in Swahili) uses SwiftRiver, a free open-source platform that allows information to be extracted very rapidly and then restored after being filtered and verified. Sources include a variety of channels such as Twitter, SMS (short message service), email, and Really Simple Syndication.http://traumatismes.africasys.com/) for consultation and data exportation  devices with a telephone chip that enables the geotracer’s position to be transmitted by SMS. Other data collection solutions would have been possible using smartphones and a dedicated data-capture application, but the National Police administration, concerned that smartphones would be lost, rejected this option. A back-end application was developed to handle the GPS devices’ SMSs and link them with the Ushahidi mapping system. This was activated by a police officer at the crash scene. Data were sent in real-time to the platform, which analyzed the SMS content and extracted the relevant information (geographic coordinates) to integrate it into the Ushahidi interface within the map. The capability to detect and remove duplicate reports of the same crash or vulnerable road user (pedestrian or cyclist) collision was also added. The platform was Internet-accessible .The platform’s data (files and databases) were synchronized automatically at 2:00 a.m. daily on another backup server (which had the same hardware specifications as the master server). With this architecture, it was possible to restore backups in case of corruption and also switch to the backup server in case of outage to minimize platform downtime.Twenty-one National Police officers were trained in the use and maintenance of the geotracer during a one-day training session. Refresher sessions were conducted during monthly visits to police stations. To ensure continual functionality of the geotracers, systems were installed so that they could be charged from the batteries of the police vehicles.The surveillance platform allowed the cases (crashes) that were geolocated and aggregated on the map to be exported to the geographic information system (GIS) and other statistical software. Spatial analyses (kernel density estimator) showed concentrations of traffic crashes in the city. Data analysis was performed using ArcGIS 10.3 for spatial analysis.The process of data collection by police officers using geotracers functioned well. Researchers were able to validate the data collection on crashes by comparing the number of entries in the platform against the number of reports completed by the crash intervention teams. The implementation protocol for the system was based on continuous communication between the research team and the National Police stations. This cooperation enabled problems, such as geotracer malfunctions or improper handling, to be resolved as soon as they arose. However, putting the seven geotracers in place and synchronizing the data collection took about a month. Supplementary configurations of SMS messages were needed, as well as refresher sessions with officers regarding equipment handling and maintenance. Other equipment-related problems appeared near the end of the six-month period. Several geotracers malfunctioned, mainly due to lack of protection from the heat of the vehicles in which they were installed.Both the methodology and the implementation of this simple surveillance system were nevertheless satisfactory and the results over a period of three months during which the process functioned perfectly illustrated the system’s knowledge-producing capacity. The SMS-based system for disseminating crash data validated the proposed process, because it could be replaced by a simple telephone equipped with geolocalization.In total, 873 crash scenes were recorded over 3 months. The system was accessible on the Internet  for openThe system could be accessed via the Internet everywhere in the city of Ouagadougou, including in 3G. While police officers did not use this function, testing by the research team showed the feasibility of accessing the surveillance system.To illustrate the system’s interoperability and quality, a map was created of the ‘hot spots’ of crashes in Ouagadougou  by exporcinéastes) roundabout (2), another convergence from the center toward the main highways of the capital. The next largest concentrations were observed at the Tampuy roundabout (3) and then at Yatenga Avenue (4), an area that is becoming increasingly densely inhabited. This densification has led to the development of activities all along the roads, related particularly to the presence of unauthorized residential districts, such as that of Bissighin (5). Two other concentrations of crashes were observed at the junction roundabout (6) and the circle (7). Again, these correspond to points of convergence and bypasses around the central districts, or to roads leading to new administrative poles, such as the Ouaga 2000 district (8).Without entering into the details of future articles that will analyze these data in greater depth, here we point out the mapping of ‘hot spots’ that highlighted several concentrations of crashes on the paved roads of the capital. Two main hot spots appeared in the city center: one at the United Nations roundabout . More than 50% of the injured were under the age of 29 years . Nearly http://faser-afrosafe.org) in May 2015 and at the workshop to present the findings of this study in November 2015 (http://www.equitesante.org/equiteburkina/axe-recherche-traumatisme/). A deliberative workshop conducted with all those involved in road safety was effective in engaging the collaboration of the community as well as non-governmental and governmental organizations in monitoring, preventing, and reducing traffic crashes in Burkina Faso. The goal now is to develop a territory-wide surveillance system that will track crashes, treatment, and follow-up of patients throughout their recovery process. It is imperative that the authorities be committed to implementing this system, because the National Police hierarchy is the key to having it accepted by officers on the ground. That commitment is not obvious in Burkina Faso, nor in other LICs, where controlling and preventing traumatic injuries is not a priority for politicians [These different data collection systems are separate elements that provide the foundations for a trauma surveillance system. They could easily be implemented with the support of everyone working on road safety in Burkina Faso. Authorities responsible for transportation, interior security, and health recently reacted positively to the results presented at the First African Road Safety Forum (FASeR)  file, could be compiled directly into the Ushahidi platform. Moreover, using smartphones would avoid the functional problems encountered with the use of geotracers. One of the positive points of this experience was the low cost of this surveillance system. The devices for sending the data, whether geotracers or smartphones, are affordable, at around 150 Euros. Also, sending SMSs is not difficult. The platform was developed using very effective open-source tools. The only costs – for development and maintenance – were incurred at the beginning of the deployment, but these were considered low in relation to the value of a good-quality system for surveillance of traffic crashes and their health consequences.These surveillance systems and their associated technologies have been shown to be effective, simple, and affordable. In a context where there is a significant paper-oriented culture, incorporating the systematic use of these tools into police surveillance practices is a challenge. National Police officers agreed to use these new tools, and we invited them to the results presentation to include them in the analysis process and to solicit their advice on the technology and how it might be adapted. One idea that emerged from this was the potential development of a data collection tool that would use a smartphone with a dedicated application, rather than a geotracer, especially because it would then be possible to enter into the form items related to the officer’s report and to the people involved. These data, theoretically compiled in the BAAC  can produce accurate counts of the numbers of crashes, deaths, and injuries.Implementing electronic surveillance systems will support public health, and these innovative tools will provide benefits not only for the health system, but also for all parties involved in the road safety sector. The overall contribution of electronic health records has been widely demonstrated globally, and their application in the South is becoming equally relevant, as shown by our experience in Ouagadougou . If thisHowever, the present study did have certain limitations. There was uncertainty about whether the data were exhaustive. In fact, the data collection carried out by the National Police matched the crashes to which they were summoned. In Burkina Faso, collision reports are prepared by the police and incur fees (3000 CFA francs = 4.6 Euros); these reports are required for insurance coverage when there are material damages. Likewise, the National Police intervene systematically whenever there are persons injured in a crash. Consequently, collisions without serious injuries are not counted, being resolved privately by the parties involved. The data collected in this study also did not take into account individuals who were injured but went to the emergency room on their own. In the study conducted by the hospital, 15% of those injured in traffic collisions  came to This pilot study demonstrated the feasibility of developing simple surveillance systems, based on mHealth, in LICs. The system’s acceptance by police officers and authorities was a major outcome of this study. While this acceptance could not be directly measured, the officers’ level of use of geotracers on public roads provided indirect evidence. Other studies have shown the suitability of mobile telephone use in the South , but nonThe principle behind any public health surveillance system is to comprehend the extent to which health problems are occurring. The basic aims are to: detect occurrences and their distribution; monitor long-term trends and causes of disease; and identify changes and developments in practices . From th


It may be concluded that children with higher food neophobia level are characterized by lower vegetable intake than children with lower food neophobia level. For fruits and juices of fruits and vegetables, associations with food neophobia level were not observed.Adhering to the recommended intake of fruits and vegetables is an important habit that should be inculcated in children, whereas food neophobia is indicated as one of the most important factors creating food preferences that may interfere. The aim of the presented study was to analyze the association between the food neophobia level and the intake of fruits and vegetables in children aged 10–12 years. The study was conducted among a group of 163 children (78 girls and 85 boys). The assessment of the food neophobia level was based on the Food Neophobia Scale (FNS) questionnaire and the assessment of the fruit and vegetable intake was based on the food frequency questionnaire. A negative correlation between the food neophobia level and the vegetable intake was observed both for girls ( Inadequate intake of fruits and vegetables is indicated as a reason for 6.7 million deaths worldwide each year, which was estimated for the year 2010 [Especially in the case of children, vegetable intake is perceived as beneficial, and consuming them in every meal is a positive behavior that may contribute to healthier dietary patterns . MoreoveIn spite of the beneficial effects of fruits and vegetables, in a study of 52 countries taking part in the World Health Survey (2002–2003), the intake was stated to be lower than the lowest recommended number of five servings per day (80 g of fruits/vegetables per serving) for 77.6% of men and 78.4% of women from all the countries [It is emphasized that even higher fruit and vegetable intake must be considered, as the World Health Organization recommends 600 g (7.5 servings) per day in adults and 480 g (6 servings) per day in children aged 5–14 years . ConsideAmong all the determinants of food choices indicated for children, only their preferences are directly dependent on them. However, children typically prefer familiar, bland, and sweet products, whereas in the case of unknown food products, aversion may occur . Food neThe aim of the presented study was to analyze the association between the food neophobia level and the intake of fruits and vegetables in children aged 10–12 years.The study was conducted according to the guidelines laid down in the Declaration of Helsinki, and all the procedures involving human subjects were approved by the Ethics Committee of the Faculty of Human Nutrition and Consumer Sciences of the Warsaw University of Life Sciences (SGGW-WULS) in Warsaw, Poland .The study group was recruited in the group of children aged 10–12 years from Warsaw, who participated in the scientific nutrition workshops for children conducted in the Dietary Outpatient Clinic of the Faculty of Human Nutrition and Consumer Sciences of the SGGW-WULS. Inclusion criteria were children aged 10–12 years, not suffering from any developmental disorder affecting intellectual abilities, including various intellectual or cognitive deficits. The information about nutritional workshops for children aged 10–12 years was placed on the web page, and 258 children were signed up for the workshops by their parents. The workshops’ participants were proposed to take part in the study for analyzing the association between food neophobia level and fruit and vegetable intake. One hundred and seventy-five children agreed to participate, and their parents or legal guardians also provided written consent to participate. The exclusion criterion was nonprovision of written consent to participate.The participants were asked to fill in two questionnaires: the Food Neophobia Scale (FNS) questionnaire by Pliner and Hobden  and the n = 163), and the same respectable level was observed for the group of boys , whereas for the group of girls, it was stated to be very good , indicating good internal consistency [The FNS questionnaire was applied in order to assess the food neophobia level in the analyzed individuals. Each individual received the list of sentences and was asked to rate his or her level of agreement with each sentence, using one of the seven categories of answer . Because the 10-item FNS questionnaire of Pliner and Hobden  includessistency .The calculated food neophobia level ranged from 10 to 70 and, on the basis of the level, the participants were divided into three tertiles characterized by various food neophobia levels: low values (first tertile) are attributed to a low neophobia level (neophilic), medium values (second tertile) are attributed to a medium neophobia level, and high values (third tertile) are attributed to a high neophobia level (neophobic) .The food frequency questionnaire was applied in order to assess the typical intake of fruits and vegetables as well as fruit and vegetable juices among the analyzed individuals. In order to reduce overestimation due to high self-appraisal, the respondents were asked not only about fruits and vegetables, and fruit and vegetable juices, but also about all the most important food products groups, without giving any information as to which items would be assessed. Potatoes were also categorized as a separate group to avoid misinterpreting them as vegetables. The applied questionnaire was previously positively validated on the basis of a Bland-Altman plot in a group of 172 children.Each individual received the list of food products groups with specified serving size and was asked about the exact number of servings  of the products specified in the questionnaire consumed per day/week/month (depending on the product), according the methodology described previously . In the The obtained data are presented as means ± standard deviation (SD) with minimum, maximum, and median values. The distributions of the analyzed factors were verified by using the Shapiro-Wilk test. Internal reliability of the FNS for the group was tested using the Cronbach’s alpha coefficient. Differences between groups were identified by using the U Mann-Whitney test and Kruskal-Wallis ANOVA test (applied for nonparametric distribution). Analyses of the correlations were verified by using Spearman’s rank correlation coefficient (applied for nonparametric distribution). p ≤ 0.05. Statistical analysis was conducted using Statistica software version 8.0 .The accepted level of significance was set at The assessment of fruit intake observed for the analyzed groups of girls and boys in various food neophobia categories is presented in p = 0.0144). At the same time, no differences in vegetable intake between girls and boys from the same neophobia level were observed. The assessment of vegetable intake observed for the analyzed groups of girls and boys in various food neophobia categories is presented in The assessment of fruit and vegetable juice intake observed for the analyzed groups of girls and boys in various food neophobia categories is presented in p = 0.032; R = −0.2432) and boys ; thus, it may be indicated that children with a higher neophobia level are characterized by lower vegetable intake than children with a lower neophobia level.To verify the differences in fruit and vegetable intake observed between girls of various food neophobia categories, analysis of correlation between the food neophobia level and the intake of fruits, vegetables, and fruit and vegetable juices was conducted . It was Considering the low fruit and vegetable intake in children, indicating the factors that may influence it as well as suggesting the possible ways to overcome the observed trend may be crucial to improve the nutritional value of diet by increasing its variety . Food neFood neophobia in children may be associated not only with pickiness, but also with unwillingness to even try unfamiliar food products, which might result in following an improperly balanced diet . BecauseIt needs to be emphasized that, in spite of the fact that in preschool children (early childhood) parents can influence dietary patterns , in the Fruit and vegetable choices in general are associated with children preferences and accessibility , which aVegetable intake is important in the context of food neophobia, as it concerns mainly fruits and vegetables . MoreoveAmong the factors influencing vegetable intake, food neophobia and pickiness have been indicated as the important ones. In the study of Galloway et al. , it was Another new insight into the area of food neophobia is associated with the fact that, in the study of Galloway et al. , only a Although the attitude toward food products may differ between boys and girls, analyzing them as one combined group may result in changing observed associations. For example, a study by Falciglia et al.  reportedAt the same time, in the study of Tsuji et al. , a high The results of the conducted study indicated that both girls and boys, aged 10–12 years, with a higher food neophobia level may be characterized by lower vegetable intake than children with a lower food neophobia level. It must also be emphasized that, in the case of girls, the association was stronger than that found in boys, as was observed in both the analysis of correlations and comparison between the groups of various food neophobia levels. Such an observation may be useful for public health purposes. In order to obtain the recommended vegetable intake in children, the reduction of the food neophobia levels may be essential. It may be achieved by taste education and food exposures, which may lead to creating new dietary habits ,45. HoweIn spite of the promising results of this study, some limitations exist. On the one hand, the general heterogeneity of the analyzed group is positive, as it represents a group representative of the Polish population of children aged 10–12 years more realistically than a homogeneous group. However, on the other hand, it may be argued that in a heterogeneous group, the observed associations may be influenced by the existing variations between individuals. Moreover, in spite of the fact that the food frequency questionnaire is one the most commonly applied methods in dietary research, this tool is also limited by specific error associated with fact that it is a retrospective method, based on the memory of respondents . HoweverSimultaneously, it must be emphasized that the varying results of the studies conducted worldwide may result from differences in the applied methodology, as well as from cultural differences between children from analyzed countries. The previously indicated differences of the most commonly chosen fruits and vegetables between Asian and European countries, as well as the indicated similarities of the most commonly chosen fruits and vegetables between European countries, are confirmed by the broad data from international comparisons. Taking into account the data from 2013, it must be indicated that fruit intake in Poland was similar to those in countries in the geographical proximity, such as Czech Republic, Slovakia, Hungary, Latvia, Ukraine, Republic of Moldavia, Romania, and the Russian Federation , and vegChildren, aged 10–12 years, with a higher food neophobia level may be characterized by lower vegetable intake than children with a lower neophobia level.The association between food neophobia level and vegetable intake in the case of girls aged 10–12 years seems to be stronger than that in the case of boys.In the case of children aged 10–12 years, in order to increase the vegetable intake, education must be conducted to achieve a reduction in the food neophobia level. However, further studies are also needed.


Introduction: An oral exam (30-60 minutes) is administered at the end of every post-graduate medical specialty program or is required to attain additional specialized qualifications. In both undergraduate and post-graduate medical education oral exams are not considered to be very objective or reliable. To improve the quality of exams in medical specialties, the Regional Medical Association for South Baden (Bezirksärztekammer Südbaden) decided in 2013 to offer a training program for head examiners and others responsible for administering exams in medical specialties.Project Description: Following a survey of examiners and examinees conducted from January through June, 2013, on the difficulty level of examination questions, satisfaction with the test, and the need for training in administering exams, the first workshop of its kind was designed. Since 2013, six workshops with a total of 93 participants have been held and evaluated.Results: The evaluations (response rate: 86%) showed a high level of acceptance for the concept behind the training. A large number of participants felt the need to define minimum standards for exams, to standardize the required level of difficulty and the assessment criteria in each subject, and to give examiners the appropriate tools needed to improve the validity and reliability of the exams.Conclusion: Offering a training program for those responsible for administering medical specialty exams appears to be both meaningful and necessary in order to meet the existing need for increased validity and reliability. In light of the initial experiences with this workshop and the differing percentages of failed exam attempts nationwide, the implementation of examiner training is to be recommended in other regions in Germany. In other European countries examiners conducting medical specialty exams undergo appropriate training before administering their first exam. In Germany oral assessments have a long tradition not only in undergraduate medical education, but also in post-graduate medical specialization. However, the validity and reliability of oral exams have been viewed as overall low, primarily because they are very susceptible to grading errors and biases. This has been demonstrated by numerous studies , 2]. In. In2]. IJefferies et al. also consider it important to explore ways to increase the quality of practical exams, above all, to implement a stronger focus on competency .To achieve a higher degree of objectivity, reliability and thus validity in an oral exam, it is necessary to structure and standardize both the test situation and the test questions , as prevCurrently in Germany there are only few examples of how to improve the medical specialty exam. For instance, in Thuringia a change was made to the exams in 2014 in response to demands made by examiners: topics and sets of questions were defined to better standardize the exam, and exam content was modernized, for example, through digital images in radiology or anchoring practical components in the exam. As a result, the 30-minute timeframe for the exam was extended to 45-90 minutes per examinee , , . AdaptatPrior to the workshop, each participant received example materials and was asked to prepare two case vignettes with exam-relevant patient cases from practice, including the grading criteria for correct answers, and to bring other exam materials such as x-ray images, ECG leads, and lung function results to the workshop. The case vignettes were first reviewed internally as part of the workshop to then be used later as exam questions during the subsequent exam simulation.The workshop has taken place six times since 2013 with a total of 93 participants coming from a wide range of medical disciplines and has been evaluated each time at the end. During this time period it has been slightly modified and adjusted for the particular number of attendees and composition of medical disciplines.A participant evaluation was administered at the end of each workshop. The evaluation survey had 12 items on the relevancy and usefulness of the workshop’s content regarding the medical specialty exam and level of satisfaction with the workshop. It was possible to include open-ended responses for the following questions:Do you have any suggestions for improving the forms and/or materials?For which aspects would you like more information and/or support?What was the most important thing you learned from this workshop?Analysis of the open-ended responses included sorting and categorizing as the first step. Then, four different raters independently assigned the responses to the pre-defined categories.Of the 449 examiners registered with the Regional Medical Association for South Baden only around 250 are active, and only ten of the 33 head examiners. Of these 260 active examiners and head examiners, 93 (36%) have taken part in the training program. Of these, 42 participants (52.5%) indicated they had more than five years of experience as an examiner, ten participants (12.5%) indicated three to five years, and 12 (15%) between one and two years. Eleven participants (13.7%) had not yet administered an exam, and five (6.3%) gave no indication of experience.The specific medical specialties of the examiners who participated in the six training programs are presented in table 2 The evaluations administered after each training session (response rate: 86.0%) showed a high level of acceptance for the training strategy, primarily the opportunity to actively participate during the workshop and the positive atmosphere among medical colleagues. In addition to the structured presentation of information and the theoretical principles underlying the need for a structured oral exam, the participants found the generation of case vignettes, the internal review of the exam questions by medical colleagues and the simulated exam especially useful (see figure 1 The most meaningful result to arise from analysis of the open-ended responses was seen in answers to the question about the most important insight from the workshop. Participants primarily found proposals to standardize and formally structure exams to be meaningful. Likewise, exchange and coordination between examiners for a specific specialty was of great importance. A verifiable and comparable structuring of the medical specialty exams, standardization of grading, prior coordination among examiners, and the creation of an internal catalogue of case vignettes for each specialty were explicitly mentioned. In addition, the examiners and head examiners had a clearer understanding of the legal and formal aspects of the medical specialty exam. Many experienced examiners felt affirmation regarding how they had previously handled exams but were still able to take away additional suggestions from the workshops for future exams.Several open-ended responses on the most important insights from the workshops are listed in figure 2 The evaluations at the end of the examiner workshop showed that the examiners see a need to develop shared minimum standards and a uniform level of requirements for each medical specialty and medical specialty exam and, above all, to give examiners new tools that enable improvements in the objectivity, reliability, and thus validity of the oral assessments , 2], , [Öchsner et. al come to a similar result in a study they conducted in Ulm, Germany, on the effects and sustainability of a training workshop aimed at the M2 exam . In thatThe simulated exam as a practical application of the workshop content, and thus a central element of the medical specialty examiner workshop, was viewed by the examiners as extremely useful for the administration of the medical specialty exam.A second evaluation of the medical specialty exams with a survey of the examiners, head examiners, and examinees is planned with a focus on answering the following questions:Were changes initiated in how the examiner conducted exams as a result of the workshop, and if so, what changes?Possible criteria for this would include the creation of a shared, subject-specific blueprint and definition of the grading criteria for passing and failing scores.Are there differences between examiners who have undergone training and those who have not when administering medical specialty exams?Possible criteria for this would be whether or not written case vignettes including previously defined grading criteria had been created, if these were used during the exam, and if the formal criteria for a good case vignette had been fulfilled.The <3% failure rate on the medical specialty exam prior to implementation of the examiner workshop has shown no substantial change in the past three years, so that it must be investigated if this criteria can be drawn upon as a quality marker for a changed testing culture.If the published failure rates for exams leading to additional qualifications in medical disciplines and specialties given by the different medical associations across Germany are considered, then it is possible to see that these rates vary significantly. Not all of the state medical associations provide these numbers annually or in a transparent manner, and the published failure rates range widely, for instance, from 3.5% in Hamburg  to 6.4% The strengths of this project lie in the fact that the training program for medical specialty examiners is the first of its kind in Germany, and thus acts as a role model. For example, the representatives of the Regional Medical Association for South Baden have not only contemplated qualitative improvements to the medical specialty exams earlier than other medical associations, but have also decided to offer and implement appropriate training for examiners and head examiners. In addition, a successful workshop design was developed, one that has been very positively received by the participants.One of the challenges faced by this project was that the workshop participants came from a wide variety of medical specialties so that it was not always possible to bring at least four examiners from a single specialty (see table 2 One further limitation is found in that up until now no outcome could be assessed in respect to the training. This is being considered in follow-up investigations.Training programs for examiners administering medical specialty exams and other assessments leading to additional post-licensure medical qualifications appear to be both valuable and necessary despite, or perhaps precisely because of, the low failure rates. Since failure rates for these exams vary widely across Germany, aiming for examiner qualification would be worth considering, not just in South Baden, but also in other regions, as this is already standard in other European countries. For improvement of quality across the board, it seems important to develop and implement a uniform concept for all of Germany.Regardless, the establishment of other assessment procedures for post-licensure medical specialization should also be considered in Germany. Relying only on knowledge-based tests is not sufficient to assess and document the competencies required of medical specialists. It is much more critical to assess how medical expertise is applied in the practical setting . ExampleThese new assessment formats could replace the current 30-60 minute-long oral examination in front of two specialist physicians and a head examiner. However, any changes to the assessment format will be accompanied by an increase in costs, as is expressly mentioned by Flum et. al in 2015 [Dr. med. Irmgard Streitlein-Böhme, Dr. med. Götz Fabry and Dr. med. Klaus Böhme received financial compensation from the Regional Medical Association for South Baden to develop and conduct the examiner workshops.The authors declare that they have no competing interests.


Professional development is essential in the health disciplines. Knowing the cost and value of educational approaches informs decisions and choices about learning and teaching practices.The primary aim of this study was to conduct a cost analysis of participation in continuing professional development via social media compared with live conference attendance.Clinicians interested in musculoskeletal care were invited to participate in the study activities. Quantitative data were obtained from an anonymous electronic questionnaire.Of the 272 individuals invited to contribute data to this study, 150 clinicians predominantly from Australia, United States, United Kingdom, India, and Malaysia completed the outcome measures. Half of the respondents  believed that they would learn more with the live conference format. The median perceived participation costs for the live conference format was Aus $1596 . The perceived cost of participation for equivalent content delivered via social media was Aus $15 (IQR 0.00-58.50). The majority of the clinicians  indicated that they would pay for a subscription-based service, delivered by social media, to the median value of Aus $59.50.Social media platforms are evolving into an acceptable and financially sustainable medium for the continued professional development of health professionals. When factoring in the reduced costs of participation and the reduced loss of employable hours from the perspective of the health service, professional development via social media has unique strengths that challenge the traditional live conference delivery format. Professional development is essential in the health disciplines. It allows the health workforce to maintain clinical currency, informed by emerging evidence, and supports best practice ,2. Best Continuing professional development (CPD) can take many forms—from in-services and journal clubs, to courses and conferences, and Web-based activities. Each mode of engagement has its own unique strengths and weaknesses . A journThe majority of clinically relevant evidence does not survive the journey from researchers to clinicians at the point of care . This reSocial media is designed to level information hierarchies, allowing the user to contribute directly to the sharing of information between individuals and communities of practice. Social media is now a mainstream information-sharing pathway, in part due to its speed, worldwide reach, and flexibility in access . MaloneyKnowing the cost and value of educational approaches informs decisions and choices about learning and teaching practices . It infoAnalyses of costs involved in CPD of clinicians can be conducted from many viewpoints. The provider incurs costs of delivering the content, participation costs are borne by the learner, and the health service has significant costs in the release and subsidy of staff to attend professional development activities . Where hThe primary aim of this component of the investigation was to analyze the opportunity costs of participation in CPD of the health disciplines via social media, compared with live conference attendance. The secondary aim was to investigate the acceptability of social media as a method for translating evidence to practice for clinicians, from the perspective of willingness-to-pay analysis of health professionals for a hypothetical social media professional development subscription.A cross-sectional design was undertaken to answer the research questions. Quantitative data were obtained from an anonymous electronic questionnaire. Ethics approval was obtained through the Monash University Human Research Ethics Committee .This study was completed as one arm of a larger study investigating the potential role of social media for CPD and translational research. The detailed methods of this study are provided elsewhere . In brieOf the clinicians, educators, and researchers who accepted the invitation, a filter was applied to reduce the potential participants to only those clinicians interested in musculoskeletal care (n=272), thereby aligning their field of interest with the scenarios presented in the study. No restrictions were made to the health discipline, age, or country of the participants. Undergraduate students were eligible to participate if they were actively engaged in the clinical practice phase of their education.In the absence of a validated survey to obtain the required financial data for this population and context, a survey was developed by the research team including a tool to elicit willingness to pay for particular services using a stated preference approach . The surDemographic data regarding age, country, and health discipline.Perception of educational outcomes contrasting live conference attendance with social media–delivered professional development.Participants’ willingness to pay for any of the three options: a live conference format, social media–based format, and a live conference supplemented by a social media platform.Participants’ perceived costs of participation in live conference attendance, compared with a social media–based platform for the same information content.The perceived number of effective employment work-hours lost through attending a live conference format, compared with a social media–based format.Participants’ willingness to pay for a hypothetical social media subscription that provides evidence and practice updates.The “conference” scenario provided to contextualize the question to participants within the survey was as follows:There is a conference being offered in the field of your area of clinical interest. It has leading local and international experts in the field to present their latest research, and discussions and panels on key issues in the field. The conference is two days duration, held on a Wednesday and Thursday, in Melbourne, Australia.Live conference attendance costs included conference fees, travel, accommodation, meals, and any other significant expenses anticipated by the respondent. Costs for attendance via social media included Internet access costs, along with any other significant costs anticipated by the respondent. A generic attendance fee price was set by first converting the respondent’s answers to their willingness to pay to the same currency  and then calculating the willingness to pay for each format.The hypothetical subscription service was described to participants as being able to deliver 1 message per week of 150 characters, concerning updates in practice in the field of musculoskeletal care, for 48 weeks of the year, with a link to further source of information such as a journal article. To help contextualize a social media post of this nature, a screen-image of an example is provided in All financial data contributed were converted to Australian dollars before computations were made. Currency conversion rates were taken from Xe.com, on October 20, 2014. Data were presented in summary format as median and IQR in Australian dollars. The average work-day length was taken at 7.25 hours.Of the 272 clinicians invited to contribute data to this study, 150 completed the study’s outcome measures . Participant demographic details are represented in The majority  of respondents indicated that they were willing to pay for a social media subscription service targeting their area of professional development need. The hypothetical service delivered was 1 message per week of 150 characters, concerning updates in practice in the field of musculoskeletal care, for 48 weeks of the year, with a link to further source of information such as a journal article. The median price, reported for those who indicated they were willing to pay for a subscription, was Aus $59.50 .One-third of the respondents  felt that they would have the same educational outcomes whether the information was delivered within a live conference format, or via a social media–based format. Half of the respondents  believed that they would learn more with the live conference format, and the remaining 14% (22/150) felt that they would learn more from the social media–based format.The respondents reported a willingness to pay for live conference registration in the order of Aus $342 . Their willingness to pay for the social media–based equivalent was valued 68% less, at Aus $110.50 . The live conference format supplemented by a social media platform was valued at an equivalent rate to the live conference only, at Aus $350.00 .The median perceived participation costs for the live conference format (not including registration) was Aus $1596 . The cost of participation for the social media–based equivalent is Aus $15 . A subanalysis looking at Australian-based clinicians who would not need international travel to attend the base scenario conference (n=54), placed the median cost of participation for live conference attendance at Aus $122.50 (IQR 50.00-506.25).Respondents indicated that they would need to access a median of 2.76 days of leave  to attend the mock conference presented in the base scenario. In contrast, the respondents reported that they would require just over one day of leave  to attend the social media–based equivalent.The perceived costs of participation in CPD via social media, compared with live conference attendance, were far lower for the social media–based equivalent format, regardless of whether travel costs were included or excluded. Findings suggest that the potential savings in staff hours for a health service provider, releasing staff from clinical duties for attendance of CPD activities, were 12.25 hours per attendee. Interestingly, approximately half  of the respondents indicated that they believed they would learn either the same, or more, from the social media–based format than its live conference alternative.Participants rated their willingness to pay for the social media–based format substantially lower than the live face-to-face alternative, indicating that it is of a lower perceived value. This may reflect the perception of lower costs to the education provider, which should be passed on to the consumer as a reduced registration fee . This coThe majority of the clinicians indicated that they would pay for a subscription-based service, delivered by social media, to the value of Aus $59.50. This finding may indicate that there is an increasing readiness in the health professional sector for professional development delivered by social media, or perhaps opportunity for a sustainable business model for providing this service. However, an analysis of the barriers, risks, and rewards for such an activity was outside the scope of this study.The overarching picture created by this research is not that social media provides equivalent educational benefit to conference presentations for less cost. There are a large number of tangible and intangible benefits to face-to-face conferences, such as networking opportunities, lengthy discussions, along with relaxation and creativity that comes from a change of work environment. Rather, this research provides important first steps scrutinizing the cost-effectiveness of our CPD activities, and the current degree of acceptability of social media as a medium for professional development.Just as the methods of education are changing for undergraduate education, through simulation, social media, and other technology-enabled pedagogy, so it is in the professional development environment. It is interesting to consider that although didactic lectures are arguably the mode of delivery least supported by evidence to change practice and to generate discussion ,19, whenThere are a number of limitations that may affect the accuracy and generalizability of this study’s findings. The mode of circulating the invitation to participate in this study included social media—and therefore could have created a selection bias toward participants who value social media more highly. The participants were spread across a wide geographic area, which may hide in-country differences; however, this is arguably quite authentic for any CPD provided via social media due to its ability to overcome geographic boundaries. Few who declined the invitation to participate in the study volunteered their reason for doing so, removing the ability to learn more about the nonparticipators and their potential impact on any selection bias. Another limitation is the narrow scope of the study, as it is focused only on the perceived economic costs of the different conference formats. As raised earlier, there are a number of personal or professional factors that may contribute to the participant’s overall perceived benefit and final determination of value for the learning. Perhaps individual learning styles or confidence in navigating and engaging with Web-based technologies affect the feasibility of using social media for professional development. The same could be said for the perspective of the health service, with indirect benefits being obtained such as improved institutional profile. The findings are also influenced by who bears the cost for the education. Some learners would attend conferences through project funds, subsidized by their employers, or through their own salaries, with each variation potentially influencing the consideration of learners to attend CPD activities and the subsequent costs of participation. Likewise, the study did create the assumption that the individual, rather than their workplace, would provide the costs of accessing any social media–based education. As with all stated preference techniques used to elicit willingness to pay, there may be warm glow and part-whole  biases, Further studies within this line of research may choose to evaluate the cost-benefit of a larger variety of CPD methods, with provision for measuring actual knowledge acquisition. The assumption of greater networking and professional socialization occurring via live event attendance in contrast to a purely Web-based format could also be revealing. Given that emerging research is showing evidence of social media being able to positively impact behavior change in the health disciplines ,22, an aSocial media platforms are evolving into an acceptable and sustainable medium for the continued professional development of health professionals. In contrasting a 2-day live conference under the conditions of this study to equivalent content via social media, approximately half of the clinicians felt that they would learn the same, or more, via the social media–based format. When factoring in the significantly reduced costs of participation and the reduced loss of employable hours from the perspective of the health service, professional development via social media has unique strengths that may challenge the traditional live conference delivery format. Further evidence of the increasing role of social media in the translation of emerging evidence to clinical practice is highlighted in 78.1% (114/146) of the clinicians indicating their willingness to pay for a social media subscription, which would provide a weekly evidence-based practice point in their field of clinical interest. It is anticipated that professional development via social media will continue to offer viable and more cost-effective options than the more traditional methods currently available. Further investigations into CPD that include considerations of cost and value are important for ongoing improvement in the effectiveness and efficiency of our health workforce skills and training.


Attention Deficit Hyperactivity Disorder is prevalent in adulthood, resulting in serious impairment across multiple domains of living. Despite clinical guidance recommendations, the relative infancy of research on service provision for adults with ADHD, along with the evidence transfer gap, means that there is a lack of specific frameworks for service delivery. Igniting research and developing service delivery frameworks within adult ADHD is an essential step in the provision of effective services for adults with ADHD.Following the methodology used in previous related research that utilises a Participatory Action Research approach, we gathered data from clinicians and service users on the domains of living in which they wish to create change, and the steps and end point of the change process. This data was utilised, alongside data gathered from previous research and policies, to develop the domains of assessment for the ADHD Star, and the scale on which change is assessed.The resulting tool, the ADHD Star, consists of eight domains: understanding your ADHD, focus and attention, organising yourself, friends and social life, thinking and reacting, physical health, how you feel and meaningful use of time. Each domain is rated on a five-point scale, the ‘ladder of change’, ranging from ‘stuck’ to ‘choice’.The ADHD Star offers a guiding framework for the development of care pathways and subsequent service provision for adults with ADHD, based on multi-disciplinary, holistic and person-centred care. Attention Deficit Hyperactivity Disorder (ADHD) is a neurodevelopmental condition characterised by inattention, hyperactivity and impulsivity, which present in at least two settings, interfering with functioning . The meaResearch on adult ADHD has focused on symptomatic improvement with medication , 19 and In addition to a dearth of research on service provision for adult ADHD, there are well-documented barriers to the application of any research evidence to the frontline of health care. The ‘evidence transfer gap’ has been linked to the size and complexity of the research, difficulties in developing evidence based clinical policy, ineffectual continuing education programmes and poor access to best evidence and guidelines . For ADHThe development process for the ADHD Star closely followed the established four-stage process for developing an Outcomes Star , and as Experts from Triangle Consulting Social Enterprise facilitated the workshops with clinical practitioners in adult ADHD, between June 2013 and June 2014 in Yorkshire, UK. The facilitators have developed a number of Outcome Stars based on the same methodology since 2003 and are the definitive authorities internationally. Health and allied professionals from the Service for Adults with ADHD, South West Yorkshire Partnership NHS Foundation Trust participated in the workshops. This service was established in 2009 and has a catchment area of approximately 1.2 million people in West Yorkshire. The professionals involved were three Psychiatrists, two Clinical Psychologists, two Specialist Occupational Therapists, two Specialist Nurses, one Senior Clinical Pharmacist, one Principal Social Worker, one Senior Medical Liaison Advisor from a Pharmaceutical Company and two Senior Probation Service Officers. A diverse selection of service users and carers with links to this Service also participated in the data creation. This group had excellent knowledge of adult ADHD and involved the participation of representatives from two established service user and carer Charities.During workshop 1, the facilitators delineated a focus of investigation to help formulate a hypothesis that the project would examine. The discussion was informed from previous research by the lead author .i.What are the main areas in which services and service users seek to create change?ii.What is the desired end point of the change process?iii.What model of change describes the core steps that service users take on the journey towards the end point?Three key questions were derived:i.Bringing to mind an individual who has undergone a substantial change and identifying the key areas of change.ii.The use of metaphor and drawing to get a sense of the whole or essence of the change people undergo.iii.Structured questioning exercises to draw out the change steps one by one in each outcome area; drawing out concrete information about the signs of change in great detail based on the experience of the professionals, service users and carers.Focused exercises during workshops 1 and 2 generated data on participants’ subjective experiences of ADHD. A number of different techniques were used to draw out the experience and the implicit models that professional and service users and carers held about adult ADHD including:Further data was gathered from a review of the evidence base including key policy documents, National Guidelines, and relevant published research on adult ADHD.Following each workshop, the facilitators examined the transcripts and notes created by the participants and facilitators. A method of phenomenological sense-making described by Wertz  was follThe answers to the three questions outlined in Step 1 were presented back to the professionals in the form of a printed version of the ADHD Star for feedback and testing. Through an iterative process of sharing, listening, refining and sharing again, the outcome areas, the model of change and descriptions of the steps towards change in each outcome area were honed until they truly resonated with the professionals and service user and carers.An initial draft of the ADHD Star was developed following workshop 1, and presented in workshop 2, at which point, further structured questioning generated feedback from all participants. An amended version of the ADHD Star was then piloted during a 6-month period. Fifteen adults accessing the Service for Adults with ADHD participated in the pilot through the completion of the ADHD Star with a health-care professional. This was a sample of convenience in which the Star was used as part of the Service day to day practice of care planning. They had combined type of ADHD, did not have any other comorbidity, 11 were male and 4 were female with an average age of 24 years old; professionals and service users recorded their experience through questionnaires. During the workshop 3, the results of the pilot were reviewed [including feedback and ADHD Star data] and the experience of participants was again shared. The feedback was mainly about reducing the steps of the ‘ladder of change’ from ten to five and comments about specific descriptors of change in the text. On the basis of this, further revisions were made to the ADHD Star and facilitators and participants approved the final version.first aimed to understand the aspirations and goals of service users and determine a meaningful and structured ‘journey of change’ across disorder-specific domains of need. Such an approach should define the desired outcomes of a person's life, based on the goals that they set for themselves. These goals should be individualised and consider: a decent place to live, employment and/or opportunity to contribute, education, friends and recreation outlets. Together, these outcomes will comprise the quality of one's life [The aim of the current advancement was to develop a tool to serve as a framework to guide service provision for adults with ADHD. We e's life .Second, we aimed to develop a tool that incorporated this knowledge in a way that was accessible to professionals and service users. Outcome Stars developed by Triangle Consulting Social Enterprise have already been successfully utilised in health services in the UK [n the UK –47, therThe ADHD Star addresses a gap in the current provision of services for adults with ADHD, offering a person-centred measure of progress in meaningful dimensions of change. Currently, instruments utilised with adults with ADHD in the UK healthcare system  focus onThe ADHD Star offers a basis of care delivery for adults with ADHD, which has many advantages over current practice. First, it emphasises collaboration between service users and health-care professionals. Engagement with service users can be improved through the conversation generated by the tool. The outcome of this conversation is a shared care plan guided by adult ADHD specific domains that will resonate with the individual’s needs. A predicted consequence of this person-centred care is an improvement in adherence with proposed interventions and reduction in outpatient non-attendance rates. Second, the ADHD Star ensures that several domains of potential improvement will be considered as part of the assessment, thus opening the opportunity of multidisciplinary plans to be formulated and broader, holistic interventions applied. Third, the ‘ladder of change’ not only provides the opportunity to assess the service user’s current functioning, but also identifies the next step along that journey, thus ensuring robust goal-setting. Fourth, the ADHD Star enables different healthcare professionals to offer specialist input according to their skill and training across a specific domain, strengthening professional identity and specialisation. Fifth, when reviewed accordingly, the ADHD Star can be used as a tool to enable outcome-based commissioning.There are some potential limitations to the implementation of the ADHD Star in healthcare services. Administration can take approximately two hours, which some services would deem too time-consuming. However, this time is spent in collaborative care-planning with the service-user, and will ensure meaningful goals are set and enhance commitment to agreed interventions. Therefore, we argue that ultimately, the time spent administering the ADHD Star will be saved elsewhere in failed interventions, and disengagement of service users. The ADHD Star was specifically designed to focus on meaningful outcomes for service users, and thus purposely omits ‘hard’ outcomes, i.e., symptom reduction. In isolation, the ADHD Star would neglect these outcome areas, which may be important to assess for monitoring the success of appropriate medical interventions as recommended by many authorities . Thus, wPeople with ADHD present in adulthood with impairments that have been developing for years, which are attributed to their symptom experience. As a result of this longevity, a framework is required to underpin a programme of evidence-based multidisciplinary interventions that have a clear direction and goals. We suggest that the ADHD Star offers such a framework and serves as a means to monitor outcomes for the purposes of service development. Future research should focus in investigating if the ADHD Star correlates with change on existing measures of ADHD-related impairments in quality of live or objective changes in an individual’s life such as changes in income, job status, housing, education and romantic relationship status.


Recently, public and political interest has focused on people living with rare diseases and their health concerns. Due to the large number of different types of rare diseases and the sizable number of patients, taking action to improve the life of those affected is gaining importance. In 2013, the federal government of Germany adopted a national action plan for rare diseases, including the call to establish a central information portal on rare diseases .The objective of this study, therefore, was to conduct scientific research on how such a portal must be designed to meet the needs of patients, their families, and medical professionals, and to provide high-quality information for information seekers.We chose a 3-step procedure to develop a needs-based prototype of a central information portal. In the first step, we determined the information needs of patients with rare diseases, their relatives, and health care professionals by means of qualitative interviews and their content-analytical evaluation. On the basis of this, we developed the basic structure of the portal. In the second step, we identified quality criteria for websites on rare diseases to ensure that the information linked with ZIPSE meets the quality demands. Therefore, we gathered existing criteria catalogs and discussed them in an expert workshop. In the third step, we implemented and tested the developed prototypical information portal.A portal page was configured and made accessible on the Web. The structure of ZIPSE was based on the findings from 108 qualitative interviews with patients, their relatives, and health care professionals, through which numerous information needs were identified. We placed particularly important areas of information, such as symptoms, therapy, research, and advisory services, on the start page. Moreover, we defined 13 quality criteria, referring to factors such as author information, creation date, and privacy, enabling links with high-quality information. Moreover, 19 users tested all the developed routines based on usability and comprehensibility. Subsequently, we improved the visual presentation of search results and other important search functions.The implemented information portal, ZIPSE, provides high-quality information on rare diseases from a central point of access. By integrating the targeted groups as well as different experts on medical information during the construction, the website can assure an improved search for information for users. ZIPSE can also serve as a model for other Web-based information systems in the field of rare diseases.RR1-10.2196/7425 In Germany, an estimated 4 million people live with rare diseases . Rare diCurrently, patients, their families, and health professionals have some difficulties in finding high-quality information on rare diseases . AlthougApart from the aforementioned sources, centers for rare diseases and patient organizations often provide comprehensive and reliable information. Especially for patients and their relatives, the latter are important contact partners that help them access specialized care or offer advice on all questions relating to their disease. For people affected by a rare disease, physicians can be another important source of information -12. HoweTherefore, this project aimed to conceptualize and implement a central information portal on rare diseases (ZIPSE) on the internet, through which people affected by a rare disease, their families, and relatives, as well as medical professionals can obtain access to high-quality information in German language. This should be done based on scientific methods and with the involvement of the different target groups. However, the portal’s editorial staff will not be generating the information provided on ZIPSE. Rather, it will identify, check, and link with ZIPSE, existing information sites on rare diseases, if they provide user-relevant information.To develop an information portal that suits the needs of patients, their relatives, and health professionals equally, over the entire course of the project, we aimed to integrate all target groups who may use the portal in the future. To ensure that the information provided on ZIPSE fulfills the needs of each target group as closely as possible, we initially evaluated the information needs of patients, relatives, and people working in the health care sector. Due to insufficient data on information needs in the field of rare diseases, we decided to use qualitative methods. For patients and their families, we developed an interview guide for eliciting information about their medical history, diagnostic processes, experience of living with the disease, and information searches. As many patients and their relatives ultimately join patient organizations, which can influence their awareness and knowledge of rare diseases, we asked them about their early experience of information gathering. To test whether the interview guide is suitable to identify individuals’ information needs, it was pretested with 2 patients and 1 relative. We subsequently adjusted the guide for those diagnosed before or shortly after birth, who could not remember their diagnostic paths.To recruit a broad and balanced sample, we formed 11 groups of rare diseases at the beginning of this study, which represented a comprehensive variety of rare diseases. We planned to interview 6 patients or their family members in each group. Moreover, we conducted 10 interviews with patients who had waited for at least 10 years for diagnosis. Thus, we intended the sample to comprise 76 patients and close relatives. However, upon saturation of interview data, we found that a smaller sample was sufficient. Participants were recruited through the Freiburg Center for Rare Diseases at the University Medical Center Freiburg, University of Freiburg, Germany.Our final sample involved a total of 68 participants, including 55 patients and 13 relatives . Due to To identify the information needs of health care professionals, we decided to conduct expert interviews. For this, we developed and pretested different structured interview guides for the different groups surveyed. In our sample, we considered physicians who are not related to centers of rare diseases and hence are inexperienced in information searches on rare diseases. These included general practitioners and medical specialists in private practice, as well as clinicians. Moreover, we interviewed medical technical assistants from in and out-patient care. Thus, experts in the care system, who are specialists in the field of rare diseases and guide patients or people suspected of suffering from a rare disease by the appropriate points of contact, comprised the interview sample. Apart from sociodemographic variables such as gender and age, other parameters integrated in sample selection included the nature of practice and geographical location. We did not strive for a certain sample size at the beginning of this study, but rather tried to reach theoretical saturation by conducting as many interviews as necessary with each sample group . The results of the interviews with the doctors were validated in a quantitative Delphi survey. Our final sample of health care professionals involved 28 physicians, 6 nurses, 4 guides, and 2 biologists.We analyzed the interviews according to the structured content analysis method developed by Philipp Mayring . Each auAfterwards, an extensive system of categories using a deductive-inductive approach was developed. Therefore, the researchers processed 5 interviews to transfer the contents from the marked text passages into main- and sub-categories that represent detailed aspects of people’s information needs (inductive approach). Additionally, the researchers derived several categories (deductive approach) based on previous research on current information on rare diseases from the internet and published literature review -17. ThesFurthermore, we presented and discussed the information needs found in the interviews in 4 focus groups, to enable consensual validation. Participants of the focus groups were recruited chiefly from the initial study sample. In addition, some consultants from patient organizations were invited to participate. On the basis these results, the basic structure of the ZIPSE portal and information paths were developed.Defining the quality criteria for websites on rare diseases was the next step, as, owing to the large number of rare diseases, we planned to provide references to other internet sites instead of providing primary information. Therefore, we examined all quality certifications, catalogs of criteria, and recommendations for information on the Web existing in Germany, and compiled them in 1 conceptual map. In a workshop, several experts on quality of online information discussed this conceptual map with the project team to decide which quality criteria should be considered while linking information websites with the ZIPSE portal. Accordingly, we created a set of specific quality criteria on rare diseases.Additionally, we conducted extensive research on existing German information websites on rare diseases to create a basic database for the subsequent inclusion of websites in accordance with the quality criteria. Therefore, we screened the internet for information websites on rare diseases using the German Orphanet list of rare diseases and their synonyms . This liWe used the information paths and functions developed based on the derived information needs to develop a prototype information portal. Thus, we set up a Uniform Resource Locator, on which essential elements could be activated and tested it concomitantly . InitialThe findings of this study revealed a variety of information needs of patients with rare diseases and their families, which are published in detail elsewhere . On the Content analysis showed that health care professionals’ needs partly overlapped with those of patients and their relatives. According to the respondents, doctors preferred to have basic information  about rare diseases before diagnosing the disease and assistance in the diagnostic process . Once the disease is diagnosed, the information needs to be shifted to the field of therapy coordination. The respondents assigned great importance to information about the counseling and care of patients with rare diseases as well as to a list of referred physicians and experts for further assistance. In addition, they deemed information on possibilities of exchanging experiences with other health professionals as well as medical education and training in the field of rare diseases necessary. The health care professionals also placed importance on research . All the health care professionals stressed the importance of patient organizations and self-help groups. We verified the results of the interviews with the doctors in a Delphi survey.We then used these information needs to further develop the ZIPSE information portal by placing these main information areas prominently on the ZIPSE start page, as well as by integrating them in the layout of the hit list display. Information on registered websites is assigned to these topics so that users can easily search those information topics. Clearly understandable icons, which are displayed on the hit list, indicate what information each individual information website covers.Overall, we identified 9 criteria catalogs and guidelines with recommendations for high-quality health information on the internet from a literature review. A total of 304 single items were extracted, which were reduced to 163 different criteria. Considering the large number of websites on rare diseases, quality criteria for the ZIPSE portal could not refer to the accuracy of all information offered, but to the quality of the information as well as of the preparation of information and of the website. Therefore, we selected criteria to assess how, by whom, and based on which sources the offered information had been collected; how data safety was to be addressed; and how users could contact the website operator. In a workshop with several experts from the field of medicine regarding high-quality online information, the conceptual map comprising 163 different criteria was reduced to a catalog containing 13 criteria, which was used for assessing information websites . Among oWe transferred all the identified quality criteria into a Web-based questionnaire that can be filled online either by the providers of information themselves or by the ZIPSE editorial team. Moreover, we conducted a comprehensive research on existing websites on rare diseases. We identified several hundred websites including those of patient organizations, research institutes, and care facilities and transferred them into a database containing information on the URL, the website provider, and the diseases. Subsequently, we contacted the website provider with a request to register or the editors of the ZIPSE portal registered their information themselves. The information websites were then visible and saved in the administration area of the portal’s home page. When website providers registered themselves, the editors of the ZIPSE portal reviewed all information for accuracy and integrity. If necessary, we corrected or completed data. Completely revised information websites that met the essential criteria were then activated, after which they were visible to people searching for related information in the hit list. Nonquality assured information websites were linked to a downstream area.We set up a webpage on which we placed the basic developed framework of the ZIPSE portal . During To check whether the information paths, which were developed earlier, suited the target group’s specific needs, we conducted focus groups as well as usability tests. Initially, we created an extensive presentation to provide patients with rare diseases and their relatives an overall picture of the portal. Within the framework of focus group discussions, the participants reported high satisfaction regarding clarity, functionality, and comprehensibility. Nevertheless, they reported some points for improving the layout, such as the structural arrangement of the start-up page as well as the display of the hit list, among others. The results directly contributed to the further development and optimization of the ZIPSE portal. Elements on the home page, which were less important to the testers such as the offer to recommend or register a website, can now be found at the bottom of the start-up page, whereas main information areas as well as a mapping of care facilities were placed at a more prominent location. Additionally, new, self-explanatory pictograms for the hit list were created. In the usability tests with patients and physicians, it followed that several aspects could be revealed, which we subsequently revised, including a larger representation of the search field, a clearer presentation of the filter options, and an unambiguous representation of icons and images.Creation processDo you perform systematic (literature) research for information creation on your home page? If yes, please describe this process.Are experts involved in information creation? If yes, which?Is the process of building information on the website documented? If yes, what does this documentation look like? (Please describe)Do you illustrate the information building process for your users? If yes, please describe the presentation and name the respective Uniform Resource Locator (URL).AuthorsGeneral information  about the authors has been mentioned.Other persons, who contributed to developing information, are mentioned.Contents authored by users have been labeled and equipped with a user name.SourcesDo you provide self-created information?If no, do you mention external sources?Creation and updating The creation date of the information has been mentioned.The updating date of the information has been mentioned.Data security By means of a privacy policy, do you inform the user about the usage, storage, and disclosure of personal data?Do you inform the user in a prominent position about the storage of personal data for internal usage  with an analysis tool? Does the user have the option to disagree?Does the user need to agree actively to the disclosure of personal data to third parties?Declaration of the evidenceIs all medical information evidence-based, whereby it is discernible on which basis points are made ?Do you show the user references to limits of the evidence respectively name more evidence needs?Marking of conflicts of interestsAdvertisements have been marked as such clearly.Sponsors have been named.Targets and purposes of the home page have been published clearly .The funding (except from self-financing) source has been published.Conflicts of interests have been declared.Consideration of target groupInformation is target-group specific.It is discernible to whom the information is addressed ?EvaluationAn archive of former or changed contents exists.The accuracy of all the information has been checked consistently.Review processDo you have an internal review process  for the evaluation of the contents?If yes, please describe it.Characteristics of the website (low-barrier)Did you check the website for accessibility through a Barrierefreie Informationstechnik-Verordnung-Test (better: barrier-free information technology regulation test?)? If yes, how many points has the website achieved on this test?Is the font size of the website adjustable?Do you consider persons with color deficiency in your coloration?Can the main menu be accessed without a mouse?Is the information available in a simple language ?Is the information website available in several languages?It is possible to subscribe to a newsletter?Is the information available in a printable version?Are multimedia contents available ?Imprint Does the imprint contain the following information:Name and address of the publisherEmail address of the publisherDeclaration of the commercial register, the register of associations, etc, in which the provider is registered, and the respective registration number)Contact Users can provide feedback or contact the operator.A contact sheet is easy to access.As a result of the procedure described above, we created a functioning information portal. When searching for a disease using the search field, a list of linked information websites appears . In thisDuring the course of the project, we developed and implemented a prototype of a central information portal on rare diseases that fulfills the needs of patients, their relatives, physicians, and other health care professionals. Currently, 720 information websites have registered on the portal. About half of the websites meet the essential quality criteria, whereas the other half can be found in the nonquality assured area of the portal. A total of 239 websites refer to genetically caused diseases . Another 92 websites focus on neurological conditions . This is followed by 72 websites on neoplastic diseases  as well as 40 websites on developmental defects during embryogenesis . All other disease groups are in the lower single-digit percentage range.The information needs identified through qualitative interviews were in line with different international studies -17 as weTo offer added value to people with rare diseases, continuous maintenance and optimization of the information portal and its structures and services is of utmost importance. Not only must existing links and contents be kept up to date, but other information websites, including websites from English-speaking countries, must also be identified and integrated within the portal. Especially for people with diseases for which little information is available in German, such information in English could be very useful. Therefore, we will maintain, update, and continuously develop ZIPSE. However, to sustain the availability of ZIPSE, a major challenge for the near future would be to find funding sources. To make sure that all work continues, we are constantly developing different solutions for sustainable funding after the end of this publicly funded project.By compiling information on rare diseases at one central point of access, in the future, people can identify gaps in knowledge about specific diseases more easily. One can infer that there is insufficient information on all rare diseases, especially on very rare diseases, where only little research has been carried out owing to financial restrictions as well as small numbers of available patients. Without research, no knowledge and information can be generated. This explains why for many (very) rare diseases only little or no information is available online. Addressing these knowledge gaps could be an important task for future studies.Our concept of a central information portal on rare diseases could be useful as a model for other information providers in the field of rare diseases, for the development of similar information systems. Even though there is a range of other information systems providing information on rare diseases to different target groups, this is the first one that was developed by using extensive scientific methods and integrating all target groups in its development. Due to this study’s underlying scientific approach regarding the collection of people’s information needs and definition of quality criteria, as well as the involvement of patients, their relatives, and physicians at all stages of the project, one can assume a high target group–specific alignment that could be transferred to other systems.Due to the limited financial and personnel resources in this publicly funded research project, some of the ideas regarding the structure and function of the information portal could not be fully developed. These include, for example, the establishment of a newsletter that informs users about newly included information sites on specific diseases or issues when requested. This could be a task for future operators of the website.Dealing with the various challenges arising from rare diseases has become an important task for most health care systems. Especially, the gaps in knowledge and the uncertain quality of information pose challenges for the establishment of networks of information infrastructures. Even though there is information on many rare diseases, it is often insufficiently known and used due to low visibility. Establishing a central information portal like ZIPSE makes the existing but widely dispersed information accessible to the various groups of people dealing with rare diseases.For patients and their families, this offers an opportunity for easy access to extensive information on topics that are important to them, such as therapy, social and legal issues, and self-help. For doctors and other medical professionals, the ZIPSE portal can help to accelerate the diagnostic process and improve patient care by providing information on rare disease diagnostics, therapy, and specialized care facilities. Therefore, bundling high-quality information at one central access point can improve people’s health care sustainably. In the future, it will be easy to find trustworthy information for people living with a rare disease by using the ZIPSE portal. Furthermore, with reference to professional caregivers, reducing uncertainties in diagnostics and therapy could prevent the overuse, underuse, and misuse of information in the health care sector. Moreover, the ZIPSE portal can help raise awareness about rare diseases in general. One of the current challenges concerning rare diseases is not only missing information but also the lack of awareness about them. Along with closing gaps in people’s knowledge, the ZIPSE portal can help sensitize people regarding rare diseases.