Independent Research Institutes Research Articles

The autocratic bias: self-censorship of regime support

ABSTRACT Because of a perceived (and real) risk of repressive action, some survey questions are sensitive in more autocratic countries while less so in more democratic countries. Yet, survey data on potentially sensitive topics are frequently used in comparative research despite concerns about comparability. To examine the comparability of politically sensitive questions, I employ a multilevel analysis with more than 228,000 respondents in 37 African countries to test for systematic bias when the survey respondents believe (fear) that the government, rather than an independent research institute, has commissioned the survey. The findings indicate that fear of the government induces a substantial and significant bias on questions regarding trust, approval and corruption perceptions in more autocratic countries, but not in more democratic countries. In contrast, innocuous, apolitical questions are not systematically influenced by regime type.

COVID-19 Pandemic Vs. Digital Competences of Pupils and Teachers in Poland

Purpose: The purpose of this paper is to evaluate the digital competencies of pupils and teachers and analyse the education system in terms of its adaptation to turbulence caused by external factors such as the COVID-19 pandemic. Design/Methodology/Approach: The paper compares the selected research findings gathered by three independent research institutes on pupils' and teachers' levels of digital skills. The methods of desk research and comparative analysis were applied. These methods utilized the surveys' results on pupils' and teachers' digital competencies and statistical data. Findings: The research has shown that, on the one hand, the pandemic has exacerbated social inequalities in terms of digital competencies. On the other hand, it has revealed the need for pupils and teachers to quickly respond and adapt to changing conditions of operation. The pandemic has also exposed inadequacies in the education system. The conducted analysis has shown that acquiring digital competencies is essential for the whole society. Practical Implications: It is necessary to revise education systems and curricula in terms of content, technologies used, fields of study, and education levels. It is essential to monitor teachers' and pupils' digital competencies constantly. As far as access to infrastructure is concerned, monitor groups at risk of exclusion (families with many children and poor and those living outside of urban centers). Originality/Value: The pandemic phenomenon allowed for verification of the level of digital competencies in practice and the resistance of the Polish education system to the pandemic. The research has shown several aspects of problems that have arisen as schools have shifted to remote learning. These aspects include sensu stricto, the teachers', pupils', and parents' competencies, and the problems related to the infrastructure: connection speed, access to equipment, and incompatibility of curricula with the needs of the modern economy.

Public engagement with clinical research on social media; which visual medium works best? A 5-year retrospective analysis

‘Public engagement’ describes a collaborative relationship between scientists and the public we serve. This has the potential to improve clinical research and is encouraged by key research funding bodies, however the objective evidence base for effective approaches remains limited. Social media algorithms determine what content users see and are known to weight post media differently. While visual content is understood to improve reach and engagement broadly, less is known about which kinds of visuals are most effective for engaging people with clinical research. We present a five year retrospective analysis of public engagement with Facebook posts made by an independent medical research institute, classified by their visual media content. Inclusion of visual post media was associated with positive effects on both reach and engagement. We present medium and strong evidence that this effect was most pronounced for comics compared to other visual media types. This data evidences objective value of using comics and other visual media for public engagement with clinical research. The metrics evaluated are easily accessible on many social media platforms meaning this approach could readily be applied by other researchers to measure the impact of their public engagement efforts, and inform science communication strategies and resource allocation.

Fellowship Programs at Independent Research Institutions (NEH)

Fellowship Programs at Independent Research Institutions (NEH)

An Appraisal for the Need to Start Independent Research Institutes and Study Programs in Metabolic Engineering

Metabolic engineering deals with manipulation of metabolic pathways for overproduction of desired metabolites & macromolecules and reduction/deletion of unwanted metabolites & macromolecules. A large number of tools, techniques strategies & methodologies are used in the metabolic engineering of microbial, plant & mammalian/animal systems. Impressive advances have taken place in overproducing different categories of products Viz; biofuels, pharmaceuticals, neutraceuticals, cosmetics and many products relevant to different industries. In view of immense potential to bring about a next industrial biotechnology revolution, the need to establish specific goal oriented international research institutes on metabolic engineering has been emphasized apart from national institutes and study programs. Effort in this direction is environment friendly as well. At the outset readers are cautioned that manuscript is not a formal review or a discussion on the subject of “Metabolic Engineering” with respect to any specific topic or a living system but the purpose is to emphasize the need as mentioned above. Contents are adequate to think of this endeavor. Manuscript is a massive exercise after extensive scanning through the issues from the Journal “Metabolic Engineering”) Elsevier, since its inception –1999 January (Volume 1) till January 2021 (Volume 63) (22 years). In all they constitute 63 volumes, 122 issues and 15,700 plus pages. Total number of articles (papers) in the above is approximately 1600. Nearly 70% of these are with respect to “Microbial Systems”. Next in importance comes the papers which have major focus on general tools, techniques, methodologies, strategies etc. Manuscript mentions and gives a glimpse of different approaches used to achieve the desired goals referring to a list of predominant host microbes, plants and mammalian/animal systems investigated. Readers are advised to initially go through the special issues of the journal.

GENERAL PHYSIOLOGY FORMATION AND DEVELOPMENT AS A SCIENCE IN UKRAINE IN THE XIXth – DURING THE 30-ies OF THE XXth century

The purpose of the article is to highlight the General Physiology development main periods and tendencies in Ukraine, summarizing the regional research and educational centers’ achievements, as well as making conclusions on individual scientists’ achievements in the XIXth – the 30-ies of the XXth century on the world biological thought development background. The methodology of the research is based on the general scientific principles of objectivity, systematicity, complexity and scientificity. The author used the general scientific, interdisciplinary and special historical methods. The article is based on the factual material, archival documents that reveal basic physiological sciences and theories evolution, the organization of specialized departments and laboratories at higher educational institutions and research institutions of Ukraine. The scientific novelty of the article is that the author for the first time has demonstrated the regional scientific and educational centers’ formation peculiarities, their personalized composition and contribution to the basics of a human and animal physiology development. The Conclusions. It was proved that the world biological thought development had a significant influence on the General Physiology development systematic research in the Ukrainian lands. Several periods of the Domestic Physiology scientific foundations formation and development have been singled out. The first Physiological Departments were established within the Natural Sciences and Medical Faculties of universities during 1805 – 1861. During 1861 – 1917 the Physiology Departments were organized at the veterinary and agricultural institutes. Numerous scientists have made a significant contribution to the physiological research deployment in Ukraine, for instance, B. F. Verigo, V. Ya. Danylevskyi, I. M. Syechenov, V. Yu. Chahovets, I. P. Shchelkov. The number of Physiology Departments at the universities and at the pedagogical, agricultural, veterinary, zootechnical institutes increased dramatically during the 1920-ies and 1930-ies. Furthermore, Physiology Independent Research Institutes and Physiological Departments at some institutions were created. The scientific directions, which were subject to the most detailed processing, were revealed, for instance, Nerve and Muscle Physiology, Electrophysiology and Biophysics, Comparative Physiology of Aging, Endocrinology and Physiology of Work. The decisive contribution to their development has been made by V. M. Arkhanhelskyi, V. M. Vasylevskyi, A. M. Vorobyov, D. S. Voroncova, T. T. Huryeyeva, V. Ya. Danylevskyi, A. I. Yemchenko, E. M. Kogan, P. H. Kostyuk, H. P. Markelov, V. P. Prototypova, M. O. Rohovych, I. M. Sechenov, P. M. Syerkov, E. I. Synelnykov, Ya. P. Sklyarova, R. Yo. Feitelberg, G. W. J. Volborth, S. Yu. Yaroslava and others.

A Phase 2 Randomised, Double Blind Clinical Trial Assessing the Tolerability of Two Different Ratios of Medicinal Cannabis in Patients with Glioblastoma Multiforme (GBM)

Background: Glioblastoma (GBM) remains incurable. Patients seek complementary treatments when standard treatments are ineffective, or when cancer symptoms are uncontrolled. Cannabis has intense interest as both therapy and palliation for GBM, but little prospective controlled data exists. We studied the safety and tolerability of two different quality-assured medicinal cannabis preparations in patients with GBM, taking standard treatments. Patients and Methods: Patients with recurrent high-grade glioma (anaplastic astrocytoma or GBM) with no history of substance abuse enrolled in a single-centre phase II double-blind randomized clinical trial comparing two preparations of medicinal cannabis (tetrahydrocannabinol (THC) to cannabidiol (CBD), THC 1:1 CBD and THC 4:1 CBD) taken once daily at night. Retrospective historically matched controls were audited from clinical records as comparators. Results: Patient self-referral for screening was overwhelming (n=921). Both preparations were well tolerated. Side effects included dry mouth, tiredness at night, dizziness, drowsiness, and impaired motor coordination, but no serious adverse events were attributable to the intervention. Sleep was reported as improved from baseline in both groups (95% CI 2.4-2.77; p=0.009). Overall quality of life (FACT-Br) was improved from baseline in both groups with the 1:1 preparation favouring both physical (95% CI 6.49-7.92; p=0.025) and functional (95% CI 15-16.9; p=0.014) capacity. Disease control appeared no worse than historical controls; only 10% of patients experienced progressive disease during the study period, and median overall survival was 11 months. Conclusion: A single nightly dose of medicinal cannabis was safe, well tolerated and appeared to improve sleep, functional wellbeing and quality of life (QOL) compared to baseline, with no negative impact on disease control. The 1:1 preparation is favoured for future studies in people with high-grade brain cancer. Trial Registration: The trial protocol was registered with the Australian New Zealand Clinical Trial Registry (ANZCTR): ACTRN12617001287325. Funding Statement: The funding body, Bioceuticals Pty Ltd, had no involvement with the protocol development, implementation of the trial, collection nor analysis of the trial. The trial was conducted by an independent research institution, Endeavour College of Natural Health which was the initial sponsor for the trial which has now been transferred to Southern Cross University (SCU) due to the lead researcher transferring universities. The funding body paid fees directly to Endeavour and SCU for the trial and supplied the investigational products for the trial in kind Declaration of Interests: All investigators declare no conflict of interest with this study. Prof Charlie Teo and Dr Mike Sughrue are shareholders and founders of Omniscient neurotechnologies for brain tumours but does not conflict with this study. Ethics Approval Statement: The trial was approved by human research ethical committees (HREC), South Eastern Sydney Local Health District HREC: 18/028, University of Technology Sydney HREC: ETH 18-2761 and Endeavour College of Natural Medicine HREC: 20180821.

University vs. Research Institute? The Dual Pillars of German Science Production, 1950\u20132010

The world’s third largest producer of scientific research, Germany, is the origin of the research university and the independent, extra-university research institute. Its dual-pillar research policy differentiates these organizational forms functionally: universities specialize in advanced research-based teaching; institutes specialize intensely on research. Over the past decades this policy affected each sector differently: while universities suffered a lingering “legitimation crisis,” institutes enjoyed deepening “favored sponsorship”—financial and reputational advantages. Universities led the nation’s reestablishment of scientific prominence among the highly competitive European and global science systems after WWII. But sectoral analysis of contributions to science, technology, engineering, mathematics, and medical and health journal publications (1950–2010) finds that Germany’s small to medium-sized independent research institutes have made significant, growing contributions, particularly in publishing in higher impact journals proportionally more than their size. Simultaneously—despite dual-pillar policy implications—the university sector continues to be absolutely and relatively successful; not eclipsed by the institutes. Universities have consistently produced two-thirds of the nation’s publications in the highest quality journals since at least 1980 and have increased publications at a logarithmic rate; higher than the international mean. Indeed, they led Germany into the global mega-science style of production. Contrary to assumed benefits of functional differentiation, our results indicate that relative to their size, each sector has produced approximately similar publication records. While institutes have succeeded, the larger university sector, despite much less funding growth, has remained fundamental to German science production. Considering these findings, we discuss the future utility of the dual-pillar policy.

Empowerment Strategy on Micro, Small, and Medium Enterprises (MSMEs) During COVID-19 Pandemic in Indonesia: A Case Study of BRI Microfinance Center

Many Micro, Small, and Medium Enterprises (MSMEs) are impacted by COVID-19 pandemic in Indonesia, especially the ones who hasn’t fully adapted to the industrial revolution 4.0. Therefore, the right empowerment strategy is needed to develop the MSMEs and help them to strive during COVID-19 pandemic. Hence, this paper presents a research to evaluate the empowerment strategy of Indonesian MSMEs implemented by the BRI Microfinance Center (BMC), an independent research institution under BRI Group as the leader of microfinance in Indonesia. This research also analyse the potentials and problems faced by BMC in conducting their empowerment effort during the pandemic and formulate alternative strategies as recommendation for future improvement. As a case study with descriptive qualitative approach, the data collections are done by in-depth interviews on BMC’s key people and literature studies on supporting documents, and triangulation. The result presented in this paper has important points to deeply understand the existing MSMEs empowerment strategy in Indonesia implemented by BMC, the strategy shifts during the pandemic, and recommendations for strategy improvements. This paper will also complete similar researches regarding the studies on empowerment strategy to enhance the MSME’s competitiveness in Indonesia.

An assessment of opportunities and challenges for cross-border electricity trade for Bangladesh using SWOT-AHP approach

Regional electricity cooperation in South Asia, especially between Bhutan, Bangladesh, India and Nepal (BBIN), has been under debate recently. Recent discussions have gone beyond bilateral electricity trade to regional or tripartite trade. With limited energy resources and rapidly rising demand, cross-border electricity trade has been viewed as an alternative source of cleaner and lower price electricity supply in the long-term alongside domestic generation in Bangladesh. In this context, this study identifies barriers and opportunities for electricity trading for Bangladesh, focusing on the stakeholders’ perceptions. Theses stakeholder are representatives of public organizations in the power sector, Independent Power Producers, academia, geopolitical experts and research institutes. A well-structured SWOT analysis, in combination with Analytical Hierarchy Process (AHP), is used to identify the SWOT factors and subsequently rank them. Our analysis shows that the weaknesses and threats are more pronounced than strengths and opportunities for electricity trade from the viewpoint of Bangladesh. Several possible strategies are proposed to overcome the hindrances. Among the proposed strategies, a key strategy is the signing of a trilateral electricity trading agreement with joint development and implementation of cross-border power projects. However, to achieve these strategies, it will require meticulous planning, political will, and visionary leadership across BBIN sub-region.

Improving access to health of Migrants in France. Qualitative assessment of a national guide

Abstract The National Public Health Agency and the Committee for the healthcare of persons in exile are providing, in the service of professionals, a Practical Guide for the care and the accompaniment of Migrants Foreigners living in precarious conditions, in France. The 2015 edition of this guide has been subjected to qualitative assessment in order to gather information regarding its use, the way it is perceived by its users, as well as their subsequent expectations, in order to design a new version that is more adapted to their needs. The study was carried out in December 2018 by an independent market research institute with the following design: 24 face-to-face interviews, whose duration was 1h30min, involving current users or past users: 6 working in structures specialised in accommodation for migrants, 6 in health care facilities, 6 in municipal or departmental social service facilities.3 focus groups, of 7-8 people, whose duration was 2H30min, involving potential future users of the guide. The recruitment of the participants took place in 3 cities as well as the overseas departments. The findings show: the legitimacy of this guide which is co-produced by an official national agency and an association recognized for its expertise.the interest of a transversal and multi-professional approach which allows to better grasp the social, legal and medical support and carethe need for information and operational resources This assessment underlines the relevance of the content and the symbolic importance of this guide which ’materializes’ the needs in terms of access to the rights and health of migrant people, often overlooked by professionals and administrations. It is thus a vehicle of vocational training and advocacy on this subject. The study provides concrete ways of optimization, particularly via digitalization, in order to cope with the rapid obsolescence of information, the availability of local directories and the need for exchange of professional practices. Key messages A national guide co written by a national agency and an association is a relevant tool to draw attention to migrants needs. Qualitative assessment highlighted the operationnal and symbolic role of this guide to foster cross professionnal work.

Discovering the Secret Listener: Western Radio Broadcasts to Soviet Lithuania

The research of Western radio audiences in the Soviet Union was carried out by the department of Soviet Area Audience and Opinion Research, which was in charge of the RFE/RL; however, factual surveys were conducted by independent research institutes, which ensured that the results were neutral and no prejudices with regard to a particular broadcaster were present. The key indices to be measured were the size of the audience that listened to Western radio broadcasts as well as the listeners’ behavioral patterns. Making use of these parameters, the authorities of these radios were able to modify the character of radio programming, to design the content of the information provided, and to observe the potential influence of radio broadcasts in the context of ideological opposition. It is important to stress that based on the methodology and the amount of information available at that time, individual persons’ surveys conducted by Radio Liberty audience and the opinion research department were not adequate to what is considered, in the contemporary sense, proper public opinion research.

Luomus’ Genomic Resources Collection Available as Open Data Through FinBIF

There is an increasing demand for high-quality genetic samples for biodiversity research as the techniques are rapidly developing and the costs are decreasing. The Finnish Museum of Natural History Luomus, an independent research institute within the University of Helsinki holding and developing the national natural history collections, has joined the Global Genome Biodiversity Network (GGBN; http://www.ggbn.org/ggbn_portal/) and established a Genomic Resources Collection (GRC) in 2018. In March 2019, the Luomus GRC comprised 2500 DNA extractions and 4000 vertebrate tissue samples amassed in approximately the last 10 years. The DNA extractions are mainly of lichens, polypores, beetles, flies, molluscs and crustaceans of worldwide origin, reflecting the focal organism groups of research groups in Luomus. The deep-frozen tissue samples are mostly of Finnish birds and mammals, as accessions of vertebrate specimens acquired to Luomus’ collections are sampled. High-quality whole-genome DNA extracts will also be prepared. We expect the GRC to increase rapidly in numbers of samples within the coming years. Furthermore, the collection will also serve the many active research groups in the Faculty of Biological and Environmental Sciences of the University of Helsinki. The GRC collection follows the best practices of the Global Genome Biodiversity Network (GGBN) concerning long-term storage and physical quality of samples, and international agreements (the Convention on Biological Diversity, the Nagoya Protocol, CITES) as regards the legitimacy of the samples. The GRC samples are always cross-linked with the taxonomically identified and georeferenced voucher specimen from which it is separated. Each GRC sample gets a Unique Resource Identifier HTTP-URI, which is a derivative of the unique specimen ID used in Luomus’ Collection Management System (CMS) ‘Kotka’. The sample tubes are cryolabelled with the QR code on the lid of the tube. The voucher specimens are deposited in Luomus’ collections or in another international public repository. The data on the GRC samples form part of the Open Data distributed through the Finnish Biodiversity Information Facility FinBIF species.fi (Data policy: https://laji.fi/en/about/960), and will be made searchable at the web portal in 2019. The specific database functions to meet the needs of Luomus’ GRC are developed by Luomus’ Biodiversity Informatics Unit and implemented in Kotka. We have already implemented part of the database tools to manage the compliance with the Nagoya protocol. The tool for registering material transactions (donations / loans) makes use of the Application Programming Interface (API) provided by the Access and Benefit Sharing Clearing House (ABS-CH) and includes links to the ABS-CH webpage (https://absch.cbd.int/). The ABS-CH shows the contact person or organization details of the provider country, and the country-specific requirements for access to genetic resources, when present. The necessary information and documentation (letter of Prior Informed Consent, Mutually Agreed Terms, Material Transaction Agreement, and other permits) are linked from the material transactions to the relevant specimens.

African Books Collective: African Published Books in the North

This is a presentation about the African Books Collective that for some 30 years has distributed African published academic, literary and children's books around the world. The aim of the paper is to provide some insights into how books published in Africa are making their way to libraries with collections on Africa, and to discuss current and future trends; it being understood that ‘decolonising library collections’, the theme of this conference, would by rights involve acquiring and maintaining materials from outside the global North.Upon its creation in 1990, ABC represented a large number of university presses on the continent and independent publishers, some of which are large firms still trading today. Today few university presses are trading or publishing new books. This work was largely picked-up by private independent publishers and research institutes such as CODESRIA, OSSREA, the Institute of Southern African Studies and others.

Museum Archaeology in Serbia and the Myth of Museum Neutrality

The standpoint according to which museums present objective and unbiased facts dominates both the public and professional discourse. However, the widely accepted idea that museums can be trusted – because they are prestigious authorities, independent research institutions, morally and intellectually neutral, in constant quest for knowledge – is essentially wrong. From the inception of museums, over their many types, till today, not a single museum nor a museum professional, has been neutral. Museums are social constructs, and politics is a part of their base. 
 Nevertheless, the myth of museum neutrality perseveres, especially thanks to a large number of museums whose staff still proudly use their knowledge in order to collect and represent the museum material in an allegedly neutral and objective fashion, without interferences of reality and everyday life.
 The hypocrisy is evident in Serbia too, particularly in the case of historical narratives, but also obvious in permanent displays and exhibitions of archaeological material, as well as in the domain of museum archaeological research. The paper investigates the examples of apparent neutrality, the national, regional and local museums authorizing the achievements and superiority of the nation, glorifying the mediaeval history or celebrating the link to the Roman Empire, the ones that are the prestigious demonstration of authority, but as well the examples of personal interests and values that have formed the public discourse. These considerations raise the issue of ethics in museums.

International Outcome Inventory for Hearing Aids: Data From a Large Swedish Quality Register Database.

The purpose of this study was to analyze a database of completed International Outcome Inventory for Hearing Aids (IOI-HA) questionnaires obtained from over 100,000 clients fitted with new hearing aids in Sweden during the period of 2012-2016. Mean IOI-HA total scores were correlated with degree of hearing loss, unilateral versus bilateral fitting, first-time versus return clients, gender, and variation among dispensing clinics. The correlations with expectations, service quality, and technical functioning of the hearing aids were also analyzed. Questionnaires containing the 7 IOI-HA items as well as questions concerning some additional issues were mailed to clients 3-6 months after fitting of new hearing aids. The questionnaires were returned to and analyzed by an independent research institute. More than 100 dispensing clinics nationwide take part in this project. A response rate of 52.6% resulted in 106,631 data sets after excluding incomplete questionnaires. Forty-six percent of the responders were women, and 54% were men. The largest difference in mean score (0.66) was found for the IOI-HA item "use" between return clients and first-time users. Women reported significantly higher (better) scores for the item "impact on others" compared with men. The bilaterally fitted subgroup reported significantly higher scores for all 7 items compared with the unilaterally fitted subgroup. Experienced users produced higher scores on benefit and satisfaction items, whereas first-time users gave higher scores for residual problems. No correlation was found between mean IOI-HA total score and average hearing threshold level (pure-tone average [PTA]). Mean IOI-HA total scores were found to correlate significantly with perceived service quality of the dispensing center and with the technical functionality of the hearing aids. When comparing mean IOI-HA total scores from different studies or between groups, differences with regard to hearing aid experience, gender, and unilateral versus bilateral fitting have to be considered. No correlation was found between mean IOI-HA total score and degree of hearing loss in terms of PTA. Thus, PTA is not a reliable predictor of benefit and satisfaction of hearing aid provision as represented by the IOI-HA items. Identification of a specific lower fence in PTA for hearing aid candidacy is therefore to be avoided. Large differences were found in mean IOI-HA total scores related to different dispensing centers.

Pojazdy autonomiczne : wyzwania dla branży ubezpieczeniowej

Celem artykułu jest identyfikacja oraz analiza szans i zagrożeń dla branży ubezpieczeniowej, związanych z upowszechnieniem się pojazdów autonomicznych. W analizie wykorzystano dane i prognozy z dostępnych raportów niezależnych instytucji badawczych, przewidujące tempo rozwoju technologii pojazdów autonomicznych. W ciągu najbliższych kilku lat zmieni się też model globalny transportu związany z postępującą rezygnacją z posiadania indywidualnego pojazdu na rzecz korzystania w miarę potrzeb z floty pojazdów autonomicznych. Podstawowym motywem zmian będzie bezpieczeństwo, wygoda oraz niższe niż dotąd koszty. Bezpośrednie skutki rewolucji technologicznej dla branży ubezpieczeniowej to ograniczenie wartości wypłacanych odszkodowań związane z poprawą bezpieczeństwa ruchu drogowego. Nowy model transportu indywidualnego spowoduje jednak dramatyczne ograniczenie liczby pojazdów na drogach, a co za tym idzie znaczny spadek dochodów ubezpieczycieli ze sprzedaży ubezpieczeń komunikacyjnych, które obecnie są jednym z najważniejszych źródeł przychodu. (abstrakt oryginalny)

Impact of Integrated Care on patient satisfaction, perceived health behaviour and health maintenance in ´Gesundes Kinzigtal´: Interim results of a trend study

Introduction : 'Gesundes Kinzigtal' (GK) is a population-based integrated care pilot in Germany and is commonly rated a ‚flagship project‘ among Germany’s integrated care approaches. Founded in 2006, GK is managed by Gesundes Kinzigtal Ltd., in which the local physicians’ network has the majority of shares. GK cooperates with two statutory health insurers, AOK and LKK, whose insurants (about 33.000 people) are entitled to enroll into GK Integrated Care. About 10.000 insureds have enrolled into GK until now as active members. Besides GK’s general emphasis on prevention and health promotion, an important focus of GK’s strategy is to activate and empower patients. Correspondingly, the majority of GK members participate in preventive or health management programs offered by GK, and members are encouraged to agree on individual health or treatment goals with their respective doctors of trust. Since 2013, a trend study surveys GK members’ satisfaction every two years. In this contribution we will give interim answers to the following questions: 1) How do GK members assess some key features of GK Integrated Care? 2) What is the level of global patient satisfaction with GK, i.e. in what degree would GK members recommend others to become a member? 3) To which degree do these parameters change over time? Methods : The first survey of the trend study was conducted in 2013, the first follow-up survey in 2015. In 2013, 3.034 GK members were randomly selected and received a standardized questionnaire by mail (in which they were asked to participate in the survey). In 2015, 3.471 members were asked to participate. Participating members sent their completed questionnaire to an independent research institution. Target variables in the questionnaire were: Satisfaction with the doctor of trust (Weisse-Liste-Arzte questionnaire), patient activation (PAM-13-D), health-related quality of life (EQ-5D, EQ-VAS), satisfaction with GK (3 self-developed items), perceived health maintenance and health behaviour (2 self-developed items). In the following we present bivariate analyses of variables indicating patient satisfaction with GK, perceived change of overall care quality, perceived change of health behaviour and health maintenance. Results : The response rates (evaluable response) amounted to 23 % (n=711) in the first survey and to 25 % (n=863) in the first follow-up survey. Among the responders, women and older people were slightly over-represented. In 2013, 39.9 % (95% CI: 36.2 – 44.1) of the respondents felt “somewhat” or “considerably better cared for“ after they had enrolled into GK; in 2015 this proportion amounted to 41.1 % (95% CI: 37,5 - 44,3). When adjusted for age and sex, the results amount to 39.0% (95% CI: 35.4 - 42.7) in 2013 and 41.5% (95% CI: 38.1 - 45.0) in 2015. The proportion of respondents who indicated that they knew now “better how to maintain or improve“ their own health, compared to the time prior to their enrollment, practically remained the same (2013: 57,4%; 2015: 57,7 %; adjusted for age and sex: 56.9% in 2013 vs. 58.1% in 2015). The proportion of those who indicated a more effective health behaviour after their enrollment (2013: 26.1%, 95% CI: 22.8 – 29.8) increased remarkably in the first follow-up survey (2015: 30.6%, 95% CI: 27.3 – 33.7). When adjusted for age and sex, these proportions amount to 25.6% (95% CI: 22.3 - 28.9) in 2013 vs. 30.7% (95% CI: 27.6 - 34.0) in 2015; this increase is statistically significant (p Discussion and conclusion : Members‘ global satisfaction with GK Integrated Care seems to be fairly high: more than 90% would recommend also their friends or relatives to become a member of GK. High global satisfaction values are a very common phenomenon. Therefore the changes of the respective parameters over time seem to provide more valid insights than the levels of these parameters at a given point of time. Our interim results show a largely stable satisfaction with GK Integrated Care over time. This is not surprising after only one follow-up survey. Nonetheless, one parameter displays a noteworthy increase between the first and the second survey: Members’ self-reported health behaviour has significantly improved between 2013 and 2015 (when adjusted for age and sex). This might be attributed to GK’s attempts to activate and empower their members. Biannual surveys will assess future trends of the above-mentioned indicators.

Making sense of changing health landscapes- new demands for research and evaluations

Making sense of changing health landscapes- new demands for research and evaluations

Stakeholders' views on the ethical challenges of pragmatic trials investigating pharmaceutical drugs.

BackgroundWe explored the views of key stakeholders to identify the ethical challenges of pragmatic trials investigating pharmaceutical drugs. A secondary aim was to capture stakeholders’ attitudes towards the implementation of pragmatic trials in the drug development process.MethodsWe conducted semistructured, in-depth interviews among individuals from different key stakeholder groups (academia and independent research institutions, the pharmaceutical industry, regulators, Health Technology Assessment (HTA) agencies and patients’ organizations) through telephone or face-to-face sessions. Interviews were structured around the question “what challenges were experienced or perceived during the design, conduct and/or review of pragmatic trials.” Respondents were additionally asked about their views on implementation of pragmatic trials in the drug development process. Thematic analysis was used to identify the ethically relevant features across data sets.ResultsWe interviewed 34 stakeholders in 25 individual sessions and four group sessions. The four perceived challenges of ethical relevance were: (1) less controlled conditions creating safety concerns, (2) comparison with usual care potentially compromising clinical equipoise, (3) tailored or waivers of informed consent affecting patient autonomy, and (4) minimal interference with “real-world” practice reducing the knowledge value of trial results.ConclusionsWe identified stakeholder concerns regarding risk assessment, use of suboptimal usual care as a comparator, tailoring of informed consent procedures and ensuring the social value of pragmatic trials. These concerns increased when respondents were asked about pragmatic trials conducted before market authorization.Electronic supplementary materialThe online version of this article (doi:10.1186/s13063-016-1546-3) contains supplementary material, which is available to authorized users.