Evaluating health policy and legal responses : how to reduce barriers and improve access to orphan drugs for rare diseases in Canada

Abstract : Rare diseases are debilitating conditions often leading to severe clinical manifestations for affected patients. Orphan drugs have been developed to treat these rare diseases affecting a small number of individuals. Incentives in the legal framework aimed to recoup the research and development cost of orphan drugs for pharmaceutical companies have been implemented in the United States and the European Union. At the present time, Canada is still lacking a legal and policy framework for orphan drugs. Several problems at the federal and provincial levels remain: lack of research funds for rare diseases, discrepancies on orphan drug policies between provinces, difficulties to access and reimburse these high price drugs. Recommendations and measures are proposed, such as a pan-Canadian (national) scientific committee to establish evidence-based guidelines for patients to access orphan drugs uniformly in all provinces with a disease specific registry, a formal agreement for a centralized Canadian public funding reimbursement procedure, and increasing the role of “guardian” for prices by the Patented Medicines Review Board in Canada. These recommendations and measures will be beneficial for the implementation of a policy framework for orphan drugs in Canada.

Beyond Blame: cultural barriers to medical reporting

The paper explores the attitudes of medical physicians towards adverse incident reporting in health care, with particular focus on the inhibiting factors or barriers to participation. It is recognised that there are major barriers to medical reporting, such as the ‘culture of blame’. There are, however, few detailed qualitative accounts of medical culture as it relates to incident reporting. Drawing on a 2-year qualitative case study in the UK, this paper presents data gathered from 28 semi-structured interviews with specialist physicians. The findings suggest that blame certainly inhibits medical reporting, but other cultural issues were also significant. It was commonly accepted by doctors that errors are an ‘inevitable’ and potentially unmanageable feature of medical work and incident reporting was therefore ‘pointless’. It was also found that reporting was discouraged by an anti-bureaucratic sentiment and rejection of excessive administrative duties. Doctors were also apprehensive about the increased potential for managers and non-physicians to engage in the regulation of medical quality through the use of incident data. The paper argues that the promotion of incident reporting must engage with more than the ubiquitous ‘culture of blame’ and instead address the ‘culture of medicine’, especially as it relates to the collegial and professional control of quality.

Results of a feasibility study: barriers and facilitators in implementing the Sherbrooke model in France.

International audience

Examining barriers to internationalisation created by diverse systems and structures in vocational education and training

In a global society, all educational sectors need to recognise internationalism as a core, foundational principle. Whilst most educational sectors are taking up that challenge, vocational education and training (VET) is still being pulled towards the national agenda in terms of its structures and systems, and the policies driving it, disadvantaging those who graduate from VET, those who teach in it, and the businesses and countries that connect with it. This paper poses questions about the future of internationalisation in the sector. It examines whether there is a way to create a VET system that meets its primary point of value, to produce skilled workers for the local labour market, while still benefitting those graduates by providing international skills and knowledge, gained from VET institutions that are international in their outlook. The paper examines some of the key barriers created by systems and structures in VET to internationalisation and suggests that the efforts which have been made to address the problem have had limited success. It suggests that only a model which gives freedom to those with a direct vested interest, students, teachers, trainers and employers, to pursue international co-operation and liaison will have the opportunity to succeed. (DIPF/Orig.)

Schottky barriers to semiconducting polymers

Schottky barrier diodes are made from virtually all semiconducting polymers. Application of Schottky barriers on the development of electronic devices built from semiconducting polymers prompted this research. The article investigated the dc and ac admittance of Schottky barrier which occur at the interface between aluminum and poly(3-methyl thiophene) made ready by electropolymerisation. The experiment revealed that the interfacial layers occurring in polymer Schottky barriers is significant in the response of the controlling device.

Community pharmacists’ understanding, attitudes, practice and perceived barriers related to providing pharmaceutical care: a questionnaire-based survey in Macao

Purpose: To explore the knowledge, attitudes, practice and perceived barriers of community pharmacists regarding provision of pharmaceutical care as well as provide recommendations on how to advance the service during the early stage of development in Macao. Methods: A questionnaire comprising 10 items was used to collect respondents’ demographic information and to evaluate their understanding of pharmaceutical care, attitude towards service provision, current practice and perceived barriers. Descriptive and comparative analysis of the results was conducted. Results: While 95 % of the participating pharmacists agreed that patients’ health was their primary responsibility, only 57 % believed that they can provide better pharmaceutical care in the future. The majority spent most of their work time counselling patients (90 %) and checking prescription (70 %). Only a small portion monitored adverse drug reaction and drug compliance (44 %), engaged in health screening or drug safety promotion (20 %) or maintained patient medication records (4 %). Insufficient communication with physicians (90 %), lack of time (79 %) and lack of physical space at the pharmacy (76 %) were considered the most significant barriers. Conclusion: A suboptimal level of pharmaceutical care is provided by pharmacists in Macao. Considering the barriers identified and integrating other country experiences, establishing an enabling atmosphere using policy and regulatory measures is the fundamental element for advancing pharmaceutical care by community pharmacists.

Barriers to colorectal cancer screening in Asia: A systematic review

Purpose: Colorectal cancer (CRC) is among the top five cancers afflicting both men and women globally. Once predominantly a Western disease, it has begun to rise in Asian countries as well. This systematic review aims to compile and analyze the various barriers towards colorectal cancer screening in Asia, and to determine if the barriers are consistent throughout the continent. Methods: Article Inclusion criteria for based on year of publication from year 2008 till 2015, has been conducted in Asia, and written in English language. A total of 23 studies were included in this review, chosen via primary search of journal websites and databases, and a secondary search through the reference lists of eligible articles. Results: It was found that major barriers of colorectal cancer screening are; poor education/knowledge, negative perceptions towards screening, aversion to test results, financial constraints, time constraints, lack of physicians’ recommendation, limited/difficult access to screening locations, fatalistic beliefs, low perceived risks, language barriers, confidence in traditional medicine/distrust in Western medicine, ignorance and old age. Conclusion: Lack of knowledge/education is the most critical barrier that is linked to a majority of other barriers that can hinder a person from undergoing CRC screening for early prevention, detection and treatment. Majority of these barriers encountered regarding the poor rates of CRC screening are similar across countries in Asia.

Schottky barriers to semiconducting polymers

Schottky barrier diodes are made from virtually all semiconducting polymers. Application of Schottky barriers on the development of electronic devices built from semiconducting polymers prompted this research. The article investigated the dc and ac admittance of Schottky barrier which occur at the interface between aluminum and poly(3-methyl thiophene) made ready by electropolymerisation. The experiment revealed that the interfacial layers occurring in polymer Schottky barriers is significant in the response of the controlling device.

Barriers to health promotion activities in public hospitals

Despite the central role hospitals have in the health care system, relatively few health promotion activities are conducted in Australian public hospitals. This study investigated the types of obstacles that were perceived to inhibit health promotion activities in hospitals. A questionnaire for self-completion was sent to medical superintendents in all public hospitals in Queensland and 112 questionnaires were returned (92.6 per cent response rate). The results indicated that lack of finance, lack of interest by relevant others, and needs (for appropriate programs, training and patient receptivity) were the barriers reported by superintendents. The barriers of 'interest' and 'needs' were related to a lack of written policies in some areas, but not directly to levels of other health promotion activities being conducted in the hospitals. Success in facilitating health promotion programs in hospitals will need to include a change in the environment, in particular the views of medical superintendents. The combination of attitude change and the availability of a motivated person (such as a health promotion officer) to lead the activities may be needed in order to produce an increase in the level of health promotion in public hospitals. Article in Australian and New Zealand Journal of Public Health 20(5):500-4 · November 1996

Barriers to capturing the value of advanced services and digitisation in the road transport industry

Servitization and digitization together provide significant opportunities to raise the performance and profitability of the road transport industry. To date these opportunities are only sparsely captured and the potential economic, social and environmental value is forgone. We set out to investigate the barriers to capturing the value of servitization and digitization in the road transport industry.

Barriers and facilitators to initial and continued attendance at community-based lifestyle programmes among families of overweight and obese children: a systematic review

The success of childhood weight management programmes relies on family engagement. While attendance offers many benefits including the support to make positive lifestyle changes, the majority of families referred to treatment decline. Moreover, for those who do attend, benefits are often compromised by high programme attrition. This systematic review investigated factors influencing attendance at community-based lifestyle programmes among families of over-weight or obese children. A narrative synthesis approach was used to allow for the inclusion of quantitative, qualitative and mixed-method study designs. Thirteen studies met the inclusion criteria. Results suggest that parents provided the impetus for programme initiation, and this was driven largely by a concern for their child's psychological health and wellbeing. More often than not, children went along without any real reason or interest in attending. Over the course of the programme, however, children's positive social experiences such as having fun and making friends fostered the desire to continue. The stigma surrounding excess weight and the denial of the issue amongst some parents presented barriers to enrolment and warrant further study. This study provides practical recommendations to guide future policy makers, programme delivery teams and researchers in developing strategies to boost recruitment and minimise attrition.

Exploring barriers to breastfeeding among chinese mothers living in Madrid, Spain

In Spain, immigrant women have high rates for initiating breastfeeding. In contrast, the case of immigrant Chinese mothers stands out, due to the low rate. In China, breastfeeding has historically been the cultural norm. An ethnographic study was conducted to explore aspects related to the low rate of breastfeeding. Field observations and informal interviews were conducted in two hospitals and a primary care center. Semi-structured interviews were performed with Chinese mothers and health workers. Among Spanish health workers, there is a belief that Chinese women do not breastfeed due to cultural reasons. The rapid return to work and the popular phenomenon of sending babies back to China for grandparents to raise constitute barriers for breastfeeding. Although in China breastfeeding is common practice, in Madrid the prioritization of productivity over reproduction and the existence of the so-called “satellite babies” and transnational maternity make the establishment and maintenance of breastfeeding difficult.

Iowa's Barriers to Prenatal Care Project: 2-14 Data Summary, July 2015

The findings in this summary are based on the Iowa Barriers to Prenatal Care project. Ongoing since 1991, the purpose of this project is to obtain brief, accurate information about women delivering babies in Iowa hospitals. Specifically, the project seeks to learn about women’s experiences getting prenatal or delivery care during their current pregnancy. Other information is included which may be pertinent to health planners or those concerned with the systematic development of health care services. This project is a cooperative venture of all of Iowa’s maternity hospitals, the University of Northern Iowa Center for Social and Behavioral Research, and the Iowa Department of Public Health. The Robert Wood Johnson Foundation funded the first three years of this project. The current funding is provided by the Iowa Department of Public Health. The Director is Dr. Mary Losch, University of Northern Iowa Center for Social and Behavioral Research. The Coordinator for the project is Rodney Muilenburg. The questionnaire is distributed to nearly ninety maternity hospitals across the state of Iowa. Nursing staff or those responsible for obtaining birth certificate information in the obstetrics unit are responsible for approaching all birth mothers prior to dismissal and requesting their participation in the study. The questionnaire takes approximately ten minutes to complete. Completed questionnaires are returned to the University of Northern Iowa Center for Social and Behavioral Research for data entry and analysis. Returns are made monthly, weekly, or biweekly depending on the number of births per week in a given hospital. Except in the case of a mother who is too ill to complete the questionnaire, all mothers are eligible to be recruited for participation. The present yearly report includes an analysis of large Iowa cities, African American mothers, and a trend analysis of the last ten years. Also presented in this report is a frequency analysis of all variables included in the 2012 questionnaire. Unless otherwise noted, all entries reflect percentages. Please note that because percentages were rounded, total values may not equal 100%. Data presented are based upon 2012 questionnaires received to date (n = 23,674). All analyses reflect unweighted percentages of those responding.

How did the AD 1755 tsunami impact on sand barriers across the southern coast of Portugal?

Tsunamis are highly energetic events that may destructively impact the coast. Resolving the degree of coastal resilience to tsunamis is extremely difficult and sometimes impossible. In part, our understanding is constrained by the limited number of contemporaneous examples and by the high dynamism of coastal systems. In fact, longterm changes of coastal systems can mask the evidence of past tsunamis, leaving us a short or incomplete sedimentary archive. Here, we present a multidisciplinary approach involving sedimentological, geomorphological and geophysical analyses and numerical modelling of the AD 1755 tsunami flood on a coastal segment located within the southern coast of Portugal. In particular, the work focuses on deciphering the impact of the tsunami waves over a coastal sand barrier enclosing two lowlands largely inundated by the tsunami flood. Erosional features documented by geophysical data were assigned to the AD 1755 eventwith support of sedimentological and age estimation results. Furthermore, these features allowed the calibration of the simulation settings to reconstruct the local conditions and establish the run-up range of the AD 1755 tsunami when it hit this coast (6– 8 m above mean sea level). Our work highlights the usefulness of erosional imprints preserved in the sediment record to interpret the impact of the extreme events on sand barriers

Analysis ot the road barriers maintenance: the Bologna Case Study

This thesis deals with the topic of Road Safety when maintaining its road elements. The aim of the work is the prioritization of maintenance for each barrier that depends on some factors that are related to the topography of the site, deformations, degradation of the composing elements, and the compliance of the barrier installation with the original situation. Based on these components a final coefficient by which the maintenance priority was highlighted, calculated, and associated to each barrier. For easy study and visualization, information was uploaded and processed in a GIS environment, in order to create analyses and choropleth maps. Analyses were exploited by using free and open-source GIS software, namely QGIS. Information on the barriers' features was registered with both on-site and online (i.e., web mapping providers) inspections. With regards to the on-site inspections, a complete geotagged photos database was created, in order to improve the survey. GIS potentialities were fully exploited by applying some geoprocessing tools which allowed deep analyses.