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.

Good Practices in the field of Health Promotion and Chronic Disease Prevention

Background; Approach and Concept; Methods (Country reviews; Definition of Good Practice Criteria; Identification of Good Practice Examples; Identification of transferable practices / elements); Outputs

Joint Action CHRODIS Work Package 5 - Good practices in the field of health promotion and chronic disease prevention across the life cycle: outcomes at a glance

Associated Partners in the Work Package 5: National Health Institute Doutor Ricardo Jorge (INSA), Portugal (Luciana Costa)

Health, hygiene and biosecurity: tribal knowledge claims in the UK poultry industry

Since 1997 the world has been facing the threat of a human influenza pandemic that may be caused by an avian virus and the poultry industry around the globe has been grappling with the highly pathogenic strain of avian influenza H5N1, or in more informal terms bird flu. The UK poultry industry has lived with and through this threat and its consequences since 2005. This study investigates knowledge claims about health, hygiene and biosecurity as tools to ward off the threat from this virus. It takes a semi-ethnographic and discourse analytic approach to analyse a small corpus of semi-structured interviews carried out in the wake of one of the most publicised outbreaks of H5N1 in Suffolk in 2007. It reveals that claims about what best to do to protect flocks against the risk of disease are divided along lines imposed on the one hand by the structure of the industry and on the other by more 'tribal' lines drawn by knowledge and belief systems about purity and dirt, health and hygiene.

Chinese seafarers on foreign ships: Employment and welfare issues

Abstract not available

Children with Special Health Care Needs: Comparison of the Effects of Home Care Setting, Prescribed Pediatric Extended Care Setting, and Long-Term Care Setting on Child and Family Health Outcomes and Health Care Service Use

Technological advances during the past 30 years have dramatically improved survival rates for children with life-threatening conditions (preterm births, congenital anomalies, disease, or injury) resulting in children with special health care needs (CSHCN), children who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who require health and related services beyond that required by children generally. There are approximately 10.2 million of these children in the United States or one in five households with a child with special health care needs. Care for these children is limited to home care, medical day care (Prescribed Pediatric Extended Care; P-PEC) or a long term care (LTC) facility. There is very limited research examining health outcomes of CSHCN and their families. The purpose of this research was to compare the effects of home care settings, P-PEC settings, and LTC settings on child health and functioning, family health and function, and health care service use of families with CSHCN. Eighty four CSHCN ages 2 to 21 years having a medically fragile or complex medical condition that required continual monitoring were enrolled with their parents/guardians. Interviews were conducted monthly for five months using the PedsQL TM Generic Core Module for child health and functioning, PedsQL TM Family Impact Module for family health and functioning, and Access to Care from the NS-CSHCN survey for health care services. Descriptive statistics, chi square, and ANCOVA were conducted to determine differences across care settings. Children in the P-PEC settings had a highest health care quality of life (HRQL) overall including physical and psychosocial functioning. Parents/guardians with CSHCN in LTC had the highest HRQL including having time and energy for a social life and employment. Parents/guardians with CSHCN in home care settings had the poorest HRQL including physical and psychosocial functioning with cognitive difficulties, difficulties with worry, communication, and daily activities. They had the fewest hours of employment and the most hours providing direct care for their children. Overall health care service use was the same across the care settings.

Health professionals’ and patients’ perspectives on pelvic floor muscle training adherence : 2011 ICS State-of-the-Science Seminar research paper IV of IV

Aims There is scant information on pelvic floor muscle training (PFMT) adherence barriers and facilitators. A web-based survey was conducted (1) to investigate whether responses from health professionals and the public broadly reflected findings in the literature, (2) if responses differed between the two groups, and (3) to identify new research directions. Methods Health professional and public surveys were posted on the ICS website. PFMT adherence barriers and facilitators were divided into four categories: physical/condition, patient, therapy, and social-economic. Responses were analyzed using descriptive statistics from quantitative data and thematic data analysis for qualitative data. Results Five hundred and fifteen health professionals and 51 public respondents participated. Both cohorts felt “patient-related factors” constituted the most important adherence barrier, but differed in their rankings of short- and long-term barriers. Health professionals rated “patient-related” and the public “therapy-related” factors as the most important adherence facilitator. Both ranked “perception of PFMT benefit” as the most important long-term facilitator. Contrary to published findings, symptom severity was not ranked highly. Neither cohort felt the barriers nor facilitators differed according to PFM condition (urinary/faecal incontinence, pelvic organ prolapse, pelvic pain); however, a large number of health professionals felt differences existed across age, gender, and ethnicity. Half of respondents in both cohorts felt research barriers and facilitators differed from those in clinical practice. Conclusions An emphasis on “patient-related” factors, ahead of “condition-specific” and “therapy-related,” affecting PFMT adherence barriers was evident. Health professionals need to be aware of the importance of long-term patient perception of PFMT benefits and consider enabling strategies.

Youth-Physical Activity Towards Health: evidence and background to the development of the Y-PATH physical activity intervention for adolescents

Background: Despite known benefits of regular physical activity for health and well-being, many studies suggest that levels of physical activity in young people are low, and decline dramatically during adolescence. The purpose of the current research was to gather data on adolescent youth in order to inform the development of a targeted physical activity intervention. Methods: Cross-sectional data on physical activity levels (using self report and accelerometry), psychological correlates of physical activity, anthropometic characteristics, and the fundamental movement skill proficiency of 256 youth (53% male, 12.40 ± 0.51 years) were collected. A subsample (n = 59) participated in focus group interviews to explore their perceptions of health and identify barriers and motivators to participation in physical activity. Results: Findings indicate that the majority of youth (67%) were not accumulating the minimum 60 minutes of physical activity recommended daily for health, and that 99.5% did not achieve the fundamental movement skill proficiency expected for their age. Body mass index data showed that 25% of youth were classified as overweight or obese. Self-efficacy and physical activity attitude scores were significantly different (p < 0.05) between low, moderate and high active participants. Active and inactive youth reported differences in their perceived understanding of health and their barriers to physical activity participation, with active youth relating nutrition, exercise, energy and sports with the definition of ‘being healthy’, and inactive youth attributing primarily nutritional concepts to ‘being healthy’. Conclusions: Data show a need for targeting low levels of physical activity in youth through addressing poor health related activity knowledge and low fundamental movement skill proficiency. The Y-PATH intervention was developed in accordance with the present study findings; details of the intervention format are presented.

Health professionals’ and patients’ perspectives on pelvic floor muscle training adherence : 2011 ICS State-of-the-Science Seminar research paper IV of IV

Aims There is scant information on pelvic floor muscle training (PFMT) adherence barriers and facilitators. A web-based survey was conducted (1) to investigate whether responses from health professionals and the public broadly reflected findings in the literature, (2) if responses differed between the two groups, and (3) to identify new research directions. Methods Health professional and public surveys were posted on the ICS website. PFMT adherence barriers and facilitators were divided into four categories: physical/condition, patient, therapy, and social-economic. Responses were analyzed using descriptive statistics from quantitative data and thematic data analysis for qualitative data. Results Five hundred and fifteen health professionals and 51 public respondents participated. Both cohorts felt “patient-related factors” constituted the most important adherence barrier, but differed in their rankings of short- and long-term barriers. Health professionals rated “patient-related” and the public “therapy-related” factors as the most important adherence facilitator. Both ranked “perception of PFMT benefit” as the most important long-term facilitator. Contrary to published findings, symptom severity was not ranked highly. Neither cohort felt the barriers nor facilitators differed according to PFM condition (urinary/faecal incontinence, pelvic organ prolapse, pelvic pain); however, a large number of health professionals felt differences existed across age, gender, and ethnicity. Half of respondents in both cohorts felt research barriers and facilitators differed from those in clinical practice. Conclusions An emphasis on “patient-related” factors, ahead of “condition-specific” and “therapy-related,” affecting PFMT adherence barriers was evident. Health professionals need to be aware of the importance of long-term patient perception of PFMT benefits and consider enabling strategies.

Iowa Homeland Security and Emergency Management, Enhanced 911 Status Report, January 15, 2014

The Iowa Homeland Security and Emergency Management Department administers the E911 Program per Code of Iowa, Chapter 34A to protect the health, safety, and welfare of the people of Iowa. Iowa has 115 Public Safety Answering Points across 99 counties that handle both landline and wireless 911 calls for the citizens of Iowa.Enhanced 911 (E911) means a service which provides the user of a public telephone system the ability to reach a public safety answering point (PSAP) by dialing the digits 911.