BackgroundResearch Ethics Boards, or Institutional Review Boards, protect the safety and welfare of human research participants. These bodies are responsible for providing an independent evaluation of proposed research studies, ultimately ensuring that the research does not proceed unless standards and regulations are met.Main bodyConcurrent with the growing volume of human participant research, the workload and responsibilities of Research Ethics Boards (REBs) have continued to increase. Dissatisfaction with the review process, particularly the time interval from submission to decision, is common within (...) the research community, but there has been little systematic effort to examine REB processes that may contribute to inefficiencies. We offer a model illustrating REB workflow, stakeholders, and accountabilities.ConclusionBetter understanding of the components of the research ethics review will allow performance targets to be set, problems identified, and solutions developed, ultimately improving the process. (shrink)

Background: Compassion fatigue is recognized as impacting the health and effectiveness of healthcare providers, and consequently, patient care. Compassion fatigue is distinct from “burnout.” Reliable measurement tools, such as the Professional Quality of Life scale, have been developed to measure the prevalence, and predict risk of compassion fatigue. This study reviews the prevalence of compassion fatigue among healthcare practitioners, and relationships to demographic variables. Methods: A systematic review was conducted using key words in MEDLINE, PubMed, and Ovid databases. Data were (...) extracted from a total of 71 articles meeting inclusion criteria, from studies measuring compassion fatigue in healthcare providers using a validated instrument. Quantitative and qualitative data were extracted and compiled by three independent reviewers into an evidence table that included basic study characteristics, study strength and quality determination, measurements of compassion fatigue, and general findings. Meta-analysis, where data allowed, was stratified by Professional Quality of Life version, heterogeneity was quantified, and pooled means were reported with 95% confidence interval. A table of major study characteristics and results was created. Ethical consideration: This paper contains no primary data obtained directly from research participants. Data obtained from previously published resources have been acknowledged within references. Psychological distress, particularly compassion fatigue, can be insidious, no health profession is immune, and may significantly impact the ability to provide care. Results: A total of 71 studies were included. Compassion fatigue was reported across all practitioner groups studied. Relationships to most demographic variables such as years of experience and specialty were either not statistically significant or unclear. Variability in reporting of Professional Quality of Life results was found. Interpretation: Compassion fatigue exists across diverse practitioner groups. Prevalence is highly variable, and its relationship with demographic, personal, and/or professional variables is inconsistent. Questions are raised about how to mitigate compassion fatigue. (shrink)

BackgroundPersonal health information and biospecimens are valuable research resources essential for the advancement of medicine and protected by national standards and provincial statutes. Research ethics and privacy standards attempt to balance individual interests with societal interests. However these standards may not reflect public opinion or preferences. The purpose of this study was to assess the opinions and preferences of patients with kidney disease about the use of their health information and biospecimens for medical research.MethodsA 45-item survey was distributed to a (...) convenience sample of patients at an outpatient clinic in a large urban centre. The survey briefly addressed sociodemographic and illness characteristics. Opinions were sought on the research use of health information and biospecimens including consent preferences.ResultsTwo hundred eleven of 400 distributed surveys were completed. Respondents were generally supportive of medical research and trusting of researchers. Many respondents supported the use of their information and biospecimens for health research and also preferred consent be sought for use of health information and biospecimens. Some supported the use of their information and biospecimens for research without consent. There were significant differences in the opinions people offered regarding the research use of biospecimens compared to health information. Some respondent perspectives about consent were at odds with current regulatory and legal standards.ConclusionsClinical health data and biospecimens are valuable research resources, critical to the advancement of medicine. Use of these data for research requires balancing respect for individual autonomy, privacy and the societal interest in the greater good. Incongruence between some respondent perspectives and the regulatory standards suggest both a need for public education and review of legislation to increase understanding and ensure the public’s trust is maintained. (shrink)

Ethics review of research involving humans has become something of an institution in recent years. It is intended to protect participants from harm and, to that end, follows rigorous standards. Giv...