PARTAKE survey of public knowledge and perceptions of clinical research in India.

BACKGROUND: A public that is an informed partner in clinical research is important for ethical, methodological, and operational reasons. There are indications that the public is unaware or misinformed, and not sufficiently engaged in clinical research but studies on the topic are lacking. PARTAKE - Public Awareness of Research for Therapeutic Advancements through Knowledge and Empowerment is a program aimed at increasing public awareness and partnership in clinical research. The PARTAKE Survey is a component of the program. OBJECTIVE: To study public knowledge and perceptions of clinical research. METHODS: A 40-item questionnaire combining multiple-choice and open-ended questions was administered to 175 English- or Hindi-speaking individuals in 8 public locations representing various socioeconomic strata in New Delhi, India. RESULTS: Interviewees were 18-84 old (mean: 39.6, SD ± 16.6), 23.6% female, 68.6% employed, 7.3% illiterate, 26.3% had heard of research, 2.9% had participated and 58.9% expressed willingness to participate in clinical research. The following perceptions were reported (% true/% false/% not aware): 'research benefits society' (94.1%/3.5%/2.3%), 'the government protects against unethical clinical research' (56.7%/26.3%/16.9%), 'research hospitals provide better care' (67.2%/8.7%/23.9%), 'confidentiality is adequately protected' (54.1%/12.3%/33.5%), 'participation in research is voluntary' (85.3%/5.8%/8.7%); 'participants treated like 'guinea pigs'' (20.7%/53.2%/26.0%), and 'compensation for participation is adequate' (24.7%/12.9%/62.3%). CONCLUSIONS: Results suggest the Indian public is aware of some key features of clinical research (e.g., purpose, value, voluntary nature of participation), and supports clinical research in general but is unaware of other key features (e.g., compensation, confidentiality, protection of human participants) and exhibits some distrust in the conduct and reporting of clinical trials. Larger, cross-cultural surveys are required to inform educational programs addressing these issues.

Clinical Research Environment in India: Challenges and Proposed Solutions.

India has compelling need and keen aspirations for indigenous clinical research. Notwithstanding this need and previously reported growth the expected expansion of Indian clinical research has not materialized. We reviewed the scientific literature, lay press reports, and ClinicalTrials.gov data for information and commentary on projections, progress, and impediments associated with clinical trials in India. We also propose targeted solutions to identified challenges. The Indian clinical trial sector grew by (+) 20.3% CAGR (compound annual growth rate) between 2005 and 2010 and contracted by (-) 14.6% CAGR between 2010 and 2013. Phase-1 trials grew by (+) 43.5% CAGR from 2005-2013, phase-2 trials grew by (+) 19.8% CAGR from 2005-2009 and contracted by (-) 12.6% CAGR from 2009-2013, and phase-3 trials grew by (+) 13.0% CAGR from 2005-2010 and contracted by (-) 28.8% CAGR from 2010-2013. This was associated with a slowing of the regulatory approval process, increased media coverage and activist engagement, and accelerated development of regulatory guidelines and recuperative initiatives. We propose the following as potential targets for restorative interventions: Regulatory overhaul (leadership and enforcement of regulations, resolution of ambiguity in regulations, staffing, training, guidelines, and ethical principles [e.g., compensation]).Education and training of research professionals, clinicians, and regulators.Public awareness and empowerment. After a peak in 2009-2010, the clinical research sector in India appears to be experiencing a contraction. There are indications of challenges in regulatory enforcement of guidelines; training of clinical research professionals; and awareness, participation, partnership, and the general image amongst the non-professional media and public. Preventative and corrective principles and interventions are outlined with the goal of realizing the clinical research potential in India.

The Golden Rule Ethic, its Measurement, and Relationships with Well-Being and Prosocial Values Across Four Religions in India

As a psychological principle, the golden rule represents an ethic of universal empathic concern. It is, surprisingly, present in the sacred texts of virtually all religions, and in philosophical works across eras and continents. Building on the literature demonstrating a positive impact of prosocial behavior on well-being, the present study investigates the psychological function of universal empathic concern in Indian Hindus, Christians, Muslims and Sikhs.

I develop a measure of the centrality of the golden rule-based ethic, within an individual’s understanding of his or her religion, that is applicable to all theistic religions. I then explore the consistency of its relationships with psychological well-being and other variables across religious groups.

Results indicate that this construct, named Moral Concern Religious Focus, can be reliably measured in disparate religious groups, and consistently predicts well-being across them. With measures of Intrinsic, Extrinsic and Quest religious orientations in the model, only Moral Concern and religiosity predict well-being. Moral Concern alone mediates the relationship between religiosity and well-being, and explains more variance in well-being than religiosity alone. The relationship between Moral Concern and well-being is mediated by increased preference for prosocial values, more satisfying interpersonal relationships, and greater meaning in life. In addition, across religious groups Moral Concern is associated with better self-reported physical and mental health, and more compassionate attitudes toward oneself and others.

Two additional types of religious focus are identified: Personal Gain, representing the motive to use religion to improve one’s life, and Relationship with God. Personal Gain is found to predict reduced preference for prosocial values, less meaning in life, and lower quality of relationships. It is associated with greater interference of pain and physical or mental health problems with daily activities, and lower self-compassion. Relationship with God is found to be associated primarily with religious variables and greater meaning in life.

I conclude that individual differences in the centrality of the golden rule and its associated ethic of universal empathic concern may play an important role in explaining the variability in associations between religion, prosocial behavior and well-being noted in the literature.

Merely Birds of Passage: Lady Hariot Dufferin's Travel Writings and Medical Work in India, 1884-88

This article examines the travel writings and medical work in India of Lady Hariot Dufferin, Vicereine of India between 1884 and 1888. Lady Dufferin accompanied her husband, the Viceroy Lord Dufferin, through various social and political engagements in India, and carved her own niche in colonial and postcolonial history as a pioneer in the medical training of women in India. The article examines her travel writings on India and explores the nature of her complicity in the Raj, as well as the gendered nature of the separate public role she created for herself in relation to her 'zenana work' in providing medical care for the women of India. The author suggests that, through her work, Lady Dufferin challenges and extends the theoretical paradigms of postcolonialist and feminist critiques of empire.

Addressing diversity and inclusion in the early years in conflict-affected societies: A case study of the Media Initiative for Children – Northern Ireland

This article reports on the development and systematic evaluation of an innovative early years programme aimed at encouraging young children to respect differences within a deeply-divided society that is emerging out of a prolonged period of violent conflict. The programme, the Media Initiative for Children – Northern Ireland, has been the product of a partnership between an US-based organisation (the Peace Initiatives Institute) and NIPPA – The Early Years Organisation and has been supported by academic research and the efforts of a range of voluntary and statutory organisations. It has attempted to encourage young children to value diversity and be more inclusive of those who are different to themselves through the use of short cartoons designed for and broadcast on television as well as specially-prepared curricular materials for use in pre-school settings. To date the programme has been delivered through 200 settings to approximately 3,500 pre-school children across Northern Ireland. This article describes how the programme was developed and implemented as well as the rigorous approach taken to evaluating its effects on young children’s attitudes and awareness. Key lessons from this are identified and discussed in relation to future work in this area.

Organizational and financial transparency in the website of the foundations: an empirical study for Spain

Transparency in nonprofit sector and foundations, as an element to enhance the confidence of stakeholders in the organization, is a fact shown by several studies in recent decades. Transparency can be considered in various fields and through different channels. In our study we focused on the analysis of the organizational and economic transparency of foundations, shown through the voluntary information on their Website. We review the theoretical previous studies published to put to the foundations within the framework of the social economy. This theoretical framework has focused on accountability that make foundations in relation to its social function and its management, especially since the most recent focus of information transparency across the Website.In this theoretical framework was made an index to quantify the voluntary information which is shown on its website. This index has been developed ad hoc for this study and applied to a group of large corporate foundations.With the application of these data are obtained two kind of results, to a descriptive level and to a inferential level.We analyzed the statistical correlation between economic transparency and organizational transparency offered in the Website through quantified variables by a multiple linear regression. This empirical analysis allows us to draw conclusions about the level of transparency offered by these organizations in relation to their organizational and financial information, as well as explain the relation between them.

Use and access to ICT in students of public secondary schools in Chihuahua City, Mexico: inclusion in teaching and digital literacy

This paper addresses the issue of the digital divide in students of public secondary schools at Chihuahua City, Mexico. It seeks to identify potential inequality of opportunities with regards to subjects’ access to information, knowledge and education through the ICT (internet, mobile telephony, broadband and television). The study takes three schools as investigative stage, using the survey as a data collection instrument, identifying patterns of behavior regarding: general knowledge of them, access to computer equipment and internet, and characterization of their use. Other aspects of analysis are the identification of the educational level of parents and access to technology resources available for academic and non-academic purposes in various application areas (home, school and social environment). The proposal concludes, that it is through the recollection of alternatives suggested by the teachers themselves to incorporate ICT for teaching purposes in a systematic and planned fashion, whose greatest reflection manifests in better digital literacy indicators.

Teachers’ understandings of reconciliation and inclusion in four troubled societies.

In this article, the authors examine how teachers in four troubled societies – Israel, Cyprus, Northern Ireland and South Africa – understand and implement reconciliation in light of the increasing diversity of these societies. The authors particularly pay attention to a dialogical encounter between reconciliation and inclusion, as they look for ways to contemplate how each might be of mutual benefit in educational theory and practice. In the first part of the article, the authors give an overview of current thinking on reconciliation and its role in education, and suggest that the notion of inclusiveness can enrich it. The context of the research is then provided by looking briefly at the socio-political and educational settings in which the study was conducted, followed by a discussion of the research methodology. The findings from the study are then presented with the main themes identified as arising across the four research locations. These themes concern understandings of reconciliation and inclusion, student diversity, teachers’ challenges, helping students deal with conflict, and teachers’ development. Finally, whilst acknowledging the exploratory nature of these findings, the authors discuss what policy makers, school leaders and teachers might change about policies and practices for reconciliation education in the four settings studied and, by implication, other comparable settings.