scholarly journals To CAG or not to CAG? Difficulties in determining submission to the Confidentiality Advisory Group: a commentary

2020 ◽  
pp. 174701612092006
Author(s):  
V Ranieri ◽  
H Stynes ◽  
E Kennedy
Keyword(s):  
Informed Consent ◽  
Health Research ◽  
Local Information ◽  
Advisory Group ◽  
Primary Role ◽  
The Public ◽  
Confidential Data ◽  
Information Governance ◽  
Group A

The Confidentiality Advisory Group (CAG) is a specialised body that advises the Health Research Authority (HRA) and the Secretary of State for Health on requests for access to confidential information, in the absence of informed consent from its owners. Its primary role is to oversee the safe use of such information and to counsel the governing bodies mentioned above as to whether such use is appropriate or inappropriate. Researchers who seek access to England or Wales-based confidential data, for medical purposes that are in the interest of the public, are typically required to submit an application to this body. However, it is not always clear to researchers whether requests for access to patient data fit within the remit of the CAG or a Trust’s local information governance team. This commentary will, therefore, explore the role of the CAG and reflect on how best to support researchers with this question.

scholarly journals A design-led framework for engaged research: Using a design approach to understand and place the public at the core of health and social care

2021 ◽  
Vol 69 (3) ◽  
pp. 1-18
Author(s):  
Mary Galvin ◽  
Avril Kennan ◽  
Éidín Ní Shé
Keyword(s):  
Health Research ◽  
Social Care ◽  
Social Research ◽  
Research Process ◽  
The Public ◽  
Umbrella Organisation ◽  
Health And Social Care ◽  
Academic Partner ◽  
New Policies

Abstract This paper offers a multi-perspective approach on the role of engaged research in health and social care. Each of the authors focuses on their individual experiences of this domain, from the perspective of an academic partner of the Health Research Board’s PPI Ignite programme, a CEO of an umbrella organisation for health research charities and a researcher in design innovation, focusing on health research. The paper outlines the values which underpin public and patient involvement, as well as examples of its application as engaged research. It details how organisations like Health Research Charities Ireland support and enable engaged research within health and social research and policy. This paper offers a framework for facilitating dialogue and response across all stakeholders in the engaged research process, illustrating the importance of engaged research and how we can further our understanding and application of it within health and social care policy by adopting a design-led approach. We argue that a design-led approach can both facilitate engaged research as well as support policymakers in the design of new policies and practices.

scholarly journals Engaging patients and the public in Health Research: experiences, perceptions and training needs among Manitoba health researchers

2019 ◽  
Vol 5 (1) ◽  
Author(s):  
Leah K. Crockett ◽  
Carolyn Shimmin ◽  
Kristy D. M. Wittmeier ◽  
Kathryn M. Sibley
Keyword(s):  
Public Engagement ◽  
Health Research ◽  
Training Needs ◽  
Future Research ◽  
Advisory Group ◽  
Cross Sectional ◽  
The Public ◽  
Patient And Public Engagement ◽  
Manitoba Health ◽  
And Training

Abstract Background The significance of patient and public engagement is increasingly recognized in health research, demonstrated by explicit requirements for patient and public engagement by funding agencies and journals. Such requirements have charged health researchers with leading patient and public engagement efforts, but evidence suggests that this practice is still evolving. Little research has explored the experiences and training needs of health researchers. This study aimed to establish a baseline understanding of the experiences, perceptions and training needs of health researchers in engaging patients and the public in health research in the context of Manitoba. Methods A cross-sectional 50-item questionnaire was distributed using a multi-phase purposive sampling strategy targeting health researchers in Manitoba, Canada. Data was summarized using frequencies, percentages and analyzed using chi-square testing. A local patient engagement advisory group was consulted at the interpretation stage of the study to obtain feedback and input on the findings and their implications. Results Responses from 53 health researchers were included. Most participants had engaged patients and the public in their own research (n = 43, 81.1%). Those who had engaged reported having some (n = 19, 44.2%), extensive (n = 14, 32.6%) or a little (n = 10, 23.3%) experience with this process. Most engaged at the levels of inform, consult or involve (81.3, 64.6 and 54.2% respectively), while fewer engaged at the collaborate (37.5%) or patient-directed levels (12.5%). Recruitment occurred using a number of approaches and engagement occurred at various phases of the research process, while main groups engaged were patients (n = 38, 82.6%) and families/caregivers (n = 25, 54.4%). Barriers to engaging patients and the public in health research included funding, time, compensation, logistics, recruitment, motivation at both the patient and researcher level, and skills of researchers to engage. Researchers reported an overwhelming need and interest for supports, funding and training to effectively engage patients and the public in health research. Consultation with the patient advisory group provided further insight on study findings and areas for future research. Conclusions Participating Manitoba health researchers engaged patients and the public in health research at multiple, but typically lower levels of involvement. Findings highlight the barriers to effective, authentic and meaningful patient and public engagement and support the need for targeted training, supports, funding and time for health researchers.

SWINE FLU FAILURE

PEDIATRICS ◽  
1978 ◽  
Vol 61 (5) ◽  
pp. 800-800
Author(s):  
L. K. Altman ◽  
Keyword(s):  
Informed Consent ◽  
Preventive Medicine ◽  
Health Program ◽  
Public Awareness ◽  
Swine Flu ◽  
Public Health Program ◽  
The Public ◽  
Moral Necessity ◽  
The Individual

Mass preventive medicine programs clearly depend on public awareness. In an era when informed consent is not only a moral necessity but a legal right, preventive medicine proponents now recognize they cannot proceed unless they recognize the role of publicity in educating the public—not only about the merits but the necessary dangers in a public health program. Any measure that is taken to prevent an illness, or potential complication of an existing illness, involves risk which must be weighed against the threat of what is being prevented. The experts say they are the only ones who can make the technical decisions and recommendations, but the emphasis on informed consent puts increased responsibility on the individual to accept or reject that advice. The swine flu immunization decision, like many other immunization policies, was made by a small group of selected "experts." Critics of the decision said they had little or no opportunity to voice opposition. Yet when decisions affecting the medical care of every person and every doctor's practice are made centrally, clearly the process needs modification to allow recognition of those with dissenting views or alternative plans. Otherwise, many suspect, there will be less support from those who are asked to take part in mass preventive medicine programs.

AlphaVBeta3 (αvβ3) Integrin Drives the Osteoclastogenesis through a Osteoclast-Like Functional Differentiation of Myeloma Cells.

Blood ◽  
2007 ◽  
Vol 110 (11) ◽  
pp. 814-814 ◽  
Author(s):  
Marco Tucci ◽  
Lucia Lombardi ◽  
Steve Reshkin ◽  
Rosa A. Cardone ◽  
Silvestris Franco
Keyword(s):  
Bone Erosion ◽  
Bone Lesions ◽  
Αvβ3 Integrin ◽  
Primary Role ◽  
Myeloma Cells ◽  
Group A ◽  
Group B ◽  
Rpmi 8226

Abstract Accelerated osteoclastogenesis is the major event promoting the skeletal impairment in multiple myeloma (MM). Osteoclasts (OC) are directly activated by myeloma cells (MC), although these cells themselves may apparently undergo to OC-like morphologic transformation and produce bone erosion in vitro. Since OCs exert their function and promote osteoclastogenesis through activation of several adhesion molecules, including avb3, we investigated the role of this integrin expressed by MCs in their OC-like activity in vitro. Bone marrow MCs were purified from eight patients with severe skeletal disease (group A) and from two patients without bone lesions (group B). U266 and RPMI-8226 MC lines were the controls. Semi-nested PCR assessed the CDR3 immunoglobulin (Ig) gene rearrangement, whereas OC markers including TRAcP, cathepsin-k, calcitonin-receptor, carbonic anhydrase and vATPase were evaluated by RT-PCR. The cytoskeletal rearrangement of F-actin was analyzed by immunofluorescence. av and b3 expression on MCs was evaluated by flow-cytometry, whereas bone erosion on calcium phosphate discs and number of pits was measured by dedicated software. The effect of avb3 stimulation on the activation of osteoclastogenic function was investigated by exploring the phosphorilation of transcriptional kinases and downstream molecules, as ERK1/2 and cFos, respectively. The primary role of avb3 in OC-like functional transdifferentiation was explored in MCs by siRNA silencing for both chains. Ontogenetic derivation from the B-cell lineage was confirmed by the monoclonal CDR3 rearrangement, CD138/CD38 and Pax-5 expression. Cells from patients of group A expressed OC markers, in contrast with those of group B or U266 and RPMI-8226. Formation of the F-actin ring confirmed the differentiation of MCs toward the OC-like phenotype. Cells from group A expressed av and b3 (80±7% and 75±9%) similarly to U266 and RPMI-8226 (>90% in both instances), whereas a minimal expression was demonstrated in group B (av:6±2%; b3:8±3%). avb3+ cells produced a high number of erosive pits, at variance from avb3− cells (35±8 vs. 4±1 pits/cm2 ). The highest phosphorilation of ERK1/2 and expression of cFos was revealed in patients of group A as compared to B (840±110 OD and 905±210 OD vs. 270±35 OD and 315±80 OD, p<0.0001 in both instances). Finally, the silencing of av and/or b3 chain inhibited the erosion by avb3+ cells, resulting in a reduced number of pits (7±2 pits/cm2) similar to the pattern obtained with avb3− cells. Similarly, an inhibition of both ERK1/2 and cFos was demonstrated in silenced cells from group A with values similar to those of group B. Since avb3 drives both adhesion of Ocs to extracellular matrix and activation of osteoclastogenesis, it is conceivable that avb3+ MCs may functionally transdifferentiate to OCs in response to integrin activation induced by the contact with stromal cells within the marrow environment, thus resulting in a typical OC-like behaviour. In addition, our data suggest that MCs induce this effect by avb3, since its silencing reduces the OC-like activity in vitro.

Predictive Genetic Testing,Uncertainty, and Informed Consent

2009 ◽  
pp. 474-495
Author(s):  
Eduardo A. Rueda
Keyword(s):  
Genetic Testing ◽  
Informed Consent ◽  
Informed Consent Process ◽  
Predictive Genetic Testing ◽  
Three Dimensions ◽  
Consent Process ◽  
The Public ◽  
The Individual

This chapter focuses on showing legitimate ways for coping with uncertainties within the informed consent process of predictive genetic testing. It begins by indicating how uncertainty should be theoretically understood. Then, it describes three dimensions of uncertainty with regard to both the role of genes in pathogenesis and the benefit to patients of undergoing predictive genetic testing. Subsequently, the ways by which institutions tame these uncertainties are explained. Since viewing genes as exceptional informational entities plays an important role in taming uncertainties, it explains why this conception should be abandoned. Then, it discusses how institutional taming of uncertainty becomes a source of paternalism. What is stressed is that in order to avoid paternalism and ensure transparency within the informed consent process, open-to-uncertainty mechanisms should be implemented before the public and the individual. How patients should deal with potential implications of testing for their relatives is also considered.

scholarly journals The Social Functionality of Humor in Group-Based Research

2018 ◽  
Vol 29 (3) ◽  
pp. 431-444 ◽  
Author(s):  
Rebecca Hewer ◽  
Katherine Smith ◽  
Gillian Fergie
Keyword(s):  
Health Policy ◽  
Health Research ◽  
Power Dynamics ◽  
Positive Role ◽  
Policy Issues ◽  
The Public ◽  
Qualitative Health Research ◽  
The Social ◽  
Facilitative Role

Citizens’ juries provide deliberative fora within which members of the public can debate complex policy issues. In this article, we reflect on our experience of undertaking three citizens’ juries addressing health inequalities, to explore the positive and facilitative role that humor can play within group-based research focusing on sensitive health policy issues. We demonstrate how both participants and researchers engaged in the production of humor in ways which troubled prevailing power dynamics and facilitated positive relationships. We conclude by recommending that researchers, particularly health policy researchers and those pursuing the kind of lengthy group-based fora associated with deliberative research, consider the positive role humor can play when engaged reflexively. In so doing, we make a major contribution to extant literature on both deliberative fora (which is yet to consider humor’s facilitative capacities) and the role of humor in qualitative (health) research (which rarely explores researcher complicity in humor production).

The role of the public in the French nuclear sector: the case of “Local Information Commissions” (CLIs) for nuclear activities

2018 ◽  
Vol 53 (2) ◽  
pp. 87-93 ◽  
Author(s):  
M. Kerveillant
Keyword(s):  
High Risk ◽  
Technical Aspect ◽  
Local Information ◽  
Nuclear Safety ◽  
Alternative View ◽  
The Public ◽  
Generalized Other ◽  
The People ◽  
Over Time

This dissertation seeks to understand what role the public plays, through CLIs (Commission of Local Information), in the governance of nuclear safety. It presents an in-depth longitudinal case from the French nuclear sector and proposes a pragmatist framework to study the construction and maintenance of the public over time. The author analyzes the circumstances in which the people potentially impacted by nuclear activities can become active participants in the governance of such high-risk industries, and how they can organize themselves and build a common voice. The dissertation establishes that when CLIs play both the role of a “Generalized Other” representing the public’s voice, and the role of a civil provider of second opinions, able to discuss the complex subjects at stake, they become a powerful and legitimate stakeholder in nuclear safety governance. In such circumstances, CLIs should be able to conduct investigations that are both commonsensical and technical. These characteristics would make CLI-led investigations all the more rich and useful for the governance of nuclear safety. The technical aspect (with the help of experts and specialists) would reinforce the legitimacy of such investigations in the eyes of nuclear actors, and their commonsensical or “layman’s view” aspect would provide an alternative view of nuclear questions in the safety debate, potentially leading to creative ways of addressing the issues and situations at stake.

scholarly journals Pedagogia Universitária e Prática Didática: um Relato de Experiência

2019 ◽  
Vol 20 (1) ◽  
pp. 118
Author(s):  
Samuel José Amaral De Jesus
Keyword(s):  
Higher Education ◽  
Pedagogical Practices ◽  
Primary Role ◽  
Direct Connection ◽  
Construction Process ◽  
Teaching Innovation ◽  
The Public ◽  
Public Evaluation ◽  
Methodological Procedures

A Universidade é um espaço que alia conhecimentos, competências e atitudes, em uma conexão direta com a identidade do sujeito. Nesta, o docente tem o papel primordial de mediar a sistematização de conhecimentos, permitindo assim a sua troca e contribuindo para um aprendizado significativo. No entanto, este contexto é marcado por diversas barreiras, principalmente, no que diz respeito às práticas pedagógicas. Com o objetivo de discutir o processo de construção da didática universitária e a importância da inovação, este relato de experiência foi construído a partir de uma microaula ministrada durante o componente curricular Didática do Ensino Superior. Para tal, foi realizada a elaboração da aula, que ocorreu por meio da construção de um plano específico e orientado, o qual culminou na explanação do conteúdo, com práticas condizentes ao tema e o emprego de elementos inovadores. Após a apresentação, foi aberto um espaço para a avaliação do público, que se realizou pela exposição de críticas (ou de análises) sobre os diversos pontos observados. Em suma, a microaula foi uma oportunidade para vivenciar como se planeja e atua no Ensino Superior. Por outro lado, também contribuiu de uma forma significativa para a construção enquanto docente, em relação aos procedimentos metodológicos. Palavras-chave: Docência. Inovação. Didática. AbstractThe university is a space that combines knowledge, skills and attitudes, in a direct connection with the subject’s  identity . In it, the professor has the primary role of mediating the  knowledge systematization, thus allowing its exchange and contributing to meaningful learning. However, this context is marked by several barriers, especially regarding pedagogical practices. With the objective of discussing the construction process of university didactics and the importance of innovation, this experience report was constructed from a micro class taught during the curricular component Didactics of Higher Education. For this, the lesson was elaborated, which was done by means of the construction of a specific and oriented plan, which culminated in the content explanation, with practices consistent with the theme and the use of innovative elements. After the presentation, a space was opened for the public evaluation, which was the exposure of criticism (or analysis) on the various observed points. In short, the  micro class was an opportunity to experience how to plan and act in higher education. On the other hand, it also contributed significantly to the construction as a professor, in relation to the methodological procedures. Keywords: Teaching. Innovation. Didactics. 

Sign in / Sign up

Export Citation Format

Share Document