scholarly journals A Tripartite Knowledge Translation Program: Innovative Patient-Centered Approach to Clinical Research Participation for Individuals with Multiple Sclerosis

2021 ◽  
Vol 2021 ◽  
pp. 1-7
Author(s):  
Aman Saini ◽  
Colleen Cochran ◽  
Audrey Zucker-Levin ◽  
Sarah J. Donkers ◽  
Pawan Kumar ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Knowledge Translation ◽  
Clinical Research ◽  
Research Program ◽  
Research Participation ◽  
Research Process ◽  
Patient Centered ◽  
Research Activities ◽  
Strongly Agree ◽  
Experiential Research

Background. Knowledge translation (KT) models that represent an individual’s perspective are a sign of effective KT. Some common challenges in KT include participant engagement, organization of the team, and time demands of the participants. We implemented a unique tripartite KT program to (1) share current research, (2) inform persons living with multiple sclerosis (pwMS) about the clinical research process, and (3) invite pwMS to immediately participate in clinical research. The primary aim was to determine participants’ perspectives on the value and acceptability of an experiential research program offered at a patient and family educational conference. Methods. A team of researchers identified factors that would impact the logistics of hosting an experiential research program at a conference and designed a unique tripartite KT program. The local multiple sclerosis (MS) society was engaged to select an appropriate location and invite stakeholders to the conference. A survey to determine participants’ perspectives on the value and acceptability of the experiential research program was developed and analyzed. Results. 65 pwMS attended the conference, and 44 (67.7%) participated in the on-site experiential research program. 72.7% of the participants completed the survey, of which 93.8% stated that they strongly agree or agree with the following statements: “Did you feel like participating in research today was a valuable experience to you?” and “Did you feel like you were contributing to MS research?” 100% of the participants agreed or strongly agreed when asked “would you like to see more research activities taking place at these kinds of events?” Conclusions. This paper describes the logistics and challenges of conducting an experiential KT program, which proved to be rewarding for pwMS. The majority of pwMS attending the conference agreed to participate in the on-site experiential research program and an overwhelming majority of participants felt the experience was valuable.

Collaborative strategies for knowledge translation: the African-German CEBHA+ research network

2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
K Sell ◽  
L M Pfadenhauer ◽  
N Jessani ◽  
B M Schmidt ◽  
N Levitt ◽  
...  
Keyword(s):  
Knowledge Translation ◽  
Early Stage ◽  
Research Process ◽  
Research Network ◽  
Policy And Practice ◽  
Programme Theory ◽  
Ongoing Research ◽  
Research Activities ◽  
Country Specific ◽  
Integrated Knowledge

Abstract Background The Collaboration for Evidence-based Healthcare and Public Health in Africa (CEBHA+) is an NCD research consortium that seeks to engage policy-makers and practitioners throughout the research process in order to build lasting relationships, enhance evidence uptake and build long-term capacity among partner institutions in Ethiopia, Malawi, Rwanda, South Africa and Uganda. This integrated knowledge translation (IKT) approach includes the formal development and implementation of country-specific engagement strategies. Methods An early-stage evaluation is taking place in Mid-2020. Online surveys and qualitative interviews with researchers and policy-and-practice partners will inform adaptation of country-specific strategies, advance the initial programme theory and contribute to the science of IKT. Results We present three pertinent observations based on the development and implementation of an overarching CEBHA+ IKT approach and five country-specific strategies over the last two years: Despite being informed by an overarching IKT programme theory, the site-specific strategies and resulting partnerships vary markedly, representing the whole continuum of integrated knowledge translation.The diversity of approaches is due to different understandings of IKT, discontinuity of staff, lack of IKT training, and perceptions of usefulness (compared to ongoing research activities) among CEBHA+ researchers.The individual, dynamic and often pre-existing relationships of researchers and partners from policy and practice are central to IKT, but capturing these within the programme theory and monitoring them remains challenging. Conclusions These observations are useful to guide further evaluation and cross-country comparison. Close examination of relationships and conceptualisation of IKT as a continuum may provide valuable insights into the circumstances that make IKT efforts worthwhile. Key messages Translating evidence into policy and practice is reliant on partnerships between researchers and policy-and-practice partners. These can be formalised but the relationships remain complex and dynamic.

scholarly journals Clinician-researcher’s perspectives on clinical research during the COVID19 pandemic

PLoS ONE ◽  
2020 ◽  
Vol 15 (12) ◽  
pp. e0243525
Author(s):  
Sarah L. Silverberg ◽  
Lisa M. Puchalski Ritchie ◽  
Nina Gobat ◽  
Alistair Nichol ◽  
Srinivas Murthy
Keyword(s):  
Clinical Research ◽  
Research Process ◽  
Research Quality ◽  
Research Networks ◽  
Online Questionnaire ◽  
Cross Sectional ◽  
Survey Tool ◽  
Research Activities ◽  
Conducting Research ◽  
Research Demands

Objectives The outcome of well-performed clinical research is essential for evidence-based patient management during pandemics. However, conducting clinical research amidst a pandemic requires researchers to balance clinical and research demands. We seek to understand the values, experiences, and beliefs of physicians working at the onset of the COVID-19 pandemic in order to inform clinical research planning. We aim to understand whether pandemic settings affect physician comfort with research practices, and how physician experiences shape their understanding of research in a pandemic setting. Methods A survey tool was adapted to evaluate familiarity and comfort with research during a pandemic. A cross-sectional, online questionnaire was distributed across Canadian research networks early in the COVID-19 outbreak. The survey was administered between March 11th and 17th, 2020, during a time of local transmission but prior to the surge of cases. We aimed to recruit into the survey physicians in infectious disease and critical care research networks across Canada. Results Of the 133 physician respondents, 131 (98%) considered it important to conduct clinical research during the COVID-19 pandemic. Respondents were more accepting of adaptations to the research process in during a pandemic compared to in a non-pandemic setting, including conducting research with deferred consent (χ2 = 8.941, 95% CI: -0.264, -0.085, p = 0.003), using non-identifiable observational data with a waiver of consent with a median score of 97 out of 100 (IQR: 79.25–100) vs median 87 out of 100 (IQR: 63–79) (95% CI: -12.43, 0.054, p = 0.052). The majority felt that research quality is not compromised during pandemics. Conclusions Physicians consider it important to conduct research during a pandemic, highlighting the need to expedite research activities in pandemic settings. Respondents were more accepting of adaptations to the research process for research conducted during a pandemic, compared to that conducted in its absence of a pandemic.

Community participation in health research: an ethnography from rural Swaziland

2019 ◽  
Vol 35 (1) ◽  
pp. e59-e69 ◽  
Author(s):  
Michelle R Brear ◽  
Karin Hammarberg ◽  
Jane Fisher
Keyword(s):  
Community Participation ◽  
Health Research ◽  
Participant Observation ◽  
Research Participation ◽  
Research Process ◽  
Ethnographic Study ◽  
Community Members ◽  
Research Activities ◽  
Participatory Health Research ◽  
Participation In Research

Summary Community participation in all aspects of health research is widely advocated. However, there is a lack of specificity in reporting what community members actually do, and reported participation is typically limited to discrete research activities. Greater specificity in reporting has potential to clarify how community participation might occur and how it might influence empowerment and research rigour. We conducted an ethnographic study of participatory health research (PHR) in a socio-economically marginalized rural Swazi community. Data about 10 community co-researchers’ participation in research workshops and field work were collected through participant observation over 14 months and analysed using directed content analysis, informed by the Comprehensive Community Participation in Research Framework (CCPRF). The analysis demonstrated that facilitating extensive community participation in PHR is feasible and identified 10 new research process activities in which community members might participate, for inclusion in an expanded CCPRF. We provide examples of how community members might participate in 57/59 expanded CCPRF activities and show that participatory, dialogue-based activities can be effective tools for facilitating research participation in ways that empower individual co-researchers and enhance research rigour. However, our results highlight limitations of community participation related to utilizing research results to inform actions, and empowering communities to control their environments and improve their health.

The Research Project «Names of Modern Professions» in Extracurricular Work with 6-th Grade Russian Students

2020 ◽  
Vol 81 (6) ◽  
pp. 23-31
Author(s):  
M. I. Vasileva
Keyword(s):  
Theoretical Analysis ◽  
Scientific Literature ◽  
Research Process ◽  
Russian Language ◽  
Research Project ◽  
Educational Activities ◽  
Research Activities ◽  
The Russian Language ◽  
Selection Of

The aim of the study was to investigate approaches to the formation of general educational skills. A survey examining the design and research process was carried out by 6th-grade Russian students over the course of an extracurricular project entitled «Names of Modern Professions». In the paper, the selection of the «Lexicology» section for such activities carried out by school pupils is substantiated and stages of work on the project are described. The applied methodology involves theoretical analysis of scientific literature, formative experimentation, analysis of products of educational activities, observation and description. It is concluded that the design of extracurricular research activities in the Russian language contributes to the formation of general educational competencies in conducting surveys and searching for information on the basis of subject skills.

Fundamental study on clarification of brain molecular pathology of Nasu-Hakola disease

Impact ◽  
2019 ◽  
Vol 2019 (8) ◽  
pp. 24-26
Author(s):  
Jun-ichi Satoh
Keyword(s):  
Multiple Sclerosis ◽  
Human Brain ◽  
Clinical Research ◽  
Neurodegenerative Diseases ◽  
Molecular Pathology ◽  
Large Scale ◽  
Molecular Pathogenesis ◽  
Novel Therapies ◽  
Brain Pathology ◽  
Fundamental Study

Brain pathology expert Dr Jun-ichi Satoh, from the Department of Bioinformatics and Molecular Neuropathology of Meiji Pharmaceutical University in Tokyo, is drawing on his expertise on neurology and neuroimmunology to delve into some of the more complex diseases impacting the human brain. His knowledge and expertise have allowed him to direct his research interests to study neurodegenerative diseases, such as Alzheimer's disease (AD), and neuroinflammatory diseases, such as multiple sclerosis (MS), and the analysis of their molecular pathogenesis by using a bioinformatics approach. His current focus is on Nasu-Hakola disease (NHD), a disease whose rarity has posed significant barriers towards performing large-scale clinical research in order to understand what exactly causes this disease and develop effective novel therapies.

scholarly journals Predominant cognitive phenotypes in multiple sclerosis: insights from patient-centered outcomes

2021 ◽  
pp. 102919
Author(s):  
Jessica Podda ◽  
Michela Ponzio ◽  
Ludovico Pedullà ◽  
Margherita Monti Bragadin ◽  
Mario Alberto Battaglia ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Patient Centered

scholarly journals Erratum to: Disentangling Multiple Sclerosis and depression: an adjusted depression screening score for patient-centered care

2015 ◽  
Vol 39 (1) ◽  
pp. 178-178
Author(s):  
Douglas D. Gunzler ◽  
Adam Perzynski ◽  
Nathan Morris ◽  
Robert Bermel ◽  
Steven Lewis ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Patient Centered Care ◽  
Depression Screening ◽  
Patient Centered ◽  
Centered Care

scholarly journals Engaging Nurses in Research for a Randomized Clinical Trial of a Behavioral Health Intervention

2013 ◽  
Vol 2013 ◽  
pp. 1-6 ◽  
Author(s):  
Lona Roll ◽  
Kristin Stegenga ◽  
Verna Hendricks-Ferguson ◽  
Yvonne J. Barnes ◽  
Brooke Cherven ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Research Participation ◽  
Research Process ◽  
Direct Care ◽  
Cell Transplant ◽  
Music Therapists ◽  
Practice Nurses ◽  
Clinical Research Coordinators ◽  
Smart Study ◽  
Adult Resilience

Nurse involvement in research is essential to the expansion of nursing science and improved care for patients. The research participation challenges encountered by nurses providing direct care (direct care nurses) include balancing patient care demands with research, adjusting to fluctuating staff and patient volumes, working with interdisciplinary personnel, and feeling comfortable with their knowledge of the research process. The purpose of this paper is to describe efforts to engage nurses in research for the Stories and Music for Adolescent/Young Adult Resilience during Transplant (SMART) study. SMART was an NIH-funded, multisite, randomized, behavioral clinical trial of a music therapy intervention for adolescents/young adults (AYA) undergoing stem cell transplant for an oncology condition. The study was conducted at 8 sites by a large multidisciplinary team that included direct care nurses, advanced practice nurses, and nurse researchers, as well as board-certified music therapists, clinical research coordinators, and physicians. Efforts to include direct care nurses in the conduct of this study fostered mutual respect across disciplines in both academic and clinical settings.

CREATION OF RESEARCH-ORIENTED COMPETENCE-CELL-BASED PRODUCTION NETWORKS

2009 ◽  
Vol 06 (03) ◽  
pp. 283-303 ◽  
Author(s):  
ALEJANDRO MEJIA ◽  
DIETER WEIDLICH
Keyword(s):  
Research Process ◽  
Production Network ◽  
Production Networks ◽  
Innovation Potential ◽  
Research Activities ◽  
Innovative Products ◽  
Innovative Capabilities ◽  
New Ideas ◽  
Internal Sources ◽  
Hierarchical Selection

With the basis that research is one of the most important internal sources for innovation, a new approach to create competence-cell-based production networks focused on research activities is presented. Thus, a research process, specific for competence-cell-based networks, is also described. In this process, which is subdivided in different phases, the competence-cells, as the smallest performance units, are temporarily linked in a production network. They cooperate to carry out industry-oriented applied research to generate new ideas or technologies to be used in innovative products. For this process, an approach for the non-hierarchical selection of the necessary competence cells is also introduced. This selection is accomplished by means of the innovation potential, which is based on parameters that evaluate nearly objectively the innovative capabilities of the competence cells.

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