The Rare Knowledge Mining Methodological Framework for the Development of Practice Guidelines and Knowledge Translation Tools for Rare Diseases

2021 ◽  
pp. 1-13
Author(s):  
C. Gagnon ◽  
J. Fortin ◽  
M.E. Lamontagne ◽  
A. Plourde
Keyword(s):  
Knowledge Translation ◽  
Rare Diseases ◽  
Research Evidence ◽  
Clinical Care ◽  
Clinical Trial Design ◽  
Knowledge Mining ◽  
Translation Tools ◽  
Care Guidelines ◽  
Published Research ◽  
Expert Patients

Rare diseases bring on a heavy health, social and economic burden that impacts patients’ lives and puts pressure on the healthcare system. Furthermore, they are often associated with limited published studies to inform multidisciplinary clinical practice thus limiting evidence-based practice. Moreover, the development of knowledge translation products including clinical care guidelines are often very challenging based on the current available methodological frameworks relying mostly on critical appraisal of the published research evidence where randomized clinical trial design is considered as the gold standard. To overcome this barrier, we proposed the Rare Knowledge Mining Methological Framework (RKMMF). The RKMMF is one possible answer to improve the development of knowledge translation products for rare diseases. This framework includes other sources of evidence including registry information and qualitative studies and the involvement of expert patients. This article documents the RKMMF structure and its application is exemplified through knowledge translation products developed for a neuromuscular population.

scholarly journals Knowledge Translation Platform Increasing Use of Research Evidence in Physical Activity Policy Making - A Case Study in Finland

2017 ◽  
Vol 9 (9) ◽  
pp. 126 ◽  
Author(s):  
Riitta-Maija Hämalainen
Keyword(s):  
Physical Activity ◽  
Knowledge Translation ◽  
Research Evidence ◽  
The Public ◽  
Translation Tools ◽  
Physical Activity Policy ◽  
The Government ◽  
Promising Development ◽  
Use Of Research

BACKGROUND: Knowledge Translation Platform (KTP) in partnerships between policymakers, stakeholders, and researchers was established in order to enhance evidence-informed policymaking on physical activity. The article aims to give answers to specific questions, such as what were the main knowledge translation tools to improve access to research evidence in physical activity policy in Finland; which factors facilitated the improvements in use of research evidence, and what kind of procedures were implemented to improve the use of research evidence in policy making.METHODS: The study triangulated qualitative data from documents, reviews and observations of meetings between 2012 and 2013. Purposive sampling of meeting documents was used and data was analysed using a thematic content analysis of documents.RESULTS: KTP contributed to an increased awareness of the importance of the use of research evidence in physical activity policymaking, and strengthened relationships between policymakers, stakeholders and researchers. Support from policymakers and professionals as well as a window of opportunity facilitated KTP activities. Based on the KTP experience, institutionalization within the government could help to keep the use of research evidence high on the agenda.CONCLUSIONS: The case study provided unique insights into what counts for developing use of research evidence in policymaking. The expectations of the public policy were to give a larger role to evidence-informed policymaking, but expectations conflicted between the interests of various stakeholders. The establishment of KTP was a promising development in supporting the use of research evidence in physical activity policymaking. Real-time lesson drawing from the experiences of KTP can support improvements in the functioning of KTP in the short term, while making the case for sustaining their work in the long term.

Implementing Cancer Exercise Rehabilitation: An Update on Recommendations for Clinical Practice

2019 ◽  
Vol 15 (2) ◽  
pp. 100-109 ◽  
Author(s):  
Kirsten Suderman ◽  
Carolyn McIntyre ◽  
Christopher Sellar ◽  
Margaret L. McNeely
Keyword(s):  
Cancer Survivors ◽  
Research Evidence ◽  
Clinical Care ◽  
Preliminary Evidence ◽  
Model Of Care ◽  
Community Based ◽  
Exercise Rehabilitation ◽  
Barriers To Exercise ◽  
Growing Body ◽  
After Cancer

A growing body of research evidence supports the benefit of exercise for cancer survivors both during and after cancer treatment. The purpose of this paper is to provide an update on our previously published review in 2006 on the state of the evidence supporting exercise for survivors of cancer as well as guidelines for integrating exercise programming in the cancer clinical setting. First, we provide a brief overview on the benefits of exercise as well as preliminary evidence supporting the implementation of community-based exercise programs. Second, we summarize the principles and goals of exercise, and the identified barriers to exercise among cancer survivors. Finally, we propose an interdisciplinary model of care for integrating exercise programming into clinical care including guidelines for medical and pre-exercise screening, exercise testing and programming considerations.

Reduction in Pediatric Ambulatory Adenotonsillectomy Length of Stay Using Clinical Care Guidelines

2021 ◽  
Author(s):  
Jennifer Lavin ◽  
Abbey Studer ◽  
Dana Thompson ◽  
Jonathan Ida ◽  
Jeff Rastatter ◽  
...  
Keyword(s):  
Length Of Stay ◽  
Clinical Care ◽  
Care Guidelines

Improving consent forms for first-in-human trials through participant feedback.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. e13563-e13563
Author(s):  
Hannah Claire Sibold ◽  
Gavin Paul Campbell ◽  
John Bourgeois ◽  
Margie D. Dixon ◽  
R Donald Harvey ◽  
...  
Keyword(s):  
Patient Preferences ◽  
Clinical Trial Design ◽  
Study Drug ◽  
Clinic Visit ◽  
Consent Form ◽  
Consent Forms ◽  
Investigational Agents ◽  
Study Participants ◽  
Background Risks ◽  
Published Research

e13563 Background: Risks and benefits of investigational agents that have not been tested in humans are, at best, incompletely characterized in nonclinical investigations. Despite the growing emphasis to include patient voices in clinical trial design, no published research has explored patient preferences on how best to convey the information that the agent has not been tested in humans. This study established that First in Human (FIH) consent forms present this information in different locations and queried participants for their input on the preferable FIH consent form structure. Methods: Consent forms for FIH oncology trials open to accrual at Winship Cancer Institute in 2019-2020 were analyzed for (1) the location of the mention that the study drug has not been used in humans before (FIH information), (2) the location of animal and other nonclinical data, and (3) placement of the risks section. Patients offered enrollment in a FIH trial were eligible for this study. Participants were interviewed during a clinic visit after consent was obtained. An ethics researcher asked questions about the participant’s opinions on the wording and placement of the FIH, nonclinical, and risk information in the specific trial consent form. All interviews were audio-recorded and double coded by two independent coders. The location of FIH and nonclinical data in the consent forms was compared to the patient’s suggested location for this information. Results: Saturation of themes was reached after interviewing 17 (17/19, 89% accrual) participants who were enrolled in 9 different FIH trials. Twenty FIH consents were qualitatively analyzed. Preferred placement compared to actual consent placement is listed in the table. 82% (14/17) of participants thought that nonclinical data on risks and efficacy was important to mention. 95% (19/20) of consents listed nonclinical data and most participants thought the placement in the consent was appropriate but 18% (3/17) of participants wanted the information earlier in the consent. No consent forms that were analyzed had the risks section before the study schedule; however, 47% (8/17) of participants wanted to move the risks sections before the study schedule. Conclusions: There is considerable variation in the layout of FIH consent forms that does not align with patient preferences. Standardization of FIH consent forms to better reflect patient input is essential in order to promote understandability of these important yet sometimes misunderstood clinical trials and to ensure ethical informed consent.[Table: see text]

A Review of Implementation Concepts and Strategies Surrounding Traumatic Brain Injury Clinical Care Guidelines

2021 ◽  
Author(s):  
Angela Lumba-Brown ◽  
Eric M Prager ◽  
Nicole Harmon ◽  
Michael McCrea ◽  
Michael J. Bell ◽  
...  
Keyword(s):  
Traumatic Brain Injury ◽  
Brain Injury ◽  
Clinical Care ◽  
Care Guidelines

scholarly journals Home spirometry utilisation in telemedicine clinic for cystic fibrosis care during COVID-19 pandemic: a quality improvement process

2021 ◽  
Vol 10 (3) ◽  
pp. e001529
Author(s):  
Martina Compton ◽  
Rhonda List ◽  
Elissa Starheim ◽  
Lindsay Somerville ◽  
Lauren Williamson ◽  
...  
Keyword(s):  
Cystic Fibrosis ◽  
Quality Improvement ◽  
Chronic Care ◽  
Clinical Care ◽  
Forced Expiratory Volume ◽  
University Of Virginia ◽  
Care Model ◽  
Lung Function Decline ◽  
Quality Improvement Process ◽  
Care Guidelines

IntroductionThe Cystic Fibrosis (CF) Foundation chronic care guidelines recommend monitoring spirometry during quarterly multidisciplinary visits to identify early lung function decline. During the COVID-19 pandemic, the CF adult clinic at University of Virginia (UVA) transitioned from the classic CF care model to a model that included quarterly multidisciplinary telemedicine visits. While using telemedicine, CF care needed to include spirometry monitoring. Only a fraction of adult CF patients at UVA owned and used home spirometers (HS) in March 2020.AimThe specific aims of this quality improvement (QI) project were to increase the percentage of eligible adult CF patients who owned an HSs from 37% to 85% and to increase the percentage of adult CF patients seen at UVA with available spirometry in telemedicine from 50% to 95% by 31 December 2020.MethodsFollowing the Model for Improvement QI methodology, a standardised process was developed for monitoring forced expiratory volume in 1 s with HS during multidisciplinary telemedicine visits during the COVID-19 pandemic.Intervention(1) HSs were distributed to eligible patients and (2) Home spirometry was monitored in eligible patients with each telemedicine visit and results were used for clinical care decisions.ResultsBoth specific aims were achieved ahead of expected date. In March 2020, the beginning of the pandemic, 37% (49/131) of patients owned an HS and 50% (9/18) of patients seen via telemedicine performed spirometry at home. By September 2020, 97% (127/131) of adult patients at UVA owned an HS and by October 2020, 96% (24/25) of patients provided spirometry results during their telemedicine encounters.ConclusionEmploying QI tools to standardise the process of monitoring spirometry data with home devices via telemedicine is reliable and sustainable and can be replicated across centres that provide care for patients with CF.

scholarly journals A national CASC course

BJPsych Open ◽  
2021 ◽  
Vol 7 (S1) ◽  
pp. S152-S153
Author(s):  
Yathooshan Ramesh ◽  
Lisanne Stock
Keyword(s):  
Clinical Care ◽  
Recent Experience ◽  
National Guidelines ◽  
Psychological Therapies ◽  
Qualitative Feedback ◽  
Online Lecture ◽  
Online Format ◽  
Published Research ◽  
Interactive Lecture ◽  
Academic Programme

AimsThere was understandable anxiety from trainees about the transition to the online format of the CASC due to the pandemic. There is also significant variability between trusts in the availability of lectures tailored specifically to the CASC exam. Having recent experience of the CASC exam, including the online format, we developed a free online lecture series. We aimed to address common questions relating to the exam, and selected topics that trainees may find daunting or had less experience with through clinical care. The topics covered were: An Introduction to the CASC, Mental State Examinations, Psychological Therapies, Pharmacology and a Q&A Session.MethodThe course was designed to tackle areas that trainees often find difficult based on our own experiences as well as surveying course attendees. Prior to the course, we liaised with consultant site tutors & junior doctor representatives to integrate the course into the local academic programme, and to facilitate promotion of the session to trainees across sites. We subsequently offered registration to trainees nationally. The course was planned and delivered by the organisers through interactive lecture-based presentations with handouts, ahead of the January 2021 examinations. Content was based on national guidelines and published research. 5 sessions were delivered with the final session including guest consultant panellists to answer trainee questions. Quantitative and qualitative feedback was collected from the attendees.Result172 doctors registered onto the course, with 44 NHS trusts represented. Doctors from a variety of grades attended, with 55% CT3s, 17% Specialty Doctors, 16% CT2s, 8% CT1s, 4% in other roles. 100% of attendees stated that they would recommend the course to any doctor sitting the CASC. 97% of attendees rated the course as either ‘Excellent’ or ‘Good’. Qualitative feedback was positive and 3 themes were identified- communication, content and the online format.ConclusionThe CASC course provided an opportunity to deliver national teaching to trainees based on national guidelines and peer-reviewed research, with a focus on addressing areas that trainees may feel less confident with. The course received significant positive feedback from attendees. The significant number of pre-CT3 trainees attending the course suggests that there may be an interest from this group for further support in developing the complex communication skills that ultimately are assessed by the CASC exam.

Title: Web-based Knowledge Translation Tools for Parents about Childhood Heart Failure: An Environmental Scan (Preprint)

2021 ◽  
Author(s):  
Chentel Cunningham ◽  
Hylein Sung ◽  
James Benoit ◽  
Jennifer Conway ◽  
Shannon D Scott
Keyword(s):  
Heart Failure ◽  
Knowledge Translation ◽  
Health Information ◽  
Hospital Admissions ◽  
Qualitative Interviews ◽  
Structured Interview ◽  
Web Based ◽  
Key Informants ◽  
Environmental Scan ◽  
Translation Tools

BACKGROUND Childhood heart failure is a factor in many hospital admissions each year. It can impose a steep learning curve for parents who need to learn the key information to care for their child at home. In this study, we conducted an environmental scan to identify and assess web-based knowledge translation tools about childhood heart failure for parent audiences developed within North America. OBJECTIVE The aim of this study is to inventory tool publicly available to parents about childhood heart failure from popular web-based venues, and assess each how each tool communicates health information and explore how they were developed. METHODS Modelled after previously published environmental scan methods, our search strategy included searching two popular internet-based venues including: 1) two App stores (Google PlayTM and Apple AppTM) and 2) GoogleTM search. Common search terms were used and results were uploaded to Microsoft Excel for screening amongst two reviewers. Inclusion criteria included: 1) content primarily focused on educating parents about their child’s heart failure, 2) English language, and 3) tools originated within North American. Two reviewers screened the application (app) store and internet search results for relevant tools. Each tool was assessed using the Suitability Assessment of Materials (SAM), a validated tool that objectively assesses the literacy of health information for a particular audience. Key informants who were involved in the tool development were invited for a qualitative interview using semi structured interview guide to provide more adjunct data about the development process. Frequencies were reported to summarize App and Internet screening and SAM rating results. Key themes were identified in the semi-structured interview process. RESULTS No applications exist for parents relating to pediatric heart failure. Seventeen relevant internet tools were identified, and their suitability was assessed for the parent audience. The tools scored well in the layout and type but lower in the readability and graphics scores. Qualitative interviews with key informants revealed three key themes: 1) timely & introductory knowledge, 2) credible & trustworthy knowledge, and 3) challenges & evolution in knowledge. CONCLUSIONS This is the first environmental scan looking for parent tool relating to childhood heart failure. Findings from this study reveal that no tools scored in the superior range using the Suitability of Materials Assessment and that further work in the area of knowledge translation targeting parents needs to be done to provide effective education for this parent population. These findings will inform the development of a new resource on children’s heart failure. CLINICALTRIAL Not applicable

Drones in Healthcare

2019 ◽  
pp. 86-114 ◽  
Author(s):  
Berk Anbaroğlu
Keyword(s):  
Air Quality ◽  
Research Evidence ◽  
Swot Analysis ◽  
Humanitarian Logistics ◽  
Search And Rescue ◽  
Aerial Photographs ◽  
Public Acceptance ◽  
Blood Products ◽  
Medical Supplies ◽  
Published Research

This chapter discusses the use of drones in healthcare with a specific focus on humanitarian logistics. Drones have already been used in healthcare in different aspects, including transfer of blood products, search and rescue missions, or collecting different types of data including aerial photographs, air quality, or radiation levels. Even though the published research evidence in the area of “drones in healthcare” is almost 1% of the broader area of “drones,” the progress in public acceptance, regulations, as well as technology is undeniable. This chapter summarizes the different aspects regarding the use of drones in healthcare, while specifically focusing on humanitarian logistics. The SWOT analysis indicate that the strengths and opportunities weigh more than the weaknesses and threats, suggesting that drones will revolutionize the way medical supplies are delivered within the coming years.

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