Guidance on development and operation of Young Persons’ Advisory Groups

2020 ◽  
Vol 105 (9) ◽  
pp. 875-880
Author(s):  
Winnie Chan ◽  
Pravheen Thurairajah ◽  
Nancy Butcher ◽  
Cor Oosterwijk ◽  
Kim Wever ◽  
...  
Keyword(s):  
Clinical Research ◽  
Best Practice ◽  
Public Involvement ◽  
Web Based ◽  
The Public ◽  
Research Areas ◽  
Advisory Groups ◽  
Semistructured Interviews ◽  
Needs Assessment Survey ◽  
The Impact

BackgroundEngaging patients and the public as collaborators in research is increasingly recognised as important as such partnerships can help improve research relevance and acceptability. Young Persons’ Advisory Groups (YPAGs) provide a forum for clinical researchers and triallists to engage with children and young people on issues relevant to the design, conduct and translation of paediatric clinical trials. Until fairly recently, there was very little information available to guide the successful development and operation of YPAGs.ObjectiveTo develop an evidence-based tool to guide clinical researchers and triallists in the establishment and operation of a YPAG.MethodsAn online needs assessment survey was conducted using SurveyMonkey with 60 known paediatric drug researchers to identify knowledge gaps around YPAG engagement, development and operation. Semistructured interviews with founders and coordinators of five well-established existing YPAGs and a review of the literature were performed to identify best-practice processes for starting up and operating YPAG.ResultsThe majority of 12 survey respondents (20%) from 12 different centres indicated that while they felt YPAGs could benefit their research, guidance on how to develop and operate a YPAG was needed. Most preferred a web-based guidance tool. Ten core steps in starting up and operating a YPAG were identified and developed into an online YPAG guidance tool, now freely accessible for use by paediatric clinical researchers worldwide. Plans to evaluate the impact are in place.ConclusionsThis novel tool, developed with an internationally based group of public involvement leads working across paediatric clinical research areas, provides harmonised guidance for researchers seeking to develop and operate YPAGs to help improve the quality and impact of paediatric clinical research studies.

Gender inequities in the online dissemination of scholars’ work

2021 ◽  
Vol 118 (39) ◽  
pp. e2102945118
Author(s):  
Orsolya Vásárhelyi ◽  
Igor Zakhlebin ◽  
Staša Milojević ◽  
Emőke-Ágnes Horvát
Keyword(s):  
Gender Gap ◽  
Large Scale ◽  
Gender Disparities ◽  
Female Representation ◽  
Scientific Impact ◽  
The Public ◽  
Research Areas ◽  
Coauthorship Networks ◽  
The Impact ◽  
The Relationship

Unbiased science dissemination has the potential to alleviate some of the known gender disparities in academia by exposing female scholars’ work to other scientists and the public. And yet, we lack comprehensive understanding of the relationship between gender and science dissemination online. Our large-scale analyses, encompassing half a million scholars, revealed that female scholars’ work is mentioned less frequently than male scholars’ work in all research areas. When exploring the characteristics associated with online success, we found that the impact of prior work, social capital, and gendered tie formation in coauthorship networks are linked with online success for men, but not for women—even in the areas with the highest female representation. These results suggest that while men’s scientific impact and collaboration networks are associated with higher visibility online, there are no universally identifiable facets associated with success for women. Our comprehensive empirical evidence indicates that the gender gap in online science dissemination is coupled with a lack of understanding the characteristics that are linked with female scholars’ success, which might hinder efforts to close the gender gap in visibility.

Enhancing E-Participation in Urban Planning Competitions

2022 ◽  
pp. 1238-1265
Author(s):  
Pilvi Nummi ◽  
Susa Eräranta ◽  
Maarit Kahila-Tani
Keyword(s):  
Urban Planning ◽  
Public Participation ◽  
Early Phase ◽  
Evaluation Process ◽  
Web Based ◽  
The Public ◽  
Innovative Solutions ◽  
Local Residents ◽  
Competition Process ◽  
The Impact

Planning competitions are used as a way to determine alternatives and promote innovative solutions in the early phase of urban planning. However, the traditional jury-based evaluation process is encountering significant opposition, as it does not consider the views of local residents. This chapter describes how web-based public participation tools are utilized in urban planning competitions to register public opinion alongside the expert view given by the jury. The research focus of this chapter is on studying how public participation can be arranged in competition processes, how the contestants use the information produced, and how it has been utilized in further planning of the area. Based on two Finnish case studies, this study indicates that web-based tools can augment public participation in the competition process. However, the results indicate that the impact of participation on selecting the winner is weak. Instead, in further planning of the area, the public opinions are valuable.

scholarly journals Sedation/Analgesia Administration Practice Varies according to Endoscopy Facility (Hospital- or Office-Based) Setting: Results from a Nationwide Survey in Greece

2020 ◽  
Vol 2020 ◽  
pp. 1-9
Author(s):  
Georgios Tziatzios ◽  
Dimitrios N. Samonakis ◽  
Theocharis Tsionis ◽  
Spyridon Goulas ◽  
Dimitrios Christodoulou ◽  
...  
Keyword(s):  
Airway Management ◽  
Public Hospital ◽  
Private Hospital ◽  
Life Support ◽  
Advanced Life Support ◽  
Nationwide Survey ◽  
Web Based ◽  
The Public ◽  
Management Techniques ◽  
The Impact

Objectives. To examine the impact of endoscopy setting (hospital-based vs. office-based) on sedation/analgesia administration and to provide nationwide data on monitoring practices among Greek gastroenterologists in real-world settings. Material and Methods. A web-based survey regarding sedation/analgesia rates and monitoring practices during endoscopy either in a hospital-based or in an office-based setting was disseminated to the members of the Hellenic Society of Gastroenterology and Professional Association of Gastroenterologists. Participants were asked to complete a questionnaire, which consisted of 35 items, stratified into 4 sections: demographics, preprocedure (informed consent, initial patient evaluation), intraprocedure (monitoring practices, sedative agents’ administration rate), and postprocedure practices (recovery). Results. 211 individuals responded (response rate: 40.3%). Propofol use was significantly higher in the private hospital compared to the public hospital and the office-based setting for esophagogastroduodenoscopy (EGD) (85.8% vs. 19.5% vs. 10.5%, p<0.0001) and colonoscopy (88.2% vs. 20.1% vs. 9.4%, p<0.0001). This effect was not detected for midazolam, pethidine, and fentanyl use. Endoscopists themselves administered the medications in most cases. However, a significant contribution of anesthesiology sedation/analgesia provision was detected in private hospitals (14.7% vs. 2.8% vs. 2.4%, p<0.001) compared to the other settings. Only 35.2% of the private offices have a separate recovery room, compared to 80.4% and 58.7% of the private hospital- and public hospital-based facilities, respectively, while the nursing personnel monitored patients’ recovery in most of the cases. Participants were familiar with airway management techniques (83.9% with bag valve mask and 23.2% with endotracheal intubation), while 49.7% and 21.8% had received Basic Life Support (BLS) and Advanced Life Support (ALS) training, respectively. Conclusion. The private hospital-based setting is associated with higher propofol sedation administration both for EGD and for colonoscopy. Greek endoscopists are adequately trained in airway management techniques.

scholarly journals Evaluation of a patient and public involvement training programme for researchers at a large biomedical research centre in the UK

BMJ Open ◽  
2021 ◽  
Vol 11 (8) ◽  
pp. e047995
Author(s):  
Rosamund Yu ◽  
Bec Hanley ◽  
Simon Denegri ◽  
Jaber Ahmed ◽  
Nicholas J McNally
Keyword(s):  
Biomedical Research ◽  
Public Involvement ◽  
Good Practice ◽  
Training Programme ◽  
Patient And Public Involvement ◽  
Research Centre ◽  
Major Research ◽  
The Public ◽  
The Uk ◽  
The Impact

ObjectivesTo design, deliver and evaluate a programme of training workshops for biomedical researchers aimed at building confidence and skills in actively involving patients and the public (PPI) in research.DesignA bespoke programme of training workshops in PPI aimed at researchers.SettingA large National Institute for Health Research Biomedical Research Centre in London and several partner organisations.Participants721 scientists, clinicians and research managers attending dedicated training in PPI at a major London NHS (National Health Service)–university partnership.InterventionsA programme of 72 training workshops, designed to build practical skills and confidence for researchers working with patients and the public in research, was delivered at a major research-active NHS:university partnership. An iterative approach was taken to the programme, with the content of the workshops continually reviewed and refreshed to respond to the needs of researchers. Surveys before, immediately following and 6 months after training investigated the impact on researchers’ confidence and skills in PPI work, and the kind of PPI they subsequently carried out.ResultsTraining brought about immediate marked increases in researchers’ self-reported confidence to carry out PPI activities within their research, and in their knowledge of good practice. The evaluation indicates that workshop attendees were more likely to involve patients in their research following training. Researchers tended to involve patients and the public in a range of areas, including input to study design and patient information, in particular.ConclusionsWhen positioned within a broader organisational strategy for PPI in research, such training has an important role to play in progressing PPI in a major research partnership. Training appeared to provide the confidence needed to carry out PPI which enabled further development of confidence and skills. Involving researchers who have attended the training in the ongoing development of the programme and bringing in patients to the training programme are key next steps.

scholarly journals “Opening a Can of Worms”: Public hopes and fears on healthcare data sharing. A qualitative study. (Preprint)

2020 ◽  
Author(s):  
Olivia Lounsbury ◽  
Lily Roberts ◽  
Jonathan R Goodman ◽  
Pip Batey ◽  
Lenny Naar ◽  
...  
Keyword(s):  
Data Sharing ◽  
Public Involvement ◽  
Healthcare Professionals ◽  
Local Level ◽  
Human Centered Design ◽  
Patient Centred Care ◽  
The Public ◽  
Healthcare Data ◽  
Qualitative Feedback ◽  
The Impact

BACKGROUND Evidence suggests that healthcare data sharing may strengthen care coordination, improve quality and safety, and reduce costs. However, in order to achieve efficient, meaningful adoption of healthcare data sharing initiatives, it is necessary to engage all stakeholders, from healthcare professionals to patients. Although previous work has assessed healthcare professionals’ perceptions of data sharing, the general public perspectives and particularly seldom heard groups, have yet to be fully assessed. OBJECTIVE This study aims to explore public views, particularly their hopes and concerns, around healthcare data sharing. METHODS An original, immersive public engagement interactive experience was developed - “The Can of Worms” installation - in which participants were prompted to reflect about data sharing through listening to individual stories around healthcare data sharing. A multidisciplinary team with expertise in research, public involvement and human-centered design developed the concept. The installation took place in three separate events, between Nov 2018 and Nov 2019. A combination of convenience and snowballing sampling was used. Participants were asked to fill self-administered feedback cards, and to describe their hopes and fears about the meaningful use of data in healthcare. The transcripts were compiled verbatim and systematically reviewed by four independent reviewers using the thematic analysis method to identify emerging themes. RESULTS Our approach exemplifies the potential of using interdisciplinary expertise in research, public involvement and human-centered design, to tell stories, collect perspectives, and spark conversation around complex topics in participatory digital medicine. A total of 352 qualitative feedback cards were collected, each reflecting participants’ ‘hopes’ and ‘fears’ for healthcare data sharing. Thematic analyses identified six themes under ‘hopes’: (1) enablement of personal access and ownership, (2) increased interoperability and collaboration, (3) generation of evidence for better and safer care, (4) improved timeliness and efficiency, (5) delivery of more personalised care, and (6) equality. The five main ‘fears’ identified included (1) inadequate security and exploitation, (2) data inaccuracy, (3) distrust , (4) discrimination and inequality, and (5) less patient-centred care. CONCLUSIONS This work sheds new light on the main hopes and fears from the public in what concerns healthcare data sharing. Importantly, our results highlight novel concerns from the public, in particular in what concerns the impact on health disparities, both at international and local level and on delivering patient-centred care. Incorporating the knowledge generated and focusing on co-designing solutions to tackle these concerns is critical to engage the public as active contributors and to fully leverage the potential of healthcare data use. CLINICALTRIAL Not applicable

scholarly journals INEFISIENSI PENGADAAN TANAH UNTUK KEPENTINGAN UMUM (Studi Kasus Pembangunan Waduk Jatigede di Kabupaten Sumedang)

2019 ◽  
Vol 1 (1) ◽  
pp. 51-70
Author(s):  
Idah Wahidah
Keyword(s):  
Research Methods ◽  
Organizational Support ◽  
Quantitative Research ◽  
Institutional Commitment ◽  
Quantitative Research Methods ◽  
The Public ◽  
Qualitative And Quantitative ◽  
Semistructured Interviews ◽  
Descriptive Approach ◽  
The Impact

The construction of the Jatigede Dam for the public interest is imbalanced in its implementation. Based on the results of observations, researchers see a lot of problems that occur, including land acquisition issued a lot of regulations, implementation is quite long, and the costs incurred are quite large. The researcher uses E. Bardach's theory, to determine administrative operability (authority, institutional commitment, capability, organizational support) criteria, to find out the impact of policy researchers using the theory of Thomas R. Dye. Research methods and approaches are carried out with qualitative and quantitative research methods with a descriptive approach. The method of data collection is through observation, semistructured interviews and documentation. The informant selection technique uses purposive techniques and the validity of the data by data triangulation. The results of this study using the administrative operability criteria approach did not meet the criteria optimally

Enhancing E-Participation in Urban Planning Competitions

2018 ◽  
pp. 60-94
Author(s):  
Pilvi Nummi ◽  
Susa Eräranta ◽  
Maarit Kahila-Tani
Keyword(s):  
Urban Planning ◽  
Public Participation ◽  
Early Phase ◽  
Evaluation Process ◽  
Web Based ◽  
The Public ◽  
Innovative Solutions ◽  
Local Residents ◽  
Competition Process ◽  
The Impact

Planning competitions are used as a way to determine alternatives and promote innovative solutions in the early phase of urban planning. However, the traditional jury-based evaluation process is encountering significant opposition, as it does not consider the views of local residents. This chapter describes how web-based public participation tools are utilized in urban planning competitions to register public opinion alongside the expert view given by the jury. The research focus of this chapter is on studying how public participation can be arranged in competition processes, how the contestants use the information produced, and how it has been utilized in further planning of the area. Based on two Finnish case studies, this study indicates that web-based tools can augment public participation in the competition process. However, the results indicate that the impact of participation on selecting the winner is weak. Instead, in further planning of the area, the public opinions are valuable.

Best Practices in Anna Centenary Library Chennai: An Analysis on ‘Ponmalai Pozhudhu’

2019 ◽  
Vol 9 (S1) ◽  
pp. 1-4
Author(s):  
K. Saraswathi ◽  
S. Manikandan
Keyword(s):  
Best Practices ◽  
Best Practice ◽  
Civil Service ◽  
Public Libraries ◽  
Public Library ◽  
Work Process ◽  
The Public ◽  
The Impact

This paper is aimed to analyse the strategies applied for the best practices in Anna Centenary Library (ACL), Chennai. Best practice is a technique, used to advance the existing work process of an organization like library and information centers to achieve its purpose successfully. In the present day, public libraries are also started to focus on best practices as one of the services to retain the public. Anna Centenary Library falls under public library category, which follows best practices such as Orientation programme for civil service aspirants, weekly children programme and Ponmaalai Pozhudhu programme. A study was conducted among the readers of the library to analyze and know the impact of best practices followed by ACL particularly Ponmaalai Pozhudhu programme. It was revealed that Ponmaalai Pozhudhu Programme had a great impact among the readers of all the best practices being conducted by the library.

PP124 Smart Capability Building For Effective Patient Involvement

2019 ◽  
Vol 35 (S1) ◽  
pp. 59-60
Author(s):  
Claire Davis ◽  
Sophie Hughes ◽  
Susan Myles
Keyword(s):  
Best Practice ◽  
Patient Involvement ◽  
Public Involvement ◽  
Health Technology ◽  
Patient And Public Involvement ◽  
The Public ◽  
Health Technologies ◽  
Capability Building ◽  
Working Together ◽  
Strategy Building

IntroductionA new Health Technology Assessment (HTA) agency, Health Technology Wales (HTW), has been established to consider the identification, appraisal, and adoption of non-medicine health technologies. This includes, for example, medical devices, surgical procedures and diagnostics. HTW recognizes the importance of effective patient and public involvement (PPI) and is building smart capabilities.MethodsHTW consulted with external organizations to identify the first steps toward effective PPI. Public partners were recruited as a priority before working together on a PPI strategy. Building smart capabilities is key to establishing effective PPI and future-proofing. HTW established a PPI Standing Group to inform HTW throughout its work, including the development of processes and procedures.ResultsKnowledge and resources have been shared and future collaborations identified, including events to encourage new topics from patients and the public. The HTW PPI lead has become a member of key PPI groups, locally and internationally. HTW has recruited public partners who are actively contributing as full members of the Assessment Group and the Appraisal Panel; two members on each Committee. The PPI Standing Group has been established. They have provided advice and co-produced PPI tools for piloting.ConclusionsThe PPI Standing Group concluded that PPI methods and approaches should be tailored for each project based on best practice, and should be piloted to allow them to evolve based on impact evaluation. A PPI strategy or framework would be more useful at a later stage. HTW is committed to identifying and following best practice. Future-proofing and building smart capability will be key to ensuring that HTW develops effective PPI that can be dynamic and responsive to the evolving PPI and HTA landscapes.

scholarly journals The Impact and Effect of Learning 2.0 Programs in Australian Public Libraries

2012 ◽  
Vol 7 (1) ◽  
pp. 53 ◽  
Author(s):  
Michael Stephens ◽  
Warren Cheetham
Keyword(s):  
World Wide ◽  
Public Libraries ◽  
Public Library ◽  
Library Service ◽  
Data Set ◽  
Web Based ◽  
The Public ◽  
Library Staff ◽  
The Impact ◽  
Positive Effect

Abstract Objective – With adoption of the program world-wide, the Learning 2.0 model has been lauded by library professionals as a mechanism to educate library staff and transform libraries. This study, part of the 2009 CAVAL Visiting Scholar project, seeks to measure the impact and legacy of the model within Australian public libraries to understand what benefits, changes and effects occur. Methods – A national Web-based survey for those who had participated in a learning 2.0 program. Results – The national survey had 384 respondents, and a total of 64 respondents were identified as the public library staff data set for this article. Public library staff reported success in the program and described feelings of increased confidence, inclusivity, and a move to use emerging technologies as part of library service. Conclusion – The analysis yields the following thematic areas of impact and effect: personal practice is enhanced with knowledge and confidence; impact is mainly personal, but organisational changes may follow; the library is using the tools to varying degrees of success, and organizational blocks prevent use of tools. These finding offer evidence that Learning 2.0 programs can have a positive effect on library staff and subsequently on the organization itself.

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