The Role of EUPATI CH in Promoting Patient Involvement in Clinical Research: A Multi-Stakeholder Research Project

Background: The European Patients' Academy on Therapeutic Innovation Switzerland (EUPATI CH) was established as an association in 2016 with the mission to improve patient empowerment in Switzerland, raise public awareness of EUPATI's education material, and foster multi-stakeholder partnerships in order to promote public involvement in all aspects of medicines research and development (R&D). In order to achieve its goal of improving patient involvement (PI) in all processes of medicines R&D in Switzerland and to obtain guidance and recommendations for future activities, EUPATI CH initiated a multi-stakeholder survey on PI experiences, hurdles, and best practices. The survey enabled EUPATI CH to obtain and analyze the views of various stakeholders and shape its workplan.Methods: Data collection occurred between January and July 2019 using a survey and semi-structured interviews with individual stakeholders from different groups. The online survey responses were analyzed using quantitative methods and the interviews were analyzed using qualitative methods.Results: The online survey was completed by 55 respondents (10%), and the semi-structured interviews were conducted with 14 stakeholders. Respondents to the online survey were patient representatives (45%), researchers from academia (25%), individuals from the pharmaceutical industry (9%), healthcare professionals (23%), and representatives from government agencies (6%). Some respondents were also members of EUPATI CH. Thirty-eight percent of respondents consider PI in Switzerland to be limited or absent. They identified the main barriers to PI as, first and foremost, a lack of funds and human resources (65%), followed by a lack of information and a lack of education on how to become a patient advocate (21%), a lack of collaboration with other stakeholders (16%), and a lack of adequate resources. Respondents' expectations of EUPATI CH's role in supporting PI were to provide education for active PI and improve networking and collaboration among stakeholders.Conclusions: EUPATI CH's multi-stakeholder research identified some of the difficulties in promoting PI in medicines R&D in Switzerland, in particular the complex collaboration among stakeholders and a lack of funds, human resources, and knowledge. To respond to these difficulties, EUPATI CH has begun preparing a basic training course for patients that is adapted to Switzerland.

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Attitudes towards risk and decision-making within local government

Continuity & Resilience Review ◽

10.1108/crr-08-2020-0029 ◽

2020 ◽

Vol ahead-of-print (ahead-of-print) ◽

Author(s):

Mairead Grimley ◽

Kevin John Burnard

Keyword(s):

Decision Making ◽

Local Governments ◽

Online Survey ◽

Public Involvement ◽

Local Authority ◽

Single Case ◽

Secondary Data ◽

Structured Interviews ◽

Content Type

PurposeThis case study aims to explore the perceptions and attitudes towards risk within a UK local authority and the subsequent effects on decision-making. Through a qualitative analysis of both primary and secondary data, this study advances current understanding of the complex relationships between risk and decision-making. The study concludes by suggesting how local governments may better provide value to constituents.Design/methodology/approachThis research follows a single case study approach. Data were collected through both a focused online survey and semi-structured interviews. Respondents were selected through purposive sampling in order to capture direct insights and understanding of the concepts under consideration. The study focuses on a single local authority within the UK.FindingsBuilding on extant literature, this case study highlights both the individual and organisational considerations towards risk perception. Following the analysis of collected data, the study highlights the influence of risk aversion and public involvement within decision-making.Originality/valueBy aiming to improve and advance understanding of risk and decision-making in a local authority setting, the relevance of this research may be wider than internal organisational structures. The study provides recommendations for further research towards facilitating the inclusion of the citizen within decision-making processes.

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The Purpose and Types of Organizational Gossip

10.14267/phd.2021026 ◽

2021 ◽

Author(s):

◽

Boróka Tímea Pápay

Keyword(s):

Quantitative Methods ◽

Online Survey ◽

Graph Model ◽

Perceived Fairness ◽

Structured Interviews ◽

Speech Corpus ◽

Random Graph Model ◽

Pos Tagging ◽

Part Of Speech ◽

Triadic Relation

Gossip, one of the core human activities, enforces cooperation, and influences reputation. It is safe to assume that it is a more complex phenomenon than just having a cooperation-building function. Gossip can be linked to a wide variety of mechanisms that are relevant in small groups such as workplaces. The social structure behind gossip is a complex one where individual motivations; relationships between the sender, the receiver, and the target of the gossip; and organizational norms and contexts also play a role in its formation. The current dissertation conducts a thorough, mixed-method analysis of gossip on multiple analytical levels using novel, unique data sources. The questions of the analysis were the following: What are the motivations of the sender for gossiping? Is there a personal or financially driven envy as an explanation for negative gossip? Is perceived fairness and cooperation influencing gossip dynamics within an organization? Does gossip only circulate between the sender and receiver when they have a trusting relationship? What set of relationships between the sender, receiver, and target facilitate the sharing of gossip? How do these different sets of relationships lead to different social functions of gossip? How do gossip texts look structurally? How are the gossip triad members represented in a gossip speech, and what does that tell us about the gossip's intended purpose? What are the organizational determinants of gossip? How does perceived fairness and cohesiveness contribute to gossip in an organization? In the dissertation, we relied on two main datasets. The primary one was an online survey conducted with employees from multiple organizations, from 9 workgroups operating in different sectors, recording employee opinions and networks. Our second dataset was a unique, spontaneous speech corpus based on about 550 hours of audio recordings captured during a Hungarian entertainment program, transcribed, annotated, and validated by manual transcribers. The analysis uses quantitative methods such as descriptive statistics, probability theory; classification methods such as decision trees, hierarchical clustering; part-of-speech (POS) tagging; and social network analysis methods such as Exponential Random Graph Model or Triadic Relation Models. We also used qualitative methods as semi-structured interviews and gossip speech interpretation.

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VP63 National Institute For Health And Care Excellence (NICE) Technology Appraisal Patient Expert Feedback: 15 month analysis

International Journal of Technology Assessment in Health Care ◽

10.1017/s0266462317003403 ◽

2017 ◽

Vol 33 (S1) ◽

pp. 177-178

Author(s):

Chloe Kastoryano ◽

Lizzie Thomas ◽

Heidi Livingstone ◽

Gillian Leng

Keyword(s):

Online Survey ◽

Patient Involvement ◽

Public Involvement ◽

Appraisal Committee ◽

Technology Appraisal ◽

Committee Meeting ◽

The Public ◽

Formal Policy ◽

Quantitative Results ◽

Patient Expert

INTRODUCTION:The National Institute for Health and Care Excellence (NICE) has a formal policy stating patients, carers and citizens are involved throughout each Health Technology Assessment (HTA). One key way patient/carer organizations are involved is by nominating patient experts to participate in appraisal committee meetings.A NICE 2014 report (1) on Patient Experts experiences identified a need to routinely survey Patient Experts. This has been ongoing since October 2015. This study highlights key findings, including new recommendations and whether previous concerns have been addressed.METHODS:We refined the 2012 survey to be routinely sent to all patient experts that attended a NICE technology appraisal committee meeting. Between October 2015 and December 2016 this online survey was sent to eighty-eight patient experts. After analysis the findings were compared to the previous report to identify whether concerns have been addressed and whether new recommendations should be considered.RESULTS:There was a response rate of 47 percent (n = 41). Quantitative results and qualitative quotes demonstrate that patient experience varies widely. Key findings from the new data revealed that patient experts feel supported by the Public Involvement Programme, however would welcome more opportunities to speak. Notable improvements since 2012 include favourable opinions of support documents and the Chair more regularly introducing themselves to the patient expert before the meeting. Some experts still find the paperwork cumbersome and find the meetings very technical.CONCLUSIONS:Progress has been made since 2012, but further improvements could facilitate even more effective patient involvement. We continue to routinely measure experiences to identify and address evolving issues. Some tensions remain between NICE's remit and processes, and patients expectations of these. The findings, although specific to NICE, hopefully can feed into other patient involvement developments in the wider HTA ecosystem.

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SAFEGUARDING OLDER PEOPLE FROM FINANCIAL ABUSE: EXPERIENCES OF IRISH BANKS

Innovation in Aging ◽

10.1093/geroni/igz038.2132 ◽

2019 ◽

Vol 3 (Supplement_1) ◽

pp. S575-S575

Author(s):

Amanda A Phelan ◽

Deirdre O’Donnell ◽

Sandra McCarthy

Keyword(s):

Older People ◽

Online Survey ◽

Public Awareness ◽

Social Engineering ◽

Structured Interviews ◽

Undue Influence ◽

Financial Abuse ◽

Client Communication ◽

High Index Of Suspicion ◽

Older Populations

Abstract Financial abuse is a significant issue for older populations and was identified as that most common form of maltreatment in a 2010 Irish prevalence study (Naughton et al. 2010). This study examined how abuse was experienced and responded to by staff in five Irish banks. A mixed method approach was used: online survey (n=898) amd semi structured interviews (n=25) Findings from the survey data demonstrate that more than half of the respondents (66.5%) had previously suspected a customer to be experiencing some form of financial abuse. There was a high index of suspicion to the five scenarios presented to the staff. Findings from the interviews demonstrate the complexity and wide variations of case experiences of bank managers and the National Safeguarding Committee. These include being financially abused in the context of undue influence, scams, fraud and some cases described the naivety or potential naivety of some customers who may have capacity challenges, engage with strangers through social engineering scams, share PINs or open bank accounts without fully understanding the consequences. All staff had some experience of a suspicion of financial abuse in older people and employed various strategies to respond to their suspicions. We focused our recommendations in two areas: Bank level responses-inter-sectorial collaboration, education and training, a vulnerable adult champion, having a choice of banking methods of engagement, direct client communication and enhancements within the Central bank of Ireland. Macro level responses were increasing public awareness, raising the profile of financial abuse as a crime and enhancing safeguarding legislation

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Effects of Quarantine Due to the COVID-19 on Sleep Duration and Quality in Algerians

Acta Facultatis Educationis Physicae Universitatis Comenianae ◽

10.2478/afepuc-2020-0015 ◽

2020 ◽

Vol 60 (2) ◽

pp. 182-193

Author(s):

Kacem Abdelhadi ◽

Houar Abdelatif ◽

Zerf Mohamed ◽

Bengoua Ali

Keyword(s):

Statistical Analysis ◽

Sleep Quality ◽

Sleep Duration ◽

Online Survey ◽

Public Awareness ◽

Italian Version ◽

Sleep Timing ◽

Algerian Population ◽

Significant Change ◽

The Impact

SummaryThis study tests the impact of COVID-19 on sleep of Algerian population before and during the COVID-19 quarantine by an estimated online survey, adapted from the PSQI Italian version. Including 1210 participants (age between 18-60 years old). The statistical analysis was carried out using SPSS version 22.0 software. Our results showed a significant change in sleeping quality during quarantine, the sleep timing markedly changed, we also noticed additional use of sleeping medications. Algerian scientists recommend to build public awareness and to provide necessary information regarding Algerian sleep quality, especially for Algerian adults.

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Views about sensory modulation from people with schizophrenia and treating staff: A multisite qualitative study

British Journal of Occupational Therapy ◽

10.1177/0308022620988470 ◽

2021 ◽

pp. 030802262098847

Author(s):

Tawanda Machingura ◽

Chris Lloyd ◽

Karen Murphy ◽

Sarah Goulder ◽

David Shum ◽

...

Keyword(s):

Content Analysis ◽

Treatment Option ◽

Perceived Risk ◽

Quantitative Methods ◽

Qualitative Content Analysis ◽

Treatment Options ◽

Occupational Therapists ◽

Sensory Modulation ◽

Structured Interviews ◽

Effective Training

Introduction Current non-pharmacological treatment options for people with schizophrenia are limited. There is, however, emerging evidence that sensory modulation can be beneficial for this population. This study aimed to gain insight into sensory modulation from the user’s and the treating staff’s perspectives. Method A qualitative content analysis design was used. Transcripts from occupational therapists ( n=11) and patients with schizophrenia ( n=13) derived from in-depth semi-structured interviews were analysed for themes using content analysis. Results Five themes emerged from this study: Service user education on the sensory approach is the key; A variety of tools should be tried; Sensory modulation provides a valued treatment option; There are challenges of managing perceived risk at an organisational level; and There is a shortage of accessible and effective training. Conclusion People with schizophrenia and treating staff had congruent perceptions regarding the use of sensory modulation as a treatment option. The findings suggest that sensory modulation can be a valued addition to treatment options for people with schizophrenia. We suggest further research on sensory modulation intervention effectiveness using quantitative methods so these results can be further explored.

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Researcher perspectives on challenges and opportunities in conservation physiology revealed from an online survey

Conservation Physiology ◽

10.1093/conphys/coab030 ◽

2021 ◽

Vol 9 (1) ◽

Author(s):

Christine L Madliger ◽

Oliver P Love ◽

Vivian M Nguyen ◽

Neal R Haddaway ◽

Steven J Cooke

Keyword(s):

Online Survey ◽

Stakeholder Involvement ◽

Reference Ranges ◽

Conservation Science ◽

Policy And Practice ◽

Conservation Action ◽

Conservation Physiology ◽

Biodiversity Crisis ◽

Challenges And Opportunities ◽

Multi Stakeholder

Abstract Conservation physiology represents a recently emerging arm of conservation science that applies physiological tools and techniques to understand and solve conservation issues. While a multi-disciplinary toolbox can only help to address the global biodiversity crisis, any field can face challenges while becoming established, particularly highly applied disciplines that require multi-stakeholder involvement. Gaining first-hand knowledge of the challenges that conservation physiologists are facing can help characterize the current state of the field and build a better foundation for determining how it can grow. Through an online survey of 468 scientists working at the intersection of physiology and conservation, we aimed to identify characteristics of those engaging in conservation physiology research (e.g. demographics, primary taxa of study), gauge conservation physiology’s role in contributing to on-the-ground conservation action, identify the perceived barriers to achieving success and determine how difficult any identified barriers are to overcome. Despite all participants having experience combining physiology and conservation, only one-third considered themselves to be ‘conservation physiologists’. Moreover, there was a general perception that conservation physiology does not yet regularly lead to tangible conservation success. Respondents identified the recent conceptualization of the field and the broader issue of adequately translating science into management action as the primary reasons for these deficits. Other significant barriers that respondents have faced when integrating physiology and conservation science included a lack of funding, logistical constraints (e.g. sample sizes, obtaining permits) and a lack of physiological baseline data (i.e. reference ranges of a physiological metric’s ‘normal’ or pre-environmental change levels). We identified 12 actions based on suggestions of survey participants that we anticipate will help deconstruct the barriers and continue to develop a narrative of physiology that is relevant to conservation science, policy and practice.

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Leadership assumptions on implementation of patient involvement methods

BMC Health Services Research ◽

10.1186/s12913-021-06497-y ◽

2021 ◽

Vol 21 (1) ◽

Author(s):

Kathrine Håland Jeppesen ◽

Kirsten Frederiksen ◽

Marianne Johansson Joergensen ◽

Kirsten Beedholm

Keyword(s):

Health Care ◽

Organizational Learning ◽

Health Care Professionals ◽

Large Scale ◽

Patient Involvement ◽

Hospital Setting ◽

Implementation Process ◽

University Hospital ◽

Structured Interviews ◽

Implementation Processes

Abstract Background From 2014 to 17, a large-scale project, ‘The User-involving Hospital’, was implemented at a Danish university hospital. Research highlights leadership as crucial for the outcome of change processes in general and for implementation processes in particular. According to the theory on organizational learning by Agyris and Schön, successful change requires organizational learning. Argyris and Schön consider that the assumptions of involved participants play an important role in organizational learning and processes. The purpose was to explore leaders’ assumptions concerning implementation of patient involvement methods in a hospital setting. Methods Qualitative explorative interview study with the six top leaders in the implementation project. The semi-structured interviews were conducted and analyzed in accordance with Kvale and Brinkmanns’ seven stages of interview research. Result The main leadership assumptions on what is needed in the implementation process are in line with the perceived elements in organizational learning according to the theory of Argyris and Schön. Hence, they argued that implementation of patient involvement requires a culture change among health care professionals. Two aspects on how to obtain success in the implementation process were identified based on leadership assumptions: “The health care professionals’ roles in the implementation process” and “The leaders’ own roles in the implementation process”. Conclusion The top leaders considered implementation of patient involvement a change process that necessitates a change in culture with health care professionals as crucial actors. Furthermore, the top leaders considered themselves important facilitators of this implementation process.

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Service-user efforts to maintain their wellbeing during and after successful withdrawal from antipsychotic medication

Therapeutic Advances in Psychopharmacology ◽

10.1177/2045125321989133 ◽

2021 ◽

Vol 11 ◽

pp. 204512532198913

Author(s):

Miriam Larsen-Barr ◽

Fred Seymour

Keyword(s):

Antipsychotic Medication ◽

Online Survey ◽

Structured Interviews ◽

Obsessive Compulsive ◽

Convenience Sample ◽

Internal Resources ◽

Compulsive Disorder ◽

What Works ◽

Systemic Factors ◽

The Impact

Background: It is well-known that attempting antipsychotic withdrawal can be a fraught process, with a high risk of relapse that often leads people to resume the medication. Nonetheless, there is a group of people who appear to be able to discontinue successfully. Relatively little is known about how people do this. Methods: A convenience sample of adults who had stopped taking antipsychotic medication for more than a year were recruited to participate in semi-structured interviews through an anonymous online survey that investigated antipsychotic medication experiences in New Zealand. Thematic analysis explored participant descriptions of their efforts to maintain their wellbeing during and after the withdrawal process. Results: Of the seven women who volunteered to participate, six reported bipolar disorder diagnoses and one reported diagnoses of obsessive compulsive disorder and depression. The women reported successfully discontinuing antipsychotics for 1.25–25 years; six followed a gradual withdrawal method and had support to prepare for and manage this. Participants defined wellbeing in terms of their ability to manage the impact of any difficulties faced rather than their ability to prevent them entirely, and saw this as something that evolved over time. They described managing the process and maintaining their wellbeing afterwards by ‘understanding myself and my needs’, ‘finding what works for me’ and ‘connecting with support’. Sub-themes expand on the way in which they did this. For example, ‘finding what works for me’ included using a tool-box of strategies to flexibly meet their needs, practicing acceptance, drawing on persistence and curiosity and creating positive life experiences. Conclusion: This is a small, qualitative study and results should be interpreted with caution. This sample shows it is possible for people who experience mania and psychosis to successfully discontinue antipsychotics and safely manage the impact of any symptoms that emerge as a result of the withdrawal process or other life stressors that arise afterwards. Findings suggest internal resources and systemic factors play a role in the outcomes observed among people who attempt to stop taking antipsychotics and a preoccupation with avoiding relapse may be counterproductive to these efforts. Professionals can play a valuable role in facilitating change.

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ICT and sustainable tourism development: an innovative perspective

Journal of Hospitality and Tourism Technology ◽

10.1108/jhtt-12-2012-0034 ◽

2014 ◽

Vol 5 (1) ◽

pp. 2-16 ◽

Cited By ~ 29

Author(s):

Alisha Ali ◽

Andrew J. Frew

Keyword(s):

Technology Acceptance ◽

Online Survey ◽

Sustainable Tourism ◽

Structured Interviews ◽

Content Type ◽

Sustainable Tourism Development ◽

Stakeholder Relationships ◽

Tourism Product ◽

Electronic Distribution ◽

Information And Communication

Purpose – The aim of this research is to foreground information and communication technology (ICT) as an innovative approach for sustainable tourism (ST) development of destinations. ICT is the technology required for information processing which facilitates data processing, information sharing, communication, searching and selection. This paper concentrates on the Abernathy and Clark model and its usefulness in applying ICT as innovative in managing ST. Design/methodology/approach – An online survey was administered to destination managers and to eTourism experts. Destination managers were selected as they were identified as the person responsible for the overall management of a Destination Management Organisation. eTourism experts were identified as someone who possesses special expertise, knowledge and skills on ICT applications to tourism and offered expertise on which ranged from such areas as electronic distribution, recommender systems, user-generated content, online communities, mobile technology, technology acceptance, tourism networks and Web 2.0. This was followed by semi-structured interviews. Findings – These ICT tools were found to be innovative for information management and distribution for critical decision-making. Innovation was fostered through the use of ICT for ST by leading to a better understanding of the tourism product, monitoring, measuring and evaluating, forecasting trends, developing partnerships and engaging and supporting stakeholder relationships. ICT would provide novel ways of approaching marketing, energy monitoring, waste management, and communication for destinations. Originality/value – This research is important in demonstrating the value that technology can have to ST and further develops the work on tourism innovation theory.

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