scholarly journals Patient and public involvement in a study of multimedia clinical trial information for children, young people and families

2020 ◽  
Vol 4 (1) ◽  
pp. 47-65
Author(s):  
Rebecca Sheridan ◽  
Jennifer Preston ◽  
Simon R Stones ◽  
Sammy Ainsworth ◽  
Danielle Horton Taylor ◽  
...  
Keyword(s):  
Young People ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Future Research ◽  
Research Practice ◽  
The Public ◽  
Specific Input ◽  
The People ◽  
Clinical Trial Information

There is increasing recognition of the need to involve the public in health research, but accounts of how best to achieve this are scarce. This article describes public involvement in the TRials Engagement in Children and Adolescents (TRECA) study, which is developing and evaluating multimedia information resources to inform children, young people and their familes about clinical trials. A dedicated group of young people with long-term health conditions and their parents met regularly throughout the study; further involvement was sought when specific input was required. Review of formal impact records and informal discussions highlighted how public involvement can positively influence research practice and the people involved. By detailing the methods of involvement used, this work also provides guidance for successfully implementing public involvement in research, and highlights challenges that should be considered in future research projects.

How to improve diversity in patient and public involvement

2021 ◽  
pp. 1-8
Author(s):  
Rebecca Golenya ◽  
George D Chloros ◽  
Michalis Panteli ◽  
Peter V Giannoudis ◽  
Anthony Howard
Keyword(s):  
Lived Experiences ◽  
Public Involvement ◽  
Healthcare Professionals ◽  
Patient And Public Involvement ◽  
Future Research ◽  
Barriers To Participation ◽  
The Public ◽  
Common Barriers ◽  
Quality Of Research

Patient and public involvement involves ascertaining the opinions of and collaborating with patients and members of the public to holistically improve the quality of research. Patient and public involvement provides patients with a platform to use and share their lived experiences. This allows healthcare professionals to gain a deeper appreciation of the patient's perspective, which enables future research to be more patient centred and tailored to patients' requirements. Patient and public involvement aims to broadly encapsulate the opinions of the public, so ensuring diversity is recommended. This article provides a practical framework to increase diversity and engage hard-to-reach demographics in patient and public involvement. It highlights some common barriers to participation and methods for overcoming this, describes sampling frameworks and provides examples of how these have been adopted in practice.

scholarly journals THE STUDY OF AGING A SEARCH FOR MEANINGFUL PATIENT AND PUBLIC INVOLVEMENT IN GERONTOLOGICAL QUALITATIVE DATA ANALYSIS

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S802-S803
Author(s):  
Barbara Hanratty ◽  
Rachel Stocker ◽  
Katie Brittain
Keyword(s):  
Data Analysis ◽  
Research Team ◽  
Qualitative Data ◽  
Public Involvement ◽  
Long Term Care ◽  
Patient And Public Involvement ◽  
Term Care ◽  
The Public ◽  
Care Research

Abstract Patients and the public are involved in health and social care research more than ever before. Much effort has been put into developing patient and public involvement (PPI), and promoting co-production of research with patients and the public. Yet there is little guidance for researchers on how to involve PPI partners in the research process, or how involvement can be judged as meaningful. This presentation has its origins in the attempts of one research team to question and navigate a way of involving PPI in long term care research. In this presentation, we describe our model of collaborative qualitative data analysis with PPI partners, in a study exploring primary care services for older adults living in long-term care facilities in England. Anonymised interview transcript excerpts were presented in written, audio, and role-play format to our PPI partners. PPI partners derived meaning from interview data, identifying, confirming and critiquing emerging themes. Their input at this critical stage of the study deepened our initial analysis and prompted the research team to new and different interpretations of the data. This talk addresses ways of engaging PPI partners in innovative ways during data analysis, and offers other researchers some questions, challenges and potential principles for effective practice. We conclude that in areas such as long term care, with multiple stakeholders and a dynamic environment, effective PPI may be flexible, messy and difficult to define.

scholarly journals Patient and public involvement in numerical aspects of trials: a mixed methods theory-informed survey of trialists’ current practices, barriers and facilitators

BMJ Open ◽  
2021 ◽  
Vol 11 (3) ◽  
pp. e046977
Author(s):  
Beatriz Goulao ◽  
Camille Poisson ◽  
Katie Gillies
Keyword(s):  
Mixed Methods ◽  
Online Survey ◽  
Public Involvement ◽  
Theoretical Domains Framework ◽  
Patient And Public Involvement ◽  
Barriers And Facilitators ◽  
Future Research ◽  
Mixed Methods Approach ◽  
Scarce Resources ◽  
The Public

ObjectiveWe aimed to find out if trialists involve patients and the public in numerical aspects of trials, how and what are the barriers and facilitators to doing it.DesignWe developed a survey based on the Theoretical Domains Framework. We used a mixed methods approach to analyse the data and to identify important domains.SettingOnline survey targeting UK-based trial units.ParticipantsStakeholders working in UK-based clinical trials, 18 years old or over, understand English and agree to take part in the study.Outcome measuresTrialists’ behaviour of involving patients and the public in numerical aspects of trials and its determinants.ResultsWe included 187 respondents. Majority were female (70%), trial managers (67%) and involved public and patient partners in numerical aspects of trials (60%). We found lack of knowledge, trialists’ perception of public and patient partners’ skills, capabilities and motivations, scarce resources, lack of reinforcement, and lack of guidance were barriers to involving public and patient partners in numerical aspects of trials. Positive beliefs about consequences were an incentive to doing it.ConclusionsMore training, guidance and funding can help trialists involve patient and public partners in numerical aspects, although they were uncertain about public and patient partners’ motivation to be involved. Future research should focus on identifying public and patient partners’ motivations and develop strategies to improve the communication of numerical aspects.

scholarly journals Contextual Influences on the Perception of Bullying Behaviours for Youth in New Zealand

2021 ◽  
Author(s):  
◽  
Jennifer Sian Jeffrey
Keyword(s):  
New Zealand ◽  
Young People ◽  
Structured Interview ◽  
Future Research ◽  
Contextual Influences ◽  
The Public ◽  
Different Types ◽  
Short And Long Term

<p>Bullying has gained a lot of attention in the public and academic spheres over the past two decades (Carrera, DePalma, & Lameiras, 2011; Monks et al., 2009) and is considered to be a very serious international issue (Due et al., 2005; Mullis, Martin, Foy, & Arora, 2012). There is extensive research based on the experiences of bullying, which has examined prevalence rates (Green, Harcourt, Mattioni, & Prior, 2013), distinctions between different types of bullying (Rivers & Smith, 1994; Smokowski & Kopasz, 2005) as well as the short and long term impacts (Coggan, Bennett, Hooper, & Dickinson, 2003). Through this, a strong research based understanding of bullying has been developed and a consistent definition established (Canty, Stubbe, Steers, & Collings, 2014; Carroll-Lind, 2009). However, previous research has primarily focused on the experiences of bullying, and few studies have examined how bullying is understood from the perspectives of young people. The present study aimed to bridge this gap by exploring young people’s understanding of bullying behaviour in New Zealand. Twenty participants completed a short questionnaire and structured interview, where they discussed four hypothetical scenarios, each describing a different type of bullying in a different setting. Results demonstrated that young people maintain a much broader conception of bullying than what is currently defined by academia. The academic criteria of intention to harm, repetition and an imbalance of power were not central to young people’s definitions of bullying. Rather, factors such as, the reaction of the victim, how public the behaviour was and the role of friendship were more instrumental in shaping young people’s bullying perceptions and definitions. Furthermore, it was found that the perceived relationship between bullies, victims and bystanders as well as gender differences, also influenced participants’ understanding of bullying behaviours. These findings yield important implications for the development and efficacy of intervention programs. Limitations and avenues of future research are also discussed.</p>

scholarly journals Patient and public involvement in numerical aspects of trials (PoINT): exploring patient and public partners experiences and identifying stakeholder priorities

Trials ◽  
2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Beatriz Goulao ◽  
Hanne Bruhn ◽  
Marion Campbell ◽  
Craig Ramsay ◽  
Katie Gillies
Keyword(s):  
Focus Groups ◽  
Priority Setting ◽  
Quantitative Research ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Future Research ◽  
The Public ◽  
James Lind Alliance ◽  
Communication Needs ◽  
Level Of Understanding

Abstract Background and aims Patient and public involvement is increasingly common in trials, but its quality remains variable in a lot of settings. Many key decisions in trials involve numbers, but patients are rarely involved in those discussions. We aimed to understand patient and public partners’ experiences and opinions regarding their involvement in numerical aspects of research and discuss and identify priorities, according to multiple stakeholders, around the most important numerical aspects in trials to involve patients and the public in. Methods The study had two stages: (1) online focus groups with patient and public partners recruited via online platforms and analysed using inductive thematic analysis and (2) online priority setting meeting with UK- and Ireland-based stakeholders and following James Lind Alliance methodology. Pre-selected numerical aspects were introduced prior to the meeting and discussed and prioritised based on a voting system. Results In stage 1, we held two focus groups with patient and public partners (n = 9). We identified four themes in the analysis: “Determinants of PPI in numerical aspects”, “Identity and roles”, “Impact of involving patients and the public in numerical aspects”. Patient and public partners believed being involved in numerical aspects of research is important and should be facilitated, but communication about these aspects needs to be clearer. An environment and relationship with researchers that facilitates that will include time for discussion, support to improve knowledge and confidence, clear language and definitions and trust. Patient and public partners perceive their role as bringing an outsider perspective and were mainly interested in involvement in assumptions and dissemination of quantitative research. They believed this can lead to more transparency and improve their experience by making involvement more meaningful. In stage 2, we identified twelve numerical aspects of trials to be prioritised. We held a priority setting meeting with 14 stakeholders, which led to the selection of three priority numerical aspects in patient and public involvement: target differences, interpretation of results and cost-effectiveness. Participants felt all aspects should be considered for involvement and their communication needs to ensure a shared level of understanding to avoid power imbalances. Conclusions Our work shows the importance of involving patient and public partners in numerical aspects of trials by assessing their experiences and motivations for the first time and discussing and prioritising which numerical aspects of trials are the most important for patients and the public to contribute to. Our research provides a platform for future efforts to improve patient and public involvement in trials and a prioritised set of future research foci.

scholarly journals Contextual Influences on the Perception of Bullying Behaviours for Youth in New Zealand

2021 ◽  
Author(s):  
◽  
Jennifer Sian Jeffrey
Keyword(s):  
New Zealand ◽  
Young People ◽  
Structured Interview ◽  
Future Research ◽  
Contextual Influences ◽  
The Public ◽  
Different Types ◽  
Short And Long Term

<p>Bullying has gained a lot of attention in the public and academic spheres over the past two decades (Carrera, DePalma, & Lameiras, 2011; Monks et al., 2009) and is considered to be a very serious international issue (Due et al., 2005; Mullis, Martin, Foy, & Arora, 2012). There is extensive research based on the experiences of bullying, which has examined prevalence rates (Green, Harcourt, Mattioni, & Prior, 2013), distinctions between different types of bullying (Rivers & Smith, 1994; Smokowski & Kopasz, 2005) as well as the short and long term impacts (Coggan, Bennett, Hooper, & Dickinson, 2003). Through this, a strong research based understanding of bullying has been developed and a consistent definition established (Canty, Stubbe, Steers, & Collings, 2014; Carroll-Lind, 2009). However, previous research has primarily focused on the experiences of bullying, and few studies have examined how bullying is understood from the perspectives of young people. The present study aimed to bridge this gap by exploring young people’s understanding of bullying behaviour in New Zealand. Twenty participants completed a short questionnaire and structured interview, where they discussed four hypothetical scenarios, each describing a different type of bullying in a different setting. Results demonstrated that young people maintain a much broader conception of bullying than what is currently defined by academia. The academic criteria of intention to harm, repetition and an imbalance of power were not central to young people’s definitions of bullying. Rather, factors such as, the reaction of the victim, how public the behaviour was and the role of friendship were more instrumental in shaping young people’s bullying perceptions and definitions. Furthermore, it was found that the perceived relationship between bullies, victims and bystanders as well as gender differences, also influenced participants’ understanding of bullying behaviours. These findings yield important implications for the development and efficacy of intervention programs. Limitations and avenues of future research are also discussed.</p>

scholarly journals Patient and public involvement of young people with a chronic condition: lessons learned and practical tips from a large participatory program

2020 ◽  
Vol 6 (1) ◽  
Author(s):  
Femke van Schelven ◽  
Eline van der Meulen ◽  
Noortje Kroeze ◽  
Marjolijn Ketelaar ◽  
Hennie Boeije
Keyword(s):  
Young People ◽  
Chronic Condition ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
English Summary ◽  
Lessons Learned ◽  
Project Teams ◽  
Data Sources ◽  
Future Prospects ◽  
Roles And Responsibilities

Plain English summary Background Young people with a chronic condition are increasingly involved in doing research and developing tools and interventions that concern them. Working together with patients is called Patient and Public Involvement (PPI). We know from the literature that PPI with young people with a chronic condition can be challenging. Therefore, it is important that everyone shares their lessons learned from doing PPI. Aim We want to share our lessons learned from a large program, called Care and Future Prospects. This program helps young people with a chronic condition to, for example, go to school or to find a job. It funded numerous projects that could contribute to this. In all projects, project teams collaborated with young people with a chronic condition. What did we do We asked young people with a chronic condition and project teams about their experiences with PPI. Project teams wrote reports, were interviewed, and filled out a tool called the Involvement Matrix. Young people filled out a questionnaire. Findings In the article, we present our lessons learned. Examples are: it is important to involve young people with a chronic condition from the start of a project and everyone involved in a project should continuously discuss their responsibilities. We provide practical tips on how young people with a chronic condition and project teams can do this. A tip for young people is, for example: ‘discuss with the project team what you can and want to do and what you need’. An example of a tip for project teams is: ‘Take time to listen attentively to the ideas of young people’. Abstract Background The Patient and Public Involvement (PPI) of young people with a chronic condition receives increasing attention in policy and practice. This is, however, not without its challenges. Consequently, calls have been made to share lessons learned during PPI practice. Methods We share our lessons learned from a large participatory program, called Care and Future Prospects. This program aims to improve the social position of young people aged 0–25 with a physical or mental chronic condition by funding participatory projects. We have drawn our lessons from 33 of these projects, using four data sources. One data source provided information from the perspective of young people with a chronic condition, i.e. questionnaires. Three data sources contained information from the perspectives of project teams, i.e. project reports, case studies of projects and Involvement Matrices. For most of the projects, we have information from multiple data sources. Results We have combined the findings derived from all four data sources. This resulted in multiple lessons learned about PPI with young people with a chronic condition. Those lessons are divided into six themes, including practicalities to take into account at the start, involvement from the start, roles and responsibilities, support, flexibility and an open mind, and evaluation of process and outcomes. Conclusions The lessons learned have taught us that meaningful PPI requires effort, time and resources from both young people and project teams, from the beginning to the end. It is important to continuously discuss roles and responsibilities, and whether these still meet everyone’s needs and wishes. Our study adds to previous research by providing practical examples of encountered challenges and how to deal with them. Moreover, the practical tips can be a valuable aid by showing young people and project teams what concrete actions can support a successful PPI process.

scholarly journals ‘Give Us The Tools!’: development of knowledge transfer tools to support the involvement of patient partners in the development of clinical trial protocols with patient-reported outcomes (PROs), in accordance with SPIRIT-PRO Extension

BMJ Open ◽  
2021 ◽  
Vol 11 (6) ◽  
pp. e046450
Author(s):  
Samantha Cruz Rivera ◽  
Richard Stephens ◽  
Rebecca Mercieca-Bebber ◽  
Ameeta Retzer ◽  
Claudia Rutherford ◽  
...  
Keyword(s):  
Clinical Trial ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Patient Reported Outcome ◽  
Flow Diagram ◽  
Additional Patient ◽  
The Public ◽  
Patient Reported ◽  
Trial Protocols ◽  
User Friendly

Objectives(a) To adapt the Standard Protocol Items: Recommendations for Interventional Trials (SPIRIT)-patient-reported outcome (PRO) Extension guidance to a user-friendly format for patient partners and (b) to codesign a web-based tool to support the dissemination and uptake of the SPIRIT-PRO Extension by patient partners.DesignA 1-day patient and public involvement session.ParticipantsSeven patient partners.MethodsA patient partner produced an initial lay summary of the SPIRIT-PRO guideline and a glossary. We held a 1-day PPI session in November 2019 at the University of Birmingham. Five patient partners discussed the draft lay summary, agreed on the final wording, codesigned and agreed the final content for both tools. Two additional patient partners were involved in writing the manuscript. The study compiled with INVOLVE guidelines and was reported according to the Guidance for Reporting Involvement of Patients and the Public 2 checklist.ResultsTwo user-friendly tools were developed to help patients and members of the public be involved in the codesign of clinical trials collecting PROs. The first tool presents a lay version of the SPIRIT-PRO Extension guidance. The second depicts the most relevant points, identified by the patient partners, of the guidance through an interactive flow diagram.ConclusionsThese tools have the potential to support the involvement of patient partners in making informed contributions to the development of PRO aspects of clinical trial protocols, in accordance with the SPIRIT-PRO Extension guidelines. The involvement of patient partners ensured the tools focused on issues most relevant to them.

Conclusion: What academia can contribute to refugee policy

2018 ◽  
Vol 56 (1) ◽  
pp. 146-151 ◽  
Author(s):  
Idean Salehyan
Keyword(s):  
Academic Research ◽  
Forced Migration ◽  
Humanitarian Assistance ◽  
Future Research ◽  
Security Risks ◽  
Individual Level ◽  
The Public ◽  
Level Data ◽  
Potential Risks

This conclusion to the special issue highlights the role of scholars in advancing the public discussion about forced migration. As countries around the world are adopting increasing restrictions on the entry of refugees, academic research can help to dispel some of the myths and apprehensions regarding the risks that forced migration entails. While refugees may be linked to conflict and violence in limited circumstances, the research generally demonstrates that robust international cooperation to manage refugee settlements, provide adequate humanitarian assistance, and integrate refugees into host communities, among other policies, can help to mitigate potential risks. Directions for future research and analysis are also discussed. Forced migration scholars should endeavor to collect more individual-level data; seek to understand factors that exacerbate or reduce security risks associated with cross-border militancy; conduct research on the long-term integration of refugees; and seek to understand the causes and consequences of resettlement and repatriation policies.

scholarly journals Economic cost of congenital CMV in the UK

2018 ◽  
Vol 104 (6) ◽  
pp. 559-563 ◽  
Author(s):  
Jenny Retzler ◽  
Nick Hex ◽  
Chris Bartlett ◽  
Anne Webb ◽  
Sharon Wood ◽  
...  
Keyword(s):  
Public Sector ◽  
Vaccine Development ◽  
Cost Model ◽  
Financial Burden ◽  
Secondary Data ◽  
Economic Cost ◽  
Future Research ◽  
The Public ◽  
The Uk

ObjectiveCongenital cytomegalovirus (cCMV) is the most common infectious cause of congenital disability. It can disrupt neurodevelopment, causing lifelong impairments including sensorineural hearing loss and developmental delay. This study aimed, for the first time, to estimate the annual economic burden of managing cCMV and its sequelae in the UK.DesignThe study collated available secondary data to develop a static cost model.SettingThe model aimed to estimate costs of cCMV in the UK for the year 2016.PatientsIndividuals of all ages with cCMV.Main outcome measuresDirect (incurred by the public sector) and indirect (incurred personally or by society) costs associated with management of cCMV and its sequelae.ResultsThe model estimated that the total cost of cCMV to the UK in 2016 was £732 million (lower and upper estimates were between £495 and £942 million). Approximately 40% of the costs were directly incurred by the public sector, with the remaining 60% being indirect costs, including lost productivity. Long-term impairments caused by the virus had a higher financial burden than the acute management of cCMV.ConclusionsThe cost of cCMV is substantial, predominantly stemming from long-term impairments. Costs should be compared against investment in educational strategies and vaccine development programmes that aim to prevent virus transmission, as well as the value of introducing universal screening for cCMV to both increase detection of children who would benefit from treatment, and to build a more robust evidence base for future research.

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