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 Moving through Motherhood: Involving the Public in Research to Inform Physical Activity Promotion throughout Pregnancy and Beyond

2021 ◽  
Vol 18 (9) ◽  
pp. 4482
Author(s):  
Victoria E. Salmon ◽  
Lauren R. Rodgers ◽  
Peter Rouse ◽  
Oli Williams ◽  
Emma Cockcroft ◽  
...  
Keyword(s):  
Physical Activity ◽  
Public Involvement ◽  
Service Providers ◽  
Physical Activity Promotion ◽  
Resource Development ◽  
Physical Activity Behaviour ◽  
Patient And Public Involvement ◽  
Lessons Learned ◽  
Activity Promotion ◽  
Development Outcomes

Information received by women regarding physical activity during and after pregnancy often lacks clarity and may be conflicting and confusing. Without clear, engaging, accessible guidance centred on the experiences of pregnancy and parenting, the benefits of physical activity can be lost. We describe a collaborative process to inform the design of evidence-based, user-centred physical activity resources which reflect diverse experiences of pregnancy and early parenthood. Two iterative, collaborative phases involving patient and public involvement (PPI) workshops, a scoping survey (n = 553) and stakeholder events engaged women and maternity, policy and physical activity stakeholders to inform pilot resource development. These activities shaped understanding of challenges experienced by maternity and physical activity service providers, pregnant women and new mothers in relation to supporting physical activity. Working collaboratively with women and stakeholders, we co-designed pilot resources and identified important considerations for future resource development. Outcomes and lessons learned from this process will inform further work to support physical activity during pregnancy and beyond, but also wider health research where such collaborative approaches are important. We hope that drawing on our experiences and sharing outcomes from this work provide useful information for researchers, healthcare professionals, policy makers and those involved in supporting physical activity behaviour.

scholarly journals Reaching consensus on reporting patient and public involvement (PPI) in research: methods and lessons learned from the development of reporting guidelines

BMJ Open ◽  
2017 ◽  
Vol 7 (10) ◽  
pp. e016948 ◽  
Author(s):  
Jo Brett ◽  
Sophie Staniszewska ◽  
Iveta Simera ◽  
Kate Seers ◽  
Carole Mockford ◽  
...  
Keyword(s):  
Public Involvement ◽  
Evidence Base ◽  
Patient And Public Involvement ◽  
Lessons Learned ◽  
Reporting Guidelines ◽  
Consensus Development ◽  
Face To Face ◽  
Three Phase ◽  
Health And Social Care ◽  
The Impact

IntroductionPatient and public involvement (PPI) is inconsistently reported in health and social care research. Improving the quality of how PPI is reported is critical in developing a higher quality evidence base to gain a better insight into the methods and impact of PPI. This paper describes the methods used to develop and gain consensus on guidelines for reporting PPI in research studies (updated version of the Guidance for Reporting Patient and Public Involvement (GRIPP2)).MethodsThere were three key stages in the development of GRIPP2: identification of key items for the guideline from systematic review evidence of the impact of PPI on health research and health services, a three-phase online Delphi survey with a diverse sample of experts in PPI to gain consensus on included items and a face-to-face consensus meeting to finalise and reach definitive agreement on GRIPP2. Challenges and lessons learnt during the development of the reporting guidelines are reported.DiscussionThe process of reaching consensus is vital within the development of guidelines and policy directions, although debate around how best to reach consensus is still needed. This paper discusses the critical stages of consensus development as applied to the development of consensus for GRIPP2 and discusses the benefits and challenges of consensus development.

scholarly journals Involving young people in drug and alcohol research

2018 ◽  
Vol 18 (1) ◽  
pp. 28-38 ◽  
Author(s):  
Louca-Mai Brady ◽  
Lorna Templeton ◽  
Paul Toner ◽  
Judith Watson ◽  
David Evans ◽  
...  
Keyword(s):  
Young People ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Advisory Group ◽  
Services Research ◽  
Apparent Contradiction ◽  
Content Type ◽  
Drug Problems ◽  
The Impact ◽  
Drug And Alcohol

Purpose Young people’s involvement should lead to research, and ultimately services, that better reflect young people’s priorities and concerns. Young people with a history of treatment for alcohol and/or drug problems were actively involved in the youth social behaviour and network therapy study. The purpose of this paper is to explore the impact of that involvement on the study and what was learnt about involving young people in drug and alcohol research. Design/methodology/approach The initial plan was to form a young people’s advisory group (YPAG), but when this proved problematic the study explored alternative approaches in collaboration with researchers and young people. Input from 17 young people informed all key elements of the study. Findings Involvement of young people needs to be dynamic and flexible, with sensitivity to their personal experiences. Engagement with services was crucial both in recruiting young people and supporting their ongoing engagement. This research identified a need to critically reflect on the extent to which rhetorics of participation and involvement give rise to effective and meaningful involvement for young service users. It also highlights the need for researchers to be more flexible in response to young people’s personal circumstances, particularly when those young people are “less frequently heard”. Research limitations/implications This research highlights the need for researchers to be more flexible in response to young people’s personal circumstances, particularly when those young people are “less frequently heard”. It highlights the danger of young people in drug and alcohol research being unintentionally disaffected from involvement through conventional approaches and instead suggests ways in which young people could be involved in influencing if and how they participate in research. Practical implications There is an apparent contradiction between dominant discourses and cultures of health services research (including patient and public involvement) that often do not sit easily with ideas of co-production and young people-centred involvement. This paper provides an alternative approach to involvement of young people that can help to enable more meaningful and effective involvement. Originality/value The flexible and young people-centred model for involvement which emerged from this work provides a template for a different approach. This may be particularly useful for those who find current practice, such as YPAG, inaccessible.

scholarly journals “A little (PPI) MAGIC can take you a long way” : involving children and young people in research from inception of a novel medical device to multi-centre clinical trial Roald Dahl, James and the Giant Peach (1961)

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Nichola Abrehart ◽  
◽  
Kate Frost ◽  
Roy Harris ◽  
Andrew Wragg ◽  
...  
Keyword(s):  
Young People ◽  
Medical Device ◽  
Public Involvement ◽  
Knowledge Exchange ◽  
Patient And Public Involvement ◽  
Advisory Group ◽  
Main Body ◽  
Research Project ◽  
Children And Young People ◽  
Conducting Research

Abstract Background There is often a great urgency to be inclusive when conducting research and to focus efforts with groups and communities that can be referred to as marginalised. This is especially the case in research concerning medical devices aimed at children and young people (CYP). Although involvement methodology has developed over the last two decades, it can be challenging to involve and engage CYP with confidence and clarity of purpose. Main body Our aim was to provide a reflective narrative account of the involvement of CYP, over a period of 5 years, in a research project from conception of a new paediatric medical device through to practical application. We explored a model of patient and public involvement (PPI) through the Nottingham Young Persons Advisory Group (YPAG), part of the National Institute for Health Research (NIHR) GenerationR Alliance, in a NIHR funded research project. The YPAG designed and created a model of the human gut, co-designed the Transicap™ mini-capsules and their packaging, co-produced patient information sheets, came up with the idea to disseminate through a project website and co-wrote and created animation videos. The YPAG involvement continued through the writing and award of the follow-on research grant (MAGIC2). During this process the YPAG modified the clinical study protocol insisting that all participants in the control arm were given the imaging test results as well, save for a delayed reading compared to the intervention arm. Conclusion Involvement of the YPAG over the last 5 years, led to the development of a mutually beneficial partnership, enabling genuine knowledge exchange between researchers and CYP. This influenced the design, plans and actions of the MAGIC study and well into the subsequent MAGIC2 follow-on project. Moreover, these involvement models applied within a feasibility study setting, have enhanced the realism and pragmatism of the study, contributing to the project’s overall success.

scholarly journals Patient and Public Involvement in Youth Mental Health Research: Protocol for a Systematic Review of Practices and Impact

2021 ◽  
Vol 12 ◽  
Author(s):  
Célia M. D. Sales ◽  
Filipa Martins ◽  
Marisa M. Alves ◽  
Sara Carletto ◽  
Sonia Conejo-Cerón ◽  
...  
Keyword(s):  
Mental Health ◽  
Young People ◽  
Systematic Reviews ◽  
Health Research ◽  
Public Involvement ◽  
Relevant Information ◽  
Patient And Public Involvement ◽  
Mental Health Research ◽  
Children And Young People ◽  
Meta Analyses

Various health settings have advocated for involving patients and members of the public (PPI) in research as a means to increase quality and relevance of the produced knowledge. However, youth PPI has been an understudied area. This protocol paper describes a new project that aims to summarize what is known about PPI with young people in mental health research. In line with the Preferred Reporting Items for Systematic reviews and Meta-Analyses Statement guidelines we will identify and appraise suitable articles and extract and synthesize relevant information including at least two reviewers at each stage of the process. Results will be presented in two systematic reviews that will describe (a) how youth PPI has been conducted (Review1) and (b) what impact youth PPI had on the subsequent research and on stakeholders (Review2). To our knowledge, this is the first set of reviews that uses a critical appraisal tool, which is co-developed with children and young people. Findings from this project will provide valuable insights and set out the key steps to adopting adequate PPI methods when involving children and young people in mental health research.

OP338 Involving Patients In Research: Early Consultation Of Women To Improve Study Design And Investigate Trial Acceptability

2021 ◽  
Vol 37 (S1) ◽  
pp. 14-14
Author(s):  
Jamie Erskine ◽  
Alejandra Castanon
Keyword(s):  
Data Collection ◽  
Clinical Research ◽  
Feasibility Study ◽  
Public Involvement ◽  
Research Output ◽  
Patient And Public Involvement ◽  
English Summary ◽  
Ongoing Research ◽  
Consultation Group ◽  
Funding Application

IntroductionGaining the perspective of patients is invaluable in the design, management and reporting of research. As part of the process of facilitating clinical research into the effectiveness of a digital colposcope in a cervical cancer pathway, patients were involved from the outset.MethodsUsing funding made available by a Public Involvement Fund, a patient consultation group was established. The group's initial discussions informed the design of a feasibility study and funding application, which was submitted to the UK National Institute of Health Research (NIHR). A Patient and Public Involvement (PPI) representative was recruited and along with the consultation group, contributed to the ethical approvals for the study. The Patient Information Sheet and Consent Form were reviewed by the patients, to ensure readability, understandability and accessibility. The patient questionnaires and interview topics that are part of the feasibility study were also developed in conjunction with the PPI group, to make sure that women's concerns are being addressed in the research design and protocols.ResultsThe PPI consultation group's contributions helped strengthen the funding application and funding for a feasibility study was granted as part of the NIHR's Research for Patient Benefit funding scheme. Part of the grant will be used for training and reimbursement for time spent for the PPI representative. Data collection for the study is due to commence in the summer of 2021. The PPI group will be consulted at the beginning and end of the data collection period and will contribute to the data analysis and dissemination of the research output, including a Plain English Summary.ConclusionsInvolving patients greatly amplified the quality of the funding and ethical applications and will continue to benefit the ongoing research. Resources were widely available within the researcher's University and also through UK-wide schemes. Such resources are crucial and should be encouraged as part of all clinical research.

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