scholarly journals Patient and public involvement in a UK National Institute for Health Research Programme Grant for Applied Research: experiences from the Chronic Headache Education and Self-management Study (CHESS)

2021 ◽  
Vol 22 ◽  
Author(s):  
Vivien Nichols ◽  
Gemma Pearce ◽  
David R Ellard ◽  
Simon Evans ◽  
Kirstie Haywood ◽  
...  
Keyword(s):  
Health Research ◽  
Chronic Headache ◽  
Public Involvement ◽  
Core Outcome Set ◽  
Patient And Public Involvement ◽  
Self Management ◽  
Core Outcome ◽  
The Public ◽  
Outcome Set ◽  
Programme Grant

Abstract Background: Patient and public involvement (PPI) plays a crucial role in ensuring research is carried out in conjunction with the people that it will impact upon. In this article, we present our experiences and reflections from working collaboratively with patients and public through the lifetime of an National Institute for Health Research (NIHR) programme grant; the Chronic Headache Education and Self-management Study (CHESS) which took place between 2015 and 2020. PPI over the course of CHESS: We worked closely with three leading UK migraine charities and a lay advisory group throughout the programme. We followed NIHR standards and used the Guidance for Reporting Involvement of Patients and the Public checklist. We consulted our PPI contacts using a variety of methods depending on the phase of the study and the nature of the request. This included emails, discussions, and face-to-face contact. PPI members contributed throughout the study in the programme development, in the grant application, ethics documentation, and trial oversight. During the feasibility study; in supporting the development of a classification interview for chronic headache by participating in a headache classification conference, assessing the relevance, and acceptability of patient-reported outcome measures by helping to analyse cognitive interview data, and testing the smartphone application making suggestions on how best to present the summary of data collected for participants. Due to PPI contribution, the content and duration of the study intervention were adapted and a Delphi study with consensus meeting developed a core outcome set for migraine studies. Conclusions: The involvement of the public and patients in CHESS has allowed us to shape its overall design, intervention development, and establish a core outcome set for future migraine studies. We have reflected on many learning points for the future application of PPI.

Involving Patients and the Public in E-Health Research

2009 ◽  
pp. 115-126
Author(s):  
John Powell ◽  
Natalie Armstrong
Keyword(s):  
Health Research ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Consumer Involvement ◽  
Self Management ◽  
The Public ◽  
Health Consumer ◽  
Consumer Perspective ◽  
Internet Based Intervention

This chapter deals with the principles and practice of patient and public involvement in e-health research, and discusses some of the issues raised. In the first part of this chapter, we discuss the problems of defining an “e-health consumer,” and discuss why, how and when to involve consumers in e-health research. We also set out principles to guide effective consumer involvement, and the benefits that this can bring in the e-health arena. In the second part of this chapter, we describe how consumers were successfully involved, through a variety of methods, in the development and evaluation of an Internet-based intervention to aid diabetes self-management. Patient and public involvement in research is not the same as undertaking research on patients or the public. It is about understanding, incorporating and benefiting from the relevant consumer perspective, at various levels, throughout the stages of a project.

scholarly journals The “PPI Hawker”: An innovative method for Patient and Public Involvement (PPI) in health research

2020 ◽  
Author(s):  
Lidia Luna Puerta ◽  
Helen E. Smith
Keyword(s):  
Health Research ◽  
Public Involvement ◽  
Research Study ◽  
Local Population ◽  
Community Setting ◽  
Patient And Public Involvement ◽  
Population Based ◽  
Research Issues ◽  
The Public ◽  
Field Notes

Abstract Background: Patient and Public Involvement (PPI) in health research entails doing research ‘with’ the public. Successful PPI requires a diversity of patients’ perspectives and experiences. In Singapore, including the public’s voice in research is still in its infancy and different ways of involving the public have to be explored. Our aims were to describe a PPI initiative that enables members of the public to share their ideas and opinions about health research, and to assess the feasibility, accessibility and utility of the initiative. Methods: Building on the concept of the PPI Café used in the west we designed a “PPI Hawker” for Singapore. Here Hawker Centres rather than cafes are used frequently for eating and socialising, providing a one-stop destination for a wide section of society. The PPI facilitators approached people sitting at tables and joined them to discuss questions of relevance to a local research study. Observations and reflexive field notes were used to evaluate the “PPI Hawker’s” feasibility, acceptability and utility in the Singaporean community. Results: In three “PPI Hawkers” we approached 96 people and 72 (75%) engaged in discussions about the design of a population-based research study. The majority (75%) of participants willingly discussed all of the questions posed to them by the researchers, indicating the feasibility of PPI. The PPI participants came from the three major ethnic groups in Singapore and appeared to be broad in age, suggesting “PPI Hawkers” are easily accessible. Both participants and researchers recognised the utility of the “PPI Hawker”, reflecting on people’s willingness to talk about the research issues, engaging in informative conversations and posing relevant questions. Conclusion: The “PPI Hawkers” succeeded in engaging the public in conversations about a local population-based study. The public brought to the researchers’ attention a variety of previously unheard perspectives about the research. Each event fostered connectivity between professionals and the public, generating among researchers a more positive perception of the power of public involvement. “PPI Hawkers” provide an opportunity for co-informed conduct of research studies with diverse members of the public. They create a focus within a community setting for researchers to engage with the public. The resources needed (costs and preparatory time) are relatively few. Not only do “PPI Hawkers” have potential in Singapore, but also for the rest of Asia.

scholarly journals Reporting on patient and public involvement (PPI) in research publications: using the GRIPP2 checklists with lay co-researchers

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Julia Jones ◽  
Marion Cowe ◽  
Sue Marks ◽  
Tony McAllister ◽  
Alex Mendoza ◽  
...  
Keyword(s):  
Health Research ◽  
Public Involvement ◽  
Short Form ◽  
Collaborative Study ◽  
Research Process ◽  
Patient And Public Involvement ◽  
Missed Opportunities ◽  
The Public ◽  
Research Publications ◽  
Health And Social Care

Abstract Background Patient and public involvement (PPI) in health and social care research is considered important internationally, with increasing evidence that PPI improves the quality, relevance and outcomes of research. There has been a growth in research publications that describe PPI in the research process, but the frequency and detail of PPI reporting varies considerably. This paper reports on a collaborative study that aimed to describe the extent of PPI in publications from research funded by the Collaboration for Leadership in Applied Health Research and Care (CLAHRC) in the East of England (EoE), part of the National Institute of Health Research (NIHR) in England (2014–2019). Methods A descriptive study of all research publications (1st January 2014 to 31st October 2017) funded by the NIHR CLAHRC EoE. Members of the Public Involvement in Research group (PIRg), at the University of Hertfordshire, were actively involved, with four PIRg co-researchers. We used an internationally recognised reporting checklist for PPI called the GRIPP2 (Guidance for Reporting Involvement of Patients and the Public, Version 2) to guide the reviewing process. Results Out of 148 research papers identified, 16 (14%) reported some aspect of PPI activity and were included for review. Ten of the publications (63%) acknowledged the contributions of PPI individuals and/or groups and five had PPI co-authors. There was considerable variation in the PPI reported in the publications, with some ‘missed opportunities’ to provide detail of PPI undertaken. The perspectives of the co-researchers shaped the reporting of the results from this study. The co-researchers found the GRIPP2-SF (short form) to be useful, but the GRIPP2-LF (long form) was considered over complicated and not user-friendly. Conclusions This is one of the first studies to involve lay co-researchers in the review of PPI reporting using the GRIPP2 reporting checklists (GRIPP2-SF and GRIPP2-LF). We make recommendations for a revised version of the GRIPP2-SF, with clearer instructions and three additional sections to record whether PPI is reported in the abstract or key words, in the acknowledgements section, and whether there are PPI co-authors. We also recommend the provision of training and support for patient and public peer reviewers.

What are Important Ways of Sharing Power in Health Research Priority Setting? Perspectives From People With Lived Experience and Members of the Public

2021 ◽  
pp. 155626462110132
Author(s):  
Bridget Pratt
Keyword(s):  
Lived Experience ◽  
Thematic Analysis ◽  
Priority Setting ◽  
Health Research ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
The Public ◽  
The United Kingdom ◽  
Research Priority ◽  
Health Research Priority Setting

Community engagement (patient and public involvement) is gaining prominence in health research worldwide. But there remains limited ethical guidance on how to share power with communities in health research priority setting, particularly that which has been informed by the perspectives of those being engaged. This article provides initial evidence about what they think are important ways to share power when setting health research projects’ topics and questions. Twenty-two people with lived experience, engagement practitioners, and members of the public who have been engaged in health research in the United Kingdom and Australia were interviewed. Thematic analysis identified 15 key ways to share power, many of which are relational. This study further demonstrates that tensions exist between certain ways of sharing power in health research priority setting. More research is needed to determine how to navigate those tensions.

Sahnan K, Tozer PJ, Adegbola SO, et al (2019) Developing a Core Outcome Set for Fistulising Perianal Crohn’s Disease Gut 68:226–38

2020 ◽  
Vol 14 (2) ◽  
pp. 100-101
Author(s):  
D. Bouchard ◽  
L. Tracanelli ◽  
F. Pigot
Keyword(s):  
Crohn’S Disease ◽  
Qualité De Vie ◽  
Maladie De Crohn ◽  
Core Outcome Set ◽  
Core Outcome ◽  
Perianal Crohn’S Disease ◽  
Revue De La Littérature ◽  
Outcome Set ◽  
Maladies Inflammatoires Intestinales ◽  
Perianal Crohn's Disease

Objectif : L’absence de standardisation des objectifs à atteindre par les traitements des fistules anopérinéales (FAP) de la maladie de Crohn limite les possibilités d’analyse et de comparaison des données issues des études disponibles. L’élaboration d’une liste standardisée d’objectifs à atteindre permettrait de résoudre ces problèmes. Cette étude valide la liste d’objectifs cruciaux (core outcome set [COS]) à atteindre pour le Crohn fistulisant. Méthode : Les objectifs susceptibles d’être retenus ont été définis par une revue de la littérature et des interviews de patients. La sélection consensuelle a été établie à l’issue d’un processus Delphi en trois étapes en évaluant sur une échelle de Likert en neuf points, l’importance que ces objectifs avaient pour définir la réussite d’un traitement. Des représentants de chacun des trois groupes impliqués dans ces traitements ont été recrutés à l’échelle nationale (chirurgiens et radiologistes, gastroentérologues et infirmières spécialisées en maladies inflammatoires intestinales, et enfin patients). Chaque intervenant a noté les différents objectifs possibles, puis a corrigé ses notes après avoir pris connaissance des autres notes données par les membres de son groupe (au deuxième tour) puis encore une fois après avoir pris connaissance des notations données par tous les participants (au troisième tour). Résultats : Au total, 295 objectifs potentiels ont été identifiés à partir d’une revue de la littérature et d’interviews, ils ont été catégorisés en 92 domaines. Cent quatre-vingt-sept participants (taux de réponse : 78,5 %) ont accordé la priorité à 49 objectifs à l’issue d’une méthode Delphi à trois cycles. Une réunion de consensus finale de 41 experts et patients s’est accordée sur un COS comprenant huit catégories d’objectifs. Ce COS comprenait trois catégories d’objectifs importants pour le patient (qualité de vie, incontinence et score combiné des priorités du patient) et cinq catégories d’objectifs retenus par les praticiens (activité de la maladie périanale, développement d’un nouvel abcès périanal, fistule nouvelle/récidivante, chirurgie non planifiée et dérivation fécale). Conclusion : Un COS sur les FAP de laMC a été élaboré par tous les acteurs clés de cette maladie. L’utilisation du COS diminuera l’hétérogénéité dans l’expression des résultats des traitements, ce qui rendra plus pertinente la comparaison des traitements entre eux, la synthèse des données et, en fin de compte, les soins rendus aux patients.

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