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 The PPI Hawker: An innovative method for public involvement in health research

2019 ◽  
Author(s):  
Lidia Luna Puerta ◽  
Helen E. Smith
Keyword(s):  
Health Research ◽  
Public Involvement ◽  
Research Study ◽  
Local Population ◽  
Community Setting ◽  
Population Based ◽  
Population Based Study ◽  
Research Issues ◽  
The Public ◽  
Field Notes

Abstract Background: A universal challenge in Public Involvement (PPI) in health research is attracting a diversity of patients’ perspectives and experiences. In Singapore, including the public’s voice in research is in its infancy and different ways of involving the public have to be explored.Objective: To design a PPI initiative that enables members of the public to share their ideas and opinions about health research, and then to assess its feasibility in the Singaporean community.Study design: Building on the concept of the PPI Café we designed a PPI Hawker for Singapore. Observations and reflexive field notes were used to evaluate the PPI Hawker’s feasibility, acceptability and utility.Results: From three PPI hawkers we were able to engage 72 members of the public in discussions about a population-based research study for which the researchers wanted to better understand the public’s perspective on various aspects of research design. Three quarters of those approached agreed to participate, indicating the feasibility of this method. PPI participants came from the three major ethnic groups in Singapore and were broad in age, suggesting PPI Hawkers are easily accessible. The majority of participants were willing to discuss all of the questions posed by the researchers. 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.Discussion: 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.Conclusion: PPI Hawkers provide an opportunity for meaningful co-design and co-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.

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 Public involvement in research about environmental change and health: A case study

2019 ◽  
Vol 23 (2) ◽  
pp. 215-233 ◽  
Author(s):  
Kath Maguire ◽  
Ruth Garside ◽  
Jo Poland ◽  
Lora E Fleming ◽  
Ian Alcock ◽  
...  
Keyword(s):  
Environmental Change ◽  
Public Engagement ◽  
Health Research ◽  
Public Involvement ◽  
Research Projects ◽  
Short Term ◽  
Policy Makers ◽  
Research Issues ◽  
The Public

Involving and engaging the public are crucial for effective prioritisation, dissemination and implementation of research about the complex interactions between environments and health. Involvement is also important to funders and policy makers who often see it as vital for building trust and justifying the investment of public money. In public health research, ‘the public’ can seem an amorphous target for researchers to engage with, and the short-term nature of research projects can be a challenge. Technocratic and pedagogical approaches have frequently met with resistance, so public involvement needs to be seen in the context of a history which includes contested truths, power inequalities and political activism. It is therefore vital for researchers and policy makers, as well as public contributors, to share best practice and to explore the challenges encountered in public involvement and engagement. This article presents a theoretically informed case study of the contributions made by the Health and Environment Public Engagement Group to the work of the National Institute for Health Research (NIHR) Health Protection Research Unit in Environmental Change and Health (HPRU-ECH). We describe how Health and Environment Public Engagement Group has provided researchers in the HPRU-ECH with a vehicle to support access to public views on multiple aspects of the research work across three workshops, discussion of ongoing research issues at meetings and supporting dissemination to local government partners, as well as public representation on the HPRU-ECH Advisory Board. We conclude that institutional support for standing public involvement groups can provide conduits for connecting public with policy makers and academic institutions. This can enable public involvement and engagement, which would be difficult, if not impossible, to achieve in individual short-term and unconnected research projects.

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.

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.

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.

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.

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 Patient and public involvement and engagement: Practice case study with reflections and learnings from a small rural district general hospital

2021 ◽  
Vol 5 (2) ◽  
Author(s):  
Zoë A. Sheppard ◽  
Sarah Williams ◽  
Richard Lawson ◽  
Kim Appleby
Keyword(s):  
General Hospital ◽  
Public Involvement ◽  
District General Hospital ◽  
Patient And Public Involvement ◽  
Rural District ◽  
Relevant Research ◽  
The Public ◽  
Research Volunteers ◽  
Large Groups

The notion of patient and public involvement and engagement (PPIE) in research has been around for some time, and it is considered essential to ensure high-quality relevant research that is shared and that will make a difference. This case study of practice aims to share the PPIE practice from Dorset County Hospital NHS Foundation Trust, a small rural district general hospital. It describes the process of recruiting patients and members of the public as research volunteers, as well as the plethora of engagement and involvement activities with which they have been involved to date. This is followed by a reflection on the process and an overview of plans for the future, highlighting key challenges as well as learnings. A dedicated role to support/oversee PPIE activities is recommended to coordinate large groups of research volunteers, as well as to monitor the important impact of their input, which is considerable. Increasing diversity and access to under-served groups, and embedding the research volunteer role within the wider clinical research team, are also highlighted as fundamental challenges, as well as opportunities to make the most from this valuable resource. The case study of practice puts forward a recommendation to all research departments to embed PPIE in all of the work that they do.

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