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

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.

Download Full-text

Involving public and patients in research

Bulletin of The Royal College of Surgeons of England ◽

10.1308/147363514x13964537912088 ◽

2014 ◽

Vol 96 (5) ◽

pp. 148-149 ◽

Cited By ~ 1

Author(s):

V Kasivisvanathan ◽

Kate Williams

Keyword(s):

Health Research ◽

Public Involvement ◽

Social Care ◽

Research Process ◽

Patient And Public Involvement ◽

Care Services ◽

Health And Social Care

What does patient and public involvement (PPI) in research mean? The National Institute for Health Research (NIHR) defines ‘patient and public’ as patients, potential patients, their carers, people who use health and social care services, and organisations that represent people who use these services. 1 The term ‘involvement’ refers to an active partnership between patients and public and researchers in the research process.

Download Full-text

A design-led framework for engaged research: Using a design approach to understand and place the public at the core of health and social care

Administration ◽

10.2478/admin-2021-0018 ◽

2021 ◽

Vol 69 (3) ◽

pp. 1-18

Author(s):

Mary Galvin ◽

Avril Kennan ◽

Éidín Ní Shé

Keyword(s):

Health Research ◽

Social Care ◽

Social Research ◽

Research Process ◽

The Public ◽

Umbrella Organisation ◽

Health And Social Care ◽

Academic Partner ◽

New Policies

Abstract This paper offers a multi-perspective approach on the role of engaged research in health and social care. Each of the authors focuses on their individual experiences of this domain, from the perspective of an academic partner of the Health Research Board’s PPI Ignite programme, a CEO of an umbrella organisation for health research charities and a researcher in design innovation, focusing on health research. The paper outlines the values which underpin public and patient involvement, as well as examples of its application as engaged research. It details how organisations like Health Research Charities Ireland support and enable engaged research within health and social research and policy. This paper offers a framework for facilitating dialogue and response across all stakeholders in the engaged research process, illustrating the importance of engaged research and how we can further our understanding and application of it within health and social care policy by adopting a design-led approach. We argue that a design-led approach can both facilitate engaged research as well as support policymakers in the design of new policies and practices.

Download Full-text

Blowin’ in the wind: The involvement of people who use services, carers and the public in health and social care

Dismantling the NHS? ◽

10.1332/policypress/9781447330226.003.0015 ◽

2016 ◽

Author(s):

Karen Newbigging

Keyword(s):

Public Involvement ◽

Social Care ◽

Patient And Public Involvement ◽

Democratic Deficit ◽

The Public ◽

Health And Social Care ◽

Rapid Diversification

Patient and public involvement (PPI) is often framed in terms of addressing the democratic deficit in the NHS but in England, since 2000, it has become increasingly aligned with the reform of the NHS to become patient centred by enabling people to exercise choice as a right and responsibility across all aspects of healthcare. Since then, there has been a rapid diversification of approaches to and methods for PPI, which experienced organisational turbulence under the Labour administration. This chapter discusses the evolution of PPI in England before 2010, and it examines the Coalition’s reforms of PPI, and the implications of these reforms.

Download Full-text

Patient and Public Involvement in Sexual and Reproductive Health: Time to Properly Integrate Citizen’s Input into Science

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph17218048 ◽

2020 ◽

Vol 17 (21) ◽

pp. 8048

Author(s):

Miguel García-Martín ◽

Carmen Amezcua-Prieto ◽

Bassel H Al Wattar ◽

Jan Stener Jørgensen ◽

Aurora Bueno-Cavanillas ◽

...

Keyword(s):

Reproductive Health ◽

Health Research ◽

Sexual And Reproductive Health ◽

Public Involvement ◽

Research Process ◽

Patient And Public Involvement ◽

Research Subjects ◽

Societal Benefits ◽

Participation Of Women ◽

Quality Tools

Evidence-based sexual and reproductive health is a global endeavor without borders. Inter-sectorial collaboration is essential for identifying and addressing gaps in evidence. Health research funders and regulators are promoting patient and public involvement in research, but there is a lack of quality tools for involving patients. Partnerships with patients are necessary to produce and promote robust, relevant and timely research. Without the active participation of women as stakeholders, not just as research subjects, the societal benefits of research cannot be realized. Creating and developing platforms and opportunities for public involvement in sexual and reproductive health research should be a key international objective. Cooperation between healthcare professionals, academic institutions and the community is essential to promote quality research and significant developments in women’s health. This cooperation will be improved when involvement of citizens in the research process becomes standard.

Download Full-text

Frequency of reporting on patient and public involvement (PPI) in research studies published in a general medical journal: a descriptive study

BMJ Open ◽

10.1136/bmjopen-2017-020452 ◽

2018 ◽

Vol 8 (3) ◽

pp. e020452 ◽

Cited By ~ 31

Author(s):

Amy Price ◽

Sara Schroter ◽

Rosamund Snow ◽

Melissa Hicks ◽

Rebecca Harmston ◽

...

Keyword(s):

Public Involvement ◽

Research Process ◽

Patient And Public Involvement ◽

Research Papers ◽

The Public ◽

Reporting Requirements ◽

Grant Applications ◽

Before And After ◽

Low Levels ◽

Optional Extra

ObjectivesWhile documented plans for patient and public involvement (PPI) in research are required in many grant applications, little is known about how frequently PPI occurs in practice. Low levels of reported PPI may mask actual activity due to limited PPI reporting requirements. This research analysed the frequency and types of reported PPI in the presence and absence of a journal requirement to include this information.Design and settingA before and after comparison of PPI reported in research papers published inThe BMJbefore and 1 year after the introduction of a journal policy requiring authors to report if and how they involved patients and the public within their papers.ResultsBetween 1 June 2013 and 31 May 2014,The BMJpublished 189 research papers and 1 (0.5%) reported PPI activity. From 1 June 2015 to 31 May 2016, following the introduction of the policy,The BMJpublished 152 research papers of which 16 (11%) reported PPI activity. Patients contributed to grant applications in addition to designing studies through to coauthorship and participation in study dissemination. Patient contributors were often not fully acknowledged; 6 of 17 (35%) papers acknowledged their contributions and 2 (12%) included them as coauthors.ConclusionsInfrequent reporting of PPI activity does not appear to be purely due to a failure of documentation. Reporting of PPI activity increased after the introduction ofThe BMJ’s policy, but activity both before and after was low and reporting was inconsistent in quality. Journals, funders and research institutions should collaborate to move us from the current situation where PPI is an optional extra to one where PPI is fully embedded in practice throughout the research process.

Download Full-text

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

10.21203/rs.2.19589/v2 ◽

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.

Download Full-text

Patient and public involvement (PPI) in prisons: the involvement of people living in prison in the research process – a systematic scoping review

Health & Justice ◽

10.1186/s40352-021-00154-6 ◽

2021 ◽

Vol 9 (1) ◽

Author(s):

Samantha Treacy ◽

Steven Martin ◽

Nelum Samarutilake ◽

Tine Van Bortel

Keyword(s):

Systematic Review ◽

Scoping Review ◽

Public Involvement ◽

Social Care ◽

Positive Impact ◽

Research Process ◽

Evidence Base ◽

Patient And Public Involvement ◽

Care Research ◽

Health And Social Care

Abstract Background Patient and Public Involvement (PPI) in health and social care research is increasingly prevalent and is promoted in policy as a means of improving the validity of research. This also applies to people living in prison and using social care services. Whilst evidence for the effectiveness of PPI was limited and reviews of its application in prisons were not found, the infancy of the evidence base and moral and ethical reasons for involvement mean that PPI continues to be advocated in the community and in prisons. Objectives To conduct a review of the literature regarding the involvement of people or persons living in prison (PLiP) in health and social care research focused on: (i) aims; (ii) types of involvement; (iii) evaluations and findings; (iv) barriers and solutions; and (v) feasibility of undertaking a systematic review. Methods A systematic scoping review was undertaken following Arksey and O’Malley’s (International Journal of Social Research Methodology 8: 19-32, 2005) five-stage framework. A comprehensive search was conducted involving ten electronic databases up until December 2020 using patient involvement and context related search terms. A review-specific spreadsheet was created following the PICO formula, and a narrative synthesis approach was taken to answer the research questions. PRISMA guidelines were followed in reporting. Results 39 papers were selected for inclusion in the review. The majority of these took a ‘participatory’ approach to prisoner involvement, which occurred at most stages during the research process except for more ‘higher’ level research operations (funding applications and project management), and only one study was led by PLiPs. Few studies involved an evaluation of the involvement of PLiP, and this was mostly PLiP or researcher reflections without formal or independent analysis, and largely reported a positive impact. Barriers to the involvement of PLiP coalesced around power differences and prison bureaucracy. Conclusion Given the very high risk of bias arising from the available ‘evaluations’, it was not possible to derive firm conclusions about the effectiveness of PLiP involvement in the research process. In addition, given the state of the evidence base, it was felt that a systematic review would not be feasible until more evaluations were undertaken using a range of methodologies to develop the field further.

Download Full-text

Involving Patients and the Public in E-Health Research

Patient-Centered E-Health ◽

10.4018/978-1-60566-016-5.ch009 ◽

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.

Download Full-text

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)

Primary Health Care Research & Development ◽

10.1017/s1463423621000670 ◽

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.

Download Full-text

Uncovering the values that motivate people in relation to payments for involvement in research

Mental Health and Social Inclusion ◽

10.1108/mhsi-02-2014-0005 ◽

2014 ◽

Vol 18 (1) ◽

pp. 17-20 ◽

Cited By ~ 1

Author(s):

Teresa Roca ◽

Peter Bates

Keyword(s):

Factor Analysis ◽

Health Research ◽

Public Involvement ◽

Patient And Public Involvement ◽

Unique Contribution ◽

Content Type ◽

East Midlands ◽

Health And Social Care ◽

Participation In Research ◽

Practical Implications

Purpose – The purpose of this paper is to contribute to response to the 2013 health and welfare reform in the UK by looking specifically at how health research stakeholders in the East Midlands perceive reimbursements for their participation in research. Design/methodology/approach – In keeping with the government research agenda, a survey was distributed to patient and public involvement in research volunteers and other stakeholders in the East Midlands region. In total, 251 useful returns were statistically analysed using descriptive and frequency based statistics and factor analysis. Principal Component Analysis and Varimax Rotation with Kaiser Normalisation were used. This was supplemented by thematic analysis of the content of open questions. Findings – 29 per cent of respondents reported experience with payments and/or reimbursement of expenses for participation in research. Three main factors emerged from the exploratory factor analysis indicative of the values that underpin participants motivation to participate in research. These were “as an opportunity for self-development”, “volunteering”, and “work and market forces”. This revealed that local organisations were somewhat out of step with stakeholders motivations. Research limitations/implications – It is a small study, and therefore has limited power to predict. Wider societal factors were not taken into account and may also impinge on the responses given, especially if respondents are dependent on welfare benefits and vulnerable to shifting community attitudes. Practical implications – This study has got practical implications for policy makers, ethics committees, agencies promoting patient and public involvement, and research organisations. It should influence the design of health research, allow systems to be aligned with individual motivation, maximise recruitment to research and enhance the validity of research findings. Social implications – Genuine coproduction will enhance the quality of health and social care research, and will be strengthened by payment systems that respond the ethical position of participants rather than simply organise around welfare benefit regulations. This study also has the potential to influence guidance from major funders of health research. Originality/value – This study offers an unique contribution into a neglected, complex yet significant area of research practice.

Download Full-text