Can research development bursaries for patient and public involvement have a positive impact on grant applications? A UK-based, small-scale service evaluation

Introduction: Patient and public involvement (PPI) aims to improve the quality, relevance, and appropriateness of research and ensure that it meets the needs and expectations of those affected by particular conditions to the greatest possible degree. The evidence base for the positive impact of PPI on clinical research continues to grow, but the role of PPI in preclinical research (an umbrella term encompassing ‘basic’, ‘fundamental’, ‘translational’ or ‘lab-based’ research) remains limited. As funding bodies and policymakers continue to increase emphasis on the relevance of PPI to preclinical research, it is timely to map the PPI literature to support preclinical researchers involving the public, patients, or other service users in their research. Therefore, the aim of this scoping review is to explore the literature on patient and public involvement in preclinical research from any discipline. Methods: This scoping review will search the literature in Medline (PubMed), Embase, CINAHL, PsycINFO, Web of Science Core Collection, Scopus, and OpenGrey.net to explore the application of PPI in preclinical research. This review will follow the Joanna Briggs Institute (JBI) guidelines for scoping reviews. It will be reported according to the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR). Two reviewers will independently review articles for inclusion in the final review. Data extraction will be guided by the research questions. The PPI advisory panel will then collaboratively identify themes in the extracted data. Discussion: This scoping review will provide a map of current evidence surrounding preclinical PPI, and identify the body of literature on this topic, which has not been comprehensively reviewed to date. Findings will inform ongoing work of the research team, support the work of other preclinical researchers aiming to include PPI in their own research, and identify knowledge and practice gaps. Areas for future research will be identified.

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Patient and Public Involvement (PPI) in preclinical research: A scoping review protocol

HRB Open Research ◽

10.12688/hrbopenres.13303.1 ◽

2021 ◽

Vol 4 ◽

pp. 61

Author(s):

Pádraig Carroll ◽

Adrian Dervan ◽

Anthony Maher ◽

Ciarán McCarthy ◽

Ian Woods ◽

...

Keyword(s):

Scoping Review ◽

Public Involvement ◽

Positive Impact ◽

Patient And Public Involvement ◽

The Body ◽

Current Evidence ◽

Future Research ◽

Advisory Panel ◽

Preclinical Research ◽

Scoping Reviews

Introduction: Patient and public involvement (PPI) aims to improve the quality, relevance, and appropriateness of research and ensure that it meets the needs and expectations of those affected by particular conditions to the greatest possible degree. The evidence base for the positive impact of PPI on clinical research continues to grow, but the role of PPI in preclinical research (an umbrella term encompassing ‘basic’, ‘fundamental’, ‘translational’ or ‘lab-based’ research) remains limited. As funding bodies and policymakers continue to increase emphasis on the relevance of PPI to preclinical research, it is timely to map the PPI literature to support preclinical researchers involving the public, patients, or other service users in their research. Therefore, the aim of this scoping review is to explore the literature on patient and public involvement in preclinical research from any discipline. Methods: This scoping review will search the literature in Medline (PubMed), Embase, CINAHL, PsycINFO, Web of Science Core Collection, Scopus, and OpenGrey.net to explore the application of PPI in preclinical research. This review will follow the Joanna Briggs Institute (JBI) guidelines for scoping reviews. It will be reported according to the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR). Two reviewers will independently review articles for inclusion in the final review. Data extraction will be guided by the research questions. The PPI advisory panel will then collaboratively identify themes in the extracted data. Discussion: This scoping review will provide a map of current evidence surrounding preclinical PPI, and identify the body of literature on this topic, which has not been comprehensively reviewed to date. Findings will inform ongoing work of the research team, support the work of other preclinical researchers aiming to include PPI in their own research, and identify knowledge and practice gaps. Areas for future research will be identified.

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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.

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Deliberative Processes by Health Technology Assessment Agencies: A Reflection on Legitimacy, Values and Patient and Public Involvement Comment on "Use of Evidence-informed Deliberative Processes by Health Technology Assessment Agencies Around the Globe"

International Journal of Health Policy and Management ◽

10.34172/ijhpm.2020.46 ◽

2020 ◽

Author(s):

Mireille Goetghebeur ◽

Marjo Cellier

Keyword(s):

Health Technology Assessment ◽

Technology Assessment ◽

Public Involvement ◽

Positive Impact ◽

Health Technology ◽

Patient And Public Involvement ◽

What Works ◽

Deliberative Processes ◽

Core Issues ◽

Public And Patient Involvement

Legitimacy of deliberation processes leading to recommendations for public financing or clinical practice depends on the data considered, stakeholders involved and the process by which both of these are selected and organised. Oortwijn et al provides an interesting exploration of processes currently in place in health technology assessment (HTA) agencies. However, agencies are struggling with core issues central to their legitimacy that goes beyond the procedural exploration of Oortwijn et al, such as: how processes reflect the mission and values of the agencies? How they ensure that recommendations are fair and reasonable? Which role should be given to public and patient involvement? Do agencies have a positive impact on the healthcare system and the populations served? What are the drivers of their evolution? We concur with Culyer commentary on the need of learning from doing what works best and that a reflection is indeed needed to "enhance the fairness and legitimacy of HTA."

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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.

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The importance of patient and public involvement (PPI) in the design and delivery of maternal weight management advice.

Proceedings of The Nutrition Society ◽

10.1017/s0029665120001688 ◽

2020 ◽

Vol 79 (OCE2) ◽

Author(s):

Julie Abayomi ◽

Margaret Charnley ◽

Mary McCann ◽

Laura Cassidy ◽

Lisa Newson

Keyword(s):

Weight Gain ◽

Weight Management ◽

Public Involvement ◽

Patient And Public Involvement ◽

Maternal Weight ◽

Grant Applications ◽

Postnatal Women ◽

Nice Guidance ◽

Knowledge Support ◽

Management Advice

AbstractOptimum gestational weight gain (GWG) is vital for successful pregnancy outcomes. However, pregnant women often feel misinformed or that interventions will not meet their needs; hence, many services report poor attendance and/or engagement [1]. PPI aims to empower those affected by an intervention, to participate in shaping the intervention [2,]. The aim of this study was to conduct PPI to gain insight into the experiences of weight management advice received during pregnancy - to inform future interventions.We recruited two PPI representatives (PLRs) - former patients, who assisted in all aspects of the study: design, interview questions, recruitment of PPI participants and collection/analysis of feedback. The PLRs approached pregnant/postnatal women to participate. During the PPI workshop procedure, women gave verbal consent for their views and possible verbatim quotes to be used in publications/grant applications. Feedback was collected via notetaking during four group discussions (approximately 1 hour in duration), all held in community locations - two in Liverpool (n = 10 & 5), two in Derry (n = 7 & 9) and an interview (n = 1, in Derry). The research team collated the transcripts, subjected them to repeated reading and thematic analysis, informed by Braun and Clarke's step-by-step guide [3].Three themes were identified: 1) Weight gain is inevitable in pregnancy; 2) Healthy eating advice is important but lacks consistency and depth; 3) Expectations regarding knowledge/support. Regarding theme 1: Most women viewed weight gain as an inevitable part of pregnancy, with variable amounts of weight gain being reported. Some women viewed pregnancy as an opportunity to ‘relax’ previous diets - using pregnancy as an excuse to gain weight ‘without feeling guilty’. Women were only weighed at their initial appointment but had no opposition to routine weighing throughout pregnancy or for research, providing they were informed about its significance and importance: “It would be ok to be weighed if it is for baby's health.”However, they were opposed to ‘weight watching’: “We live in a society where weight is such a big issue. It can be difficult putting on weight and thinking about it too much and stressing yourself.”Despite known risks associated with excess GWG, women considered weight gain ‘inevitable’, so deemed weight monitoring unnecessary. NICE guidance [4] advises against routine weighing which ‘may produce unnecessary anxiety with no added benefit’.However, regular weighing may help to avert excessive GWG, if conducted sensitively and with appropriate dietary/lifestyle support, versus weighing without intervention, which may cause ‘stress’.

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Involving minority ethnic communities and diverse experts by experience in dementia research: The Caregiving HOPE Study

Dementia ◽

10.1177/1471301218789558 ◽

2018 ◽

Vol 17 (8) ◽

pp. 990-1000 ◽

Cited By ~ 6

Author(s):

Sahdia Parveen ◽

Sandra Barker ◽

Ripaljeet Kaur ◽

Fionnuala Kerry ◽

Wendy Mitchell ◽

...

Keyword(s):

Public Involvement ◽

Positive Impact ◽

National Level ◽

Culturally Sensitive ◽

Patient And Public Involvement ◽

Ethnic Communities ◽

Successful Recruitment ◽

Dementia Research ◽

Meaningful Relationships ◽

Minority Ethnic

Patient and public involvement is imperative to ensure relevance of research. There is a growing literature on the theoretical underpinning on patient and public involvement including level and processes of involvement. The aim of this paper is to describe a person-centred and culturally sensitive approach to working with minority ethnic communities, involving carers, people living with dementia, members of the public and carer support workers, as used in the Caregiving HOPE study; and the influence of the approach on the study’s research processes and outcomes. Patient and public involvement members were considered experts by experience and involved with study conception, design, conduct and dissemination. The perspective of the experts by experience is also presented in this article. The level and nature of involvement was influenced by each individual’s needs and desires which changed over the course of the study. The approach had a significant impact on study outcomes as evidenced by successful recruitment and engagement at a national level, but was not without challenges with greater flexibility required and fuller consideration of financial and time costs required. Benefits of the approach included strong engagement, improved outcomes (successful recruitment of seldom heard groups) and meaningful relationships between researchers and experts by experience. A person-centred and culturally sensitive approach is required with patient and public involvement to ensure involvement is not detrimental to those involved, is meaningful and enjoyable and has a positive impact on the research.

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