Patient and public involvement in stroke research: a scoping review protocol

Patricia Hall; Thilo Kroll; Julianne Hickey; Diarmuid Stokes; Olive Lennon

doi:10.12688/hrbopenres.13449.1

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Study Protocol

Patient and public involvement in stroke research: a scoping review protocol

[version 1; peer review: 1 approved, 1 approved with reservations]

Patricia Hall ^1,2, Thilo Kroll^1,3-5, Julianne Hickey^1,6, Diarmuid Stokes⁷, Olive Lennon^1,2

Patricia Hall ^1,2, Thilo Kroll^1,3-5, [...] Julianne Hickey^1,6, Diarmuid Stokes⁷, Olive Lennon^1,2

PUBLISHED 08 Nov 2021

Author details Author details

¹ iPASTAR Collaborative Doctoral Award Programme, RCSI Division of Population Health Sciences, RCSI University of Medicine and Health Sciences, Dublin 2, Dublin, D02 H903, Ireland
² School of Public Health, Physiotherapy and Sports Science, Health Science Centre, University College Dublin, Belfield, Dublin 4, D04 C7X2, Ireland
³ UCD Centre for Interdisciplinary Research, Education and Innovation in Health Systems (UCD IRIS), University College Dublin, Belfield, Dublin 4, D04 C7X2, Ireland
⁴ UCD School of Nursing, Midwifery and Health Systems, University College Dublin, Belfield, Dublin 4, D04 C7X2, Ireland
⁵ HRB PPI Ignite, University College Dublin, Belfield, Dublin 4, Ireland
⁶ iPASTAR PPI Champion, Dublin, Ireland
⁷ UCD Library, University College Dublin, Belfield, Dublin 4, Ireland

Patricia Hall
Roles: Conceptualization, Methodology, Project Administration, Writing – Original Draft Preparation, Writing – Review & Editing

Thilo Kroll
Roles: Conceptualization, Methodology, Project Administration, Supervision, Writing – Review & Editing

Julianne Hickey
Roles: Methodology, Validation, Writing – Review & Editing

Diarmuid Stokes
Roles: Methodology, Writing – Review & Editing

Olive Lennon
Roles: Conceptualization, Methodology, Project Administration, Supervision, Writing – Review & Editing

OPEN PEER REVIEW

REVIEWER STATUS

This article is included in the Public and Patient Involvement collection.

Abstract

Background: Growing consensus supports public and patient involvement (PPI) in research as the lived experience of patients, family carers and users of health and social care services bring unique insights to healthcare research. The impact and burden of stroke present ongoing challenges for those living with its consequences and could potentially limit PPI activity. This review aims to explore PPI in published stroke research to identify and describe the extent, nature and design of PPI activities, the type/s of studies involved and the profile of PPI participants engaged in stroke research.
Methods: This systematic scoping review, guided by the Arksey & O’Malley five step framework, will be reported according to the PRISMA-ScR reporting guidelines. PPI is embedded at each stage of this proposed scoping review from conceptualisation, participation, contribution and collaboration. The Population, Concept, Context (PCC) structure defines the research question which asks - How is PPI in stroke research currently being conducted and how do the study authors report their PPI activities and its impact? A comprehensive range of electronic databases including PubMed, CINAHL, EMBASE, PsychINFO and the Cochrane Database of Systematic Reviews will generate a broad range of studies. Grey literature (e.g. OpenGrey, Leanus) and internationally recognised stroke organisation websites will be searched for additional research reports. Data extraction will adhere to the Joanna Briggs Institute guidelines, with results collated and mapped to the research cycle stage/s.
Conclusions: The outlined scoping review protocol will comprehensively identify and map the existing scientific literature that reports PPI in stroke research. Findings will be presented in relation to PPI conceptualisation, participant profiles and activities in stroke research, volume, type and range of approaches. Knowledge gaps and future priorities for PPI in stroke research will be identified.

Keywords

patient and public involvement, patient engagement, patient participation, stakeholder involvement, stroke research

Corresponding author: Patricia Hall

Competing interests: No competing interests were disclosed.

Grant information: This study is supported by the HRB Collaborative Doctoral Award iPASTAR (improving Pathways for Acute Stroke and Rehabilitation) [CDA-2019-004]. The first author is a PhD scholar funded under this programme and both Prof Thilo Kroll and Dr Olive Lennon are named grant partners.
The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Copyright: © 2021 Hall P et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

How to cite: Hall P, Kroll T, Hickey J et al. Patient and public involvement in stroke research: a scoping review protocol [version 1; peer review: 1 approved, 1 approved with reservations]. HRB Open Res 2021, 4:118 (https://doi.org/10.12688/hrbopenres.13449.1) First published: 08 Nov 2021, 4:118 (https://doi.org/10.12688/hrbopenres.13449.1) Latest published: 28 Jul 2022, 4:118 (https://doi.org/10.12688/hrbopenres.13449.2)

Introduction

Stroke is a major cause of death and disability worldwide and many survivors live with significant disability¹. Despite advances in prevention, early recognition/diagnosis and treatment, projections indicate a significant increase in stroke events worldwide in the coming years². Whilst death rates have reduced, the burden of stroke for those living with the consequences, both survivors and their loved ones, present ongoing daily challenges. Communication difficulties, cognitive impairment, perception issues, emotional factors and general fatigue, although less obvious than physical disabilities can be equally as devastating. This burden of stroke reveals a vulnerability for people to become marginalised, limiting their ability to actively engage in their own care and/or fully participate in life after stroke^3,4. The Stroke Action Plan for Europe identifies and aims to address the challenges facing stroke survivors and families, associated with life after stroke².

In healthcare research specifically, patients with a lived experience of disease, family carers and users of health and social care services bring unique insights. Over the past 20 – 30 years patient and public involvement (PPI) in health and social research has evolved and gained widespread support. The UK has been at the forefront of establishing policy support through the National Institute for Health Research (NIHR) advisory group, INVOLVE, and defines PPI as “research being carried out 'with' or 'by' members of the public rather than 'to', 'about' or 'for' them”⁵. The term ‘public’ is used to include patients, potential patients, carers, and anyone who uses health and social care services or represents service users. In Ireland, since 2017 the Health Research Board (HRB) and the Irish Research Council (IRC) have committed to develop and support PPI with the establishment of the PPI Ignite network⁶. PPI in research is considered to occur when “individuals meaningfully and actively collaborate” at one or more stages of the research process⁷. The conceptual model often used to describe this collaboration is drawn from Arnstein’s ladder of citizen participation⁸. In this model three approaches to involvement are described – consultation, collaboration, and user-control along a spectrum of involvement which can vary at different stages.

A number of arguments have been postulated for actively involving patients and the public in research. These generally relate to the political mandate for inclusion from research funders; the moral argument that supports the rationale that people affected by the outcomes of research should be included in the decision making; and the consequentialist argument that asserts the benefits to the quality of research as a result of involving service users. This latter argument has a growing consensus as the positive impact on improving research quality and strengthening relevance is acknowledged⁹. However, there remains ambiguity in the literature on the concept and understanding of what is and what is not PPI in research¹⁰. This can lead to misunderstanding and misinterpretation of the extent of public involvement in research and potential tokenistic representation especially in relation to seldom heard voice groups including individuals with stroke and their carers/family.

Adopting the four values of respect, openness, reciprocity and flexibility, and working collaboratively across all stages of involvement is recommended to support inclusivity, particularly with diverse, seldom heard groups¹¹. The impact and burden of stroke on the individual and family could potentially limit PPI activity but consideration of these barriers and facilitators has been found to benefit stroke survivors, carers and the research process¹². Working with people affected by stroke and health care professionals, the UK Stroke Association has identified priority areas for research across the two main stroke care pathways - Stroke prevention, diagnosis, pre-hospital and hospital care; and Stroke rehabilitation and long-term care¹³. Stroke survivors/carers represented over 50% of contributors suggesting an interest and eagerness to be involved in the research process despite limitations.

As PPI gains recognition and importance in stroke research in principle, it is critical to understand what is happening in parallel in stroke research practice. This paper describes the protocol for a scoping review collating and commenting on current PPI practices described and reported in stroke research. To our knowledge no current scoping review has examined the published literature to explore PPI in stroke research as we outline here.

Protocol

Aims and objectives

The aim of this review is to (i) identify and describe the nature, design and type/s of studies that involve patients and/or members of the public in the planning, conduct and/or dissemination of stroke research; (ii) explore how PPI has been conceptualised in stroke research.

Objectives: to map the volume, type and range of PPI approaches in stroke research

to profile PPI participants and examine representativeness of participants from an equality, diversity and inclusion (EDI) perspective

to map PPI research activities against the stroke research cycle

to collate reported enablers and barriers to PPI application in stroke research

to explore the impact of PPI on stroke research, clinical practice and health policy

Design

A scoping review will be conducted as it is considered the most appropriate methodology to broadly map the key sources and types of evidence available when the extent and nature of the research is largely unknown¹⁴. The review will conform to the 5 stages of the Arksey & O'Malley framework for scoping studies¹⁵ refined by Levac¹⁶ and will be reported according to the PRISMA-ScR reporting guidelines¹⁷.

Stage 1: Identify the research question

Stage 2: Identify the relevant studies

Stage 3: Study selection

Stage 4: Charting the data

Stage 5: Collating, summarising and reporting the results

Stage 6: Stakeholder consultation (optional)

Data will be extracted and mapped to the published stages of PPI engagement across the research cycle (Figure 1)^18,19.

Figure 1. Research cycle framework^18,19.

Stage 1: Identify the research question

The first stage of the protocol clearly identifies the research question based on the overall aim of the scoping review; namely to examine the extent, range, and nature of stroke research that actively involves patients and the public across any or multiple stages of the research process.

The Population, Concept, Context (PCC) structure proposed by the Joanna Briggs Institute (JBI)²⁰, outlined below, was used to define the research question which asks: How is PPI in stroke research currently being conducted and how do the study authors report the details of their PPI activities and its impact?

Population: individuals who have experienced stroke. This includes stroke survivors, carers and family who can all be affected by stroke. The lived experience of each can bring unique insights to stroke research.

Concept: PPI (as defined by NIHR⁵ as “research carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them” and where “an active partnership between patients and the public and researcher” is present). This will include all initiatives or activities irrespective of the terminology used, where there is explicit involvement of PPI partners across any of the phases of stroke research (Figure 1).

Context: Stroke research – relating to aspects including but not limited to stroke recognition, primary or secondary prevention, acute care, treatment/management, rehabilitation, survival, long-term outcomes/care, community support.

Based on the review question, aims and objectives and PCC framework the following Inclusion/exclusion criteria was developed (Table 1):

Table 1. Inclusion/exclusion criteria.

Inclusion	Exclusion
Empirical stroke research studies of any study design, including qualitative, quantitative and mixed methods and where relevant, published pre-trial consultation processes
Studies with a clear statement in relation to PPI activities/ initiatives which fit the principles of PPI in stroke research, irrespective of terminology	Studies, including those where the focus is on participation or engagement in trials or other research, that do not explicitly state involvement of PPI partners in one or more stages of the stroke research cycle identified in Figure 1.
Title and abstract in English language
Any year
Publications which include empirical data (e.g. qualitative, quantitative, meta-analyses, review papers)	Publications that do not report original empirical data (e.g. editorials, commentary pieces) and conference abstracts

Stage 2: Identify the relevant studies

As the research question is broad, a comprehensive range of electronic databases has been identified by the authors to assist in a systematic and targeted search strategy. All publications that meet the inclusion criteria identified will be selected. No date, location or language limitations will be applied with respect to the manuscripts selected. The search will involve the electronic databases PubMed, CINAHL, EMBASE, PsycINFO and the Cochrane Database of Systematic Reviews. These libraries were chosen as they will yield a broad, cross disciplinary range of studies. To target relevant grey literature, a systematic search will be conducted in the key databases, e.g. OpenGrey and Leanus. Websites relating to internationally recognised stroke organisations (e.g. World Stroke Organisation, European Stroke Organisation, UK Stroke Association, American Heart Association/ American Stroke Association and Stroke Foundation-Australia) and other charitable/non-governmental organisations (e.g. James Lind Alliance) will be searched for additional, non-indexed published research reports and policy documents which include empirical data.

The targeted search strategy, developed in consultation with the information scientist (librarian), will be adapted for each database. The key search concepts resulting from the PCC framework are ‘individuals with experience of stroke’ (population), ‘PPI’ (concept) and ‘stroke research’ (context). Closely examining these concepts and using thesaurus terms where appropriate generates a comprehensive list of search terms including stroke survivor, stroke carer, patient and public involvement, patient participation, patient engagement, consumer involvement, stakeholder participation and stroke research.

A sample of an indicative search strategy for the PubMed database is provided below (Table 2).

Table 2. Sample search strategy.

Population – individuals with experience of stroke
#1	(patient OR survivor OR adult OR family OR carer OR parent)
#2	(stroke OR poststroke OR post-stroke OR cerebrovascular disease OR cerebrovascular disorders OR CVD OR CVA OR brain infarction OR intracranial arterial diseases)
#3	#1 AND #2
Concept – PPI (patient and public involvement)
#4	(“patient and public involvement” OR “patient involvement” OR “patient partnership” OR “patient collaboration” OR “patient engagement” OR “patient advocacy” OR “patient participation” OR “consumer participation” OR “consumer involvement” OR “consumer engagement” OR “stakeholder participation” OR “stakeholder engagement” OR “patient driven” OR “survivor participation” OR patient participation [MeSH] OR patient advocacy [MeSH] OR stakeholder participation” [MeSH] OR survivor participation)
Context – stroke research
#5	(stroke OR poststroke OR post-stroke OR cerebrovascular disease OR cerebrovascular disorders OR CVD OR CVA OR brain infarction OR intracranial arterial diseases)
#6	(research OR review OR investigat* OR study OR project OR evaluation)
#7	#5 AND #6
#8	#3 AND #4 AND #7

Stage 3: Study selection

Studies retrieved by the targeted search strategy will be collated and uploaded to Covidence for screening and final selection. Duplicates will be removed. Two reviewers will independently screen each record by title and abstract using the specified inclusion/exclusion criteria. Included studies following review of titles and abstract, will be retrieved in full text and again will be assessed independently by two reviewers. Disagreements will be resolved by discussion and where consensus is not achieved a third researcher will be consulted before final inclusion/exclusion.

Stage 4: Charting the data

A data charting form will be devised to determine the relevant information to extract from the included sources using Microsoft EXCEL spreadsheet software. This will be developed in accordance with the JBI guidelines²⁰ for charting and extracting data and in conjunction with the purpose specific research cycle framework developed for this review. It is anticipated that this form will require review and modification as the process advances and familiarity with selected studies dictates a need to capture further information.

● Author(s)
● Year of publication
● Title
● Origin/country of origin
● Study aims/purpose
● Study type
● PPI concept description, approach, stages of inclusion
● PPI representation: population, profile, and underrepresentation of groups, where present
● PPI research activities, contributions
● Facilitators and barriers identified in incorporating PPI
● PPI in research evaluation, benefits, impact

Stage 5: Collating, summarising and reporting the results

The review findings will be reported using the PRISMA-ScR guidelines¹⁷. A PRISMA flow diagram will be produced to present an overview of the identification and selection process. Data from the studies included in the review will be collated and mapped to the stage/s of the research cycle. Summary tables will be utilised to present the current volume, publication year, origin, study characteristics, and methodological design. PPI participants in current stroke research will be profiled and examined as representative of the stroke population and family/carer network. A compendium of approaches taken to PPI in stroke research will be developed including the involvement as described e.g. consultation, collaboration, and user-control across the different stages of the research cycle. A narrative synthesis will be conducted for findings that focus on the contribution made by PPI in stroke research and the methods used to report this in the scientific literature. Consistent with scoping review guidance, no appraisal of the quality of the studies will be conducted.

Stage 6: Stakeholder consultation

Strong PPI engagement will be embedded in this scoping review methodology. A stroke research advisory panel including multiple stakeholders (people affected by stroke – survivors/carers/advocates, clinicians, research team) has been developed to guide both the design and the conduct of this review and further stroke research activities. A PPI Champion / stroke survivor contributed to the research objectives and the refining of the search strategy described in this protocol. As an integral member of the review team our champion will collaborate in constructing the questions to drive data extraction, and / or reporting and disseminating the findings.

Study status

Electronic database searches are in progress and will be completed by 1^st December 2021. No study selection process, formal screening or data extraction has commenced at time of submission.

Discussion/conclusion

There is a growing consensus on the importance of PPI in health and social care research, although current practices in stroke research remain uncharted. A scoping review is indicated where the objective of the review is to generate a clear picture of a concept and its gaps in existing research²¹. These broad objectives dictated our approach, as presented, to identifying and mapping the existing scientific literature that reports PPI in current stroke research.

While a scoping review can take a broader approach and search for opinion pieces, editorials and guideline documents, we opted in this review to keep a narrower focus to only stroke research with empirical outputs to capture current practices, as opposed to including and summarising best practice recommendations. Where present, PPI activity in stroke research may not always be explicitly reported in scientific papers and appropriately indexed and we acknowledge this potential barrier in searching the stroke research literature. We further acknowledge that while we chose to focus solely on research with empirical output/s, the quality of individual research studies included in the review and primary results unrelated to PPI are not commented on directly.

The findings from this scoping review will help identify what is currently reported in terms of the profile of PPI participants in stroke research, the strategies employed for collaboration and the PPI contributions across the phases of the research cycle. Knowledge gaps will be identified and future priorities for PPI in stroke research identified as a result of this scoping review. Dissemination of the findings will contribute to enhanced awareness and understanding of the need for PPI in stroke research as well as highlighting the current impact of PPI in stroke research, where reported.

Data availability

No data are associated with this article.

Acknowledgements

PH would like to acknowledge all those at PPI Ignite Network @ UCD for facilitating and supporting the 8-week internship in June/July 2021 where this project was conceived. This experiential learning was completed as part of the SPHeRE PhD programme training in population health and health services research.

Faculty Opinions recommended

References

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2. Norrving B, Barrick J, Davalos A, et al.: Action Plan for Stroke in Europe 2018-2030. Eur Stroke J. 2018; 3(4): 309–36. PubMed Abstract | Publisher Full Text | Free Full Text
3. D'Alisa S, Baudo S, Mauro A, et al.: How does stroke restrict participation in long-term post-stroke survivors? Acta Neurol Scand. 2005; 112(3): 157–62. PubMed Abstract | Publisher Full Text
4. Lou S, Carstensen K, Jørgensen CR, et al.: Stroke patients' and informal carers' experiences with life after stroke: an overview of qualitative systematic reviews. Disabil Rehabil. 2017; 39(3): 301–13. PubMed Abstract | Publisher Full Text
5. Hanley B, Bradburn J, Barnes M, et al.: Involving the public in NHS public health, and social care research: briefing notes for researchers. Involve; 2004. Reference Source
6. Health Research Board. Reference Source
7. Medical Research Charities Group (MRCG): Developing a PPI Strategy: A Guide. 2018. Reference Source
8. Arnstein SR: A Ladder of Citizen Participation. J Am Plann Assoc. 1969; 35(4): 216–224. Publisher Full Text
9. Tomlinson J, Medlinskiene K, Cheong VL, et al.: Patient and public involvement in designing and conducting doctoral research: the whys and the hows. Res Involv Engagem. 2019; 5(1): 23. PubMed Abstract | Publisher Full Text | Free Full Text
10. McKevitt C, Fudge N, Wolfe C: What is involvement in research and what does it achieve? Reflections on a pilot study of the personal costs of stroke. Health Expect. 2010; 13(1): 86–94. PubMed Abstract | Publisher Full Text | Free Full Text
11. Ní Shé É, Cassidy J, Davies C, et al.: Minding the gap: identifying values to enable public and patient involvement at the pre-commencement stage of research projects. Res Involv Engagem. 2020; 6(1): 46. PubMed Abstract | Publisher Full Text | Free Full Text
12. Harrison M, Palmer R: Exploring patient and public involvement in stroke research: a qualitative study. Disabil Rehabil. 2015; 37(23): 2174–83. PubMed Abstract | Publisher Full Text
13. Stroke Association: Shaping stroke research to rebuild lives. 2021. Reference Source
14. Grant MJ, Booth A: A typology of reviews: an analysis of 14 review types and associated methodologies. Health Info Libr J. 2009; 26(2): 91–108. PubMed Abstract | Publisher Full Text
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18. NHS National Institute for Health Research: Patient and public involvement in health and social care research. 2014. Reference Source
19. Health Research Board. Reference Source
20. Peters MDJ, Godfrey C, McInerney P, et al.: Chapter 11: Scoping Reviews (2020 version). In: Aromataris E, Munn Z (Editors). JBI Manual for Evidence Synthesis, JBI, 2020. Reference Source
21. Lockwood C, dos Santos KB, Pap R: Practical Guidance for Knowledge Synthesis: Scoping Review Methods. Asian Nurs Res (Korean Soc Nurs Sci). 2019; 13(5): 287–94. PubMed Abstract | Publisher Full Text

Comments on this article Comments (0)

Version 2

VERSION 2 PUBLISHED 08 Nov 2021

Author details Author details

Patricia Hall
Roles: Conceptualization, Methodology, Project Administration, Writing – Original Draft Preparation, Writing – Review & Editing

Thilo Kroll
Roles: Conceptualization, Methodology, Project Administration, Supervision, Writing – Review & Editing

Julianne Hickey
Roles: Methodology, Validation, Writing – Review & Editing

Diarmuid Stokes
Roles: Methodology, Writing – Review & Editing

Olive Lennon
Roles: Conceptualization, Methodology, Project Administration, Supervision, Writing – Review & Editing

Competing interests

No competing interests were disclosed.

Grant information

This study is supported by the HRB Collaborative Doctoral Award iPASTAR (improving Pathways for Acute Stroke and Rehabilitation) [CDA-2019-004]. The first author is a PhD scholar funded under this programme and both Prof Thilo Kroll and Dr Olive Lennon are named grant partners.
The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Article Versions (2)

version 2

Revised

Published: 28 Jul 2022, 4:118

https://doi.org/10.12688/hrbopenres.13449.2

version 1

Published: 08 Nov 2021, 4:118

https://doi.org/10.12688/hrbopenres.13449.1

© 2021 Hall P et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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Hall P, Kroll T, Hickey J et al. Patient and public involvement in stroke research: a scoping review protocol [version 1; peer review: 1 approved, 1 approved with reservations]. HRB Open Res 2021, 4:118 (https://doi.org/10.12688/hrbopenres.13449.1)

NOTE: If applicable, it is important to ensure the information in square brackets after the title is included in all citations of this article.

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VERSION 1

PUBLISHED 08 Nov 2021

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Reviewer Report 30 May 2022

Julie Broderick, Discipline of Physiotherapy, School of Medicine, Trinity College Dublin, University of Dublin, Dublin, Ireland

Approved

https://doi.org/10.21956/hrbopenres.14657.r32067

The authors need to be commended for a protocol in this valuable topic area of PPI applied to stroke. This emerging area very much lends itself to the scoping review methodology. I particularly liked how PPI was the topic of this protocol and how it was integrated into Stage 6 of the Arksey and O Malley framework. I have some relatively minor points which are mainly around providing more detail around the scoping review protocol methodology.

Some points for your consideration:

I would suggest that the aim is reframed as a single overarching protocol aim, rather than how it is numbered currently
This is more a formatting issue - but could the objectives be numbered
It is useful to refer to seminar papers in the area of scoping review methodology - Arksey and O' Malley and Levac which are included but I would also suggest referring to Chapter 11 of the JBI Manual for Evidence Synthesis as a methodological framework for this scoping review. I see the JBI data extraction tool was listed but this Chapter is worth reading in detail, also using it as a framework and referring to it in the context of scoping review methodology.
In stage 2: 'Leanus' (grey literature) is mentioned in the abstract and methodology - I think this should be spelt 'Lenus', Will reference list of included studies/sources of evidence be checked for possible inclusions. An indicative search strategy is included but could a full search strategy for one of the electronic databases be included as extended data. Could more detail of the grey literature search be included - eg Cadth grey matters tool/others.
in Stage 3: Could it be stated that reasons for exclusions will be recorded and charted in the PRISMA flow diagram
In Stage 4: Clarify if data will be extracted by one author and verified by another. Following the JBI convention, risk of bias assessment is not a necessity. Clarify whether a risk of bias assessment will take place or not.
In Stage 5: Specify how impact will be evaluated/charted and how representativeness of participants will be assessed from an EDI perspective.
Discussion: It is mentioned that a scoping review objective is to generate gaps in existing research - but gaps will not be explored in this review so this point may need revision in the context of this protocol.
Final point - Could PRISMA-P checklist with location of reporting elements be uploaded as extended data.

Is the rationale for, and objectives of, the study clearly described?

Yes
Is the study design appropriate for the research question?

Yes
Are sufficient details of the methods provided to allow replication by others?

Yes
Are the datasets clearly presented in a useable and accessible format?

Partly

Competing Interests: No competing interests were disclosed.

Reviewer Expertise: Research in physical functioning across chronic diseases with a focus on socially excluded populations. Evidence synthesis.

I confirm that I have read this submission and believe that I have an appropriate level of expertise to confirm that it is of an acceptable scientific standard.

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Author Response 28 Jul 2022

Patricia Hall, iPASTAR Collaborative Doctoral Award Programme, RCSI Division of Population Health Sciences, RCSI University of Medicine and Health Sciences, Dublin 2, D02 H903, Ireland

28 Jul 2022

Author Response
Thank you for your positive comments and detailed points for consideration.
Please see below detailed responses:
Point 1: I would suggest that the aim is reframed as a single overarching ... Continue reading
Thank you for your positive comments and detailed points for consideration.
Please see below detailed responses:
Point 1: I would suggest that the aim is reframed as a single overarching protocol aim, rather than how it is numbered currently
In response to Point 1 – Thank you, numbering has been removed as suggested.
This now reads as below:
The overarching aim of this review is to identify and describe current practices of PPI in stroke research. Specifically, this review will focus on the nature, design and type/s of studies that involve patients and/or members of the public in the planning, conduct and/or dissemination of stroke research, and explore how PPI has been conceptualised in stroke research.

Point 2: This is more a formatting issue - but could the objectives be numbered
In response to Point 2 – I have reformatted the objectives in a numbered sequence.
This now reads as:
Objectives:

map the volume, type and range of PPI approaches in stroke research

profile PPI participants and examine representativeness of participants from an equality, diversity and inclusion (EDI) perspective

map PPI research activities against the stroke research cycle

collate reported enablers and barriers to PPI application in stroke research

explore the impact of PPI on stroke research, clinical practice and health policy

Point 3 : It is useful to refer to seminar papers in the area of scoping review methodology - Arksey and O' Malley and Levac which are included but I would also suggest referring to Chapter 11 of the JBI Manual for Evidence Synthesis as a methodological framework for this scoping review. I see the JBI data extraction tool was listed but this Chapter is worth reading in detail, also using it as a framework and and referring to it in the context of scoping review methodology.
In response to Point 3 – thank you I have read this chapter in the JBI manual in detail and with great interest.
This now reads in the manuscript:
The review will conform to the 5 stages of the Arksey & O'Malley framework for scoping studies ¹⁸ refined by Levac ¹⁹ and the methodological framework described by Peters in the JBI Manual for Evidence Synthesis (Chapter 11). ²⁰

Point 4: In stage 2: 'Leanus' (grey literature) is mentioned in the abstract and methodology - I think this should be spelt 'Lenus', Will reference list of included studies/sources of evidence be checked for possible inclusions. An indicative search strategy is included but could a full search strategy for one of the electronic databases be included as extended data. Could more detail of the grey literature search be included - eg Cadth grey matters tool/others.
In response to Point 4 – (i) apologies for the spelling error; this has now been corrected in the manuscript. (ii) Reference lists will be checked and sample PubMed search strategy is included as supplementary information. (iii) Thank you I was not familiar with Cadth but will now explore this grey literature checklist tool when searching the grey literature.
The manuscript now reads:
The search will involve the electronic databases PubMed, CINAHL, EMBASE, PsychINFO and the Cochrane Database of Systematic Reviews (Supplementary file). These libraries were chosen as they will yield a broad, cross disciplinary range of studies. In addition, reference lists of included studies will be checked. To target relevant grey literature, a systematic search will be conducted in the key databases, e.g. OpenGrey and Lenus. A grey literature checklist e.g. Cadth (Canada’s drug and health technology agency), will help ensure a comprehensive search is completed.

Point 5: in Stage 3: Could it be stated that reasons for exclusions will be recorded and charted in the PRISMA flow diagram
In response to Point 5 - Thank you, I have included this detail in the manuscript which now reads:
A PRISMA flow diagram will be produced to present an overview of the identification, screening, eligibility and inclusion phases, with the reasons for exclusion of studies in the screening process provided.

Point 6: In Stage 4: Clarify if data will be extracted by one author and verified by another. Following the JBI convention, risk of bias assessment is not a necessity. Clarify whether a risk of bias assessment will take place or not.
In response to Point 6 – Thank you, I have clarified the extraction process and the manuscript now includes:
Data extraction will be completed independently by at least 2 reviewers and any discrepancies will be resolved by discussion to reach consensus. In accordance with scoping review guidelines, the quality of any study included in this review will not be assessed for risk of bias.

Point 7: In Stage 5: Specify how impact will be evaluated/charted and how representativeness of participants will be assessed from and EDI perspective.
In response to Point 7 - it is expected the process of summarising and reporting results will be an iterative process. Where individual studies provide detail, the impact will be recorded and the diversity of PPI partners will be examined. The manuscript now reads:
The extracted data will be presented in tabular format, providing a brief summary of each individual study included in the review and documenting barriers/facilitators and impact of participation, where reported in individual studies. The benefit of PPI in stroke research will be recorded where the study details changes (added value) in research methods/activities; interpretation of results, dissemination activities or in policy/practice that was attributed to experience-based involvement. Evaluation of impact will be guided by appraisal criteria²⁵which considers whether the paper discusses the difference PPI has made to the research activities and the impact of user involvement on the research project (e.g. length of study, financial implications of involvement activities, cost-benefit analyses), and whether benefits claimed are supported by examples from the research project.

The diversity of the experience-based stroke research partners will be examined for sex, ethnicity, stroke type, disability level and will consider issues that may marginalise specific stroke groups from PPI activities including notable mobility and/or communication issues.

Point 8: Discussion: It is mentioned that a scoping review objective is to generate gaps in existing research - but gaps will not be explored in this review so this point may need revision in the context of this protocol.
In response to Point 8 – apologies it was not the intention to suggest gaps will be explored but rather by comprehensively mapping current stroke research practice, gaps may be identified thereby providing some key opportunities for future research.
This is now included in the manuscript as:
Gaps in current stroke research practices may be identified thereby providing some key opportunities and recommendations for future research.

Point 9: Final point - Could PRISMA-P checklist with location of reporting elements be uploaded as extended data.
In response to Point 9 - A checklist is now included in a supplemental information file
Thank you for your positive comments and detailed points for consideration.
Please see below detailed responses:
Point 1: I would suggest that the aim is reframed as a single overarching protocol aim, rather than how it is numbered currently
In response to Point 1 – Thank you, numbering has been removed as suggested.
This now reads as below:
The overarching aim of this review is to identify and describe current practices of PPI in stroke research. Specifically, this review will focus on the nature, design and type/s of studies that involve patients and/or members of the public in the planning, conduct and/or dissemination of stroke research, and explore how PPI has been conceptualised in stroke research.

Point 2: This is more a formatting issue - but could the objectives be numbered
In response to Point 2 – I have reformatted the objectives in a numbered sequence.
This now reads as:
Objectives:

map the volume, type and range of PPI approaches in stroke research

profile PPI participants and examine representativeness of participants from an equality, diversity and inclusion (EDI) perspective

map PPI research activities against the stroke research cycle

collate reported enablers and barriers to PPI application in stroke research

explore the impact of PPI on stroke research, clinical practice and health policy

Point 3 : It is useful to refer to seminar papers in the area of scoping review methodology - Arksey and O' Malley and Levac which are included but I would also suggest referring to Chapter 11 of the JBI Manual for Evidence Synthesis as a methodological framework for this scoping review. I see the JBI data extraction tool was listed but this Chapter is worth reading in detail, also using it as a framework and and referring to it in the context of scoping review methodology.
In response to Point 3 – thank you I have read this chapter in the JBI manual in detail and with great interest.
This now reads in the manuscript:
The review will conform to the 5 stages of the Arksey & O'Malley framework for scoping studies ¹⁸ refined by Levac ¹⁹ and the methodological framework described by Peters in the JBI Manual for Evidence Synthesis (Chapter 11). ²⁰

Point 4: In stage 2: 'Leanus' (grey literature) is mentioned in the abstract and methodology - I think this should be spelt 'Lenus', Will reference list of included studies/sources of evidence be checked for possible inclusions. An indicative search strategy is included but could a full search strategy for one of the electronic databases be included as extended data. Could more detail of the grey literature search be included - eg Cadth grey matters tool/others.
In response to Point 4 – (i) apologies for the spelling error; this has now been corrected in the manuscript. (ii) Reference lists will be checked and sample PubMed search strategy is included as supplementary information. (iii) Thank you I was not familiar with Cadth but will now explore this grey literature checklist tool when searching the grey literature.
The manuscript now reads:
The search will involve the electronic databases PubMed, CINAHL, EMBASE, PsychINFO and the Cochrane Database of Systematic Reviews (Supplementary file). These libraries were chosen as they will yield a broad, cross disciplinary range of studies. In addition, reference lists of included studies will be checked. To target relevant grey literature, a systematic search will be conducted in the key databases, e.g. OpenGrey and Lenus. A grey literature checklist e.g. Cadth (Canada’s drug and health technology agency), will help ensure a comprehensive search is completed.

Point 5: in Stage 3: Could it be stated that reasons for exclusions will be recorded and charted in the PRISMA flow diagram
In response to Point 5 - Thank you, I have included this detail in the manuscript which now reads:
A PRISMA flow diagram will be produced to present an overview of the identification, screening, eligibility and inclusion phases, with the reasons for exclusion of studies in the screening process provided.

Point 6: In Stage 4: Clarify if data will be extracted by one author and verified by another. Following the JBI convention, risk of bias assessment is not a necessity. Clarify whether a risk of bias assessment will take place or not.
In response to Point 6 – Thank you, I have clarified the extraction process and the manuscript now includes:
Data extraction will be completed independently by at least 2 reviewers and any discrepancies will be resolved by discussion to reach consensus. In accordance with scoping review guidelines, the quality of any study included in this review will not be assessed for risk of bias.

Point 7: In Stage 5: Specify how impact will be evaluated/charted and how representativeness of participants will be assessed from and EDI perspective.
In response to Point 7 - it is expected the process of summarising and reporting results will be an iterative process. Where individual studies provide detail, the impact will be recorded and the diversity of PPI partners will be examined. The manuscript now reads:
The extracted data will be presented in tabular format, providing a brief summary of each individual study included in the review and documenting barriers/facilitators and impact of participation, where reported in individual studies. The benefit of PPI in stroke research will be recorded where the study details changes (added value) in research methods/activities; interpretation of results, dissemination activities or in policy/practice that was attributed to experience-based involvement. Evaluation of impact will be guided by appraisal criteria²⁵which considers whether the paper discusses the difference PPI has made to the research activities and the impact of user involvement on the research project (e.g. length of study, financial implications of involvement activities, cost-benefit analyses), and whether benefits claimed are supported by examples from the research project.

The diversity of the experience-based stroke research partners will be examined for sex, ethnicity, stroke type, disability level and will consider issues that may marginalise specific stroke groups from PPI activities including notable mobility and/or communication issues.

Point 8: Discussion: It is mentioned that a scoping review objective is to generate gaps in existing research - but gaps will not be explored in this review so this point may need revision in the context of this protocol.
In response to Point 8 – apologies it was not the intention to suggest gaps will be explored but rather by comprehensively mapping current stroke research practice, gaps may be identified thereby providing some key opportunities for future research.
This is now included in the manuscript as:
Gaps in current stroke research practices may be identified thereby providing some key opportunities and recommendations for future research.

Point 9: Final point - Could PRISMA-P checklist with location of reporting elements be uploaded as extended data.
In response to Point 9 - A checklist is now included in a supplemental information file
Competing Interests: No competing interests were disclosed. Close
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COMMENTS ON THIS REPORT

Author Response 28 Jul 2022

Patricia Hall, iPASTAR Collaborative Doctoral Award Programme, RCSI Division of Population Health Sciences, RCSI University of Medicine and Health Sciences, Dublin 2, D02 H903, Ireland

28 Jul 2022

Author Response
Thank you for your positive comments and detailed points for consideration.
Please see below detailed responses:
Point 1: I would suggest that the aim is reframed as a single overarching ... Continue reading
Thank you for your positive comments and detailed points for consideration.
Please see below detailed responses:
Point 1: I would suggest that the aim is reframed as a single overarching protocol aim, rather than how it is numbered currently
In response to Point 1 – Thank you, numbering has been removed as suggested.
This now reads as below:
The overarching aim of this review is to identify and describe current practices of PPI in stroke research. Specifically, this review will focus on the nature, design and type/s of studies that involve patients and/or members of the public in the planning, conduct and/or dissemination of stroke research, and explore how PPI has been conceptualised in stroke research.

Point 2: This is more a formatting issue - but could the objectives be numbered
In response to Point 2 – I have reformatted the objectives in a numbered sequence.
This now reads as:
Objectives:

map the volume, type and range of PPI approaches in stroke research

profile PPI participants and examine representativeness of participants from an equality, diversity and inclusion (EDI) perspective

map PPI research activities against the stroke research cycle

collate reported enablers and barriers to PPI application in stroke research

explore the impact of PPI on stroke research, clinical practice and health policy

Point 3 : It is useful to refer to seminar papers in the area of scoping review methodology - Arksey and O' Malley and Levac which are included but I would also suggest referring to Chapter 11 of the JBI Manual for Evidence Synthesis as a methodological framework for this scoping review. I see the JBI data extraction tool was listed but this Chapter is worth reading in detail, also using it as a framework and and referring to it in the context of scoping review methodology.
In response to Point 3 – thank you I have read this chapter in the JBI manual in detail and with great interest.
This now reads in the manuscript:
The review will conform to the 5 stages of the Arksey & O'Malley framework for scoping studies ¹⁸ refined by Levac ¹⁹ and the methodological framework described by Peters in the JBI Manual for Evidence Synthesis (Chapter 11). ²⁰

Point 4: In stage 2: 'Leanus' (grey literature) is mentioned in the abstract and methodology - I think this should be spelt 'Lenus', Will reference list of included studies/sources of evidence be checked for possible inclusions. An indicative search strategy is included but could a full search strategy for one of the electronic databases be included as extended data. Could more detail of the grey literature search be included - eg Cadth grey matters tool/others.
In response to Point 4 – (i) apologies for the spelling error; this has now been corrected in the manuscript. (ii) Reference lists will be checked and sample PubMed search strategy is included as supplementary information. (iii) Thank you I was not familiar with Cadth but will now explore this grey literature checklist tool when searching the grey literature.
The manuscript now reads:
The search will involve the electronic databases PubMed, CINAHL, EMBASE, PsychINFO and the Cochrane Database of Systematic Reviews (Supplementary file). These libraries were chosen as they will yield a broad, cross disciplinary range of studies. In addition, reference lists of included studies will be checked. To target relevant grey literature, a systematic search will be conducted in the key databases, e.g. OpenGrey and Lenus. A grey literature checklist e.g. Cadth (Canada’s drug and health technology agency), will help ensure a comprehensive search is completed.

Point 5: in Stage 3: Could it be stated that reasons for exclusions will be recorded and charted in the PRISMA flow diagram
In response to Point 5 - Thank you, I have included this detail in the manuscript which now reads:
A PRISMA flow diagram will be produced to present an overview of the identification, screening, eligibility and inclusion phases, with the reasons for exclusion of studies in the screening process provided.

Point 6: In Stage 4: Clarify if data will be extracted by one author and verified by another. Following the JBI convention, risk of bias assessment is not a necessity. Clarify whether a risk of bias assessment will take place or not.
In response to Point 6 – Thank you, I have clarified the extraction process and the manuscript now includes:
Data extraction will be completed independently by at least 2 reviewers and any discrepancies will be resolved by discussion to reach consensus. In accordance with scoping review guidelines, the quality of any study included in this review will not be assessed for risk of bias.

Point 7: In Stage 5: Specify how impact will be evaluated/charted and how representativeness of participants will be assessed from and EDI perspective.
In response to Point 7 - it is expected the process of summarising and reporting results will be an iterative process. Where individual studies provide detail, the impact will be recorded and the diversity of PPI partners will be examined. The manuscript now reads:
The extracted data will be presented in tabular format, providing a brief summary of each individual study included in the review and documenting barriers/facilitators and impact of participation, where reported in individual studies. The benefit of PPI in stroke research will be recorded where the study details changes (added value) in research methods/activities; interpretation of results, dissemination activities or in policy/practice that was attributed to experience-based involvement. Evaluation of impact will be guided by appraisal criteria²⁵which considers whether the paper discusses the difference PPI has made to the research activities and the impact of user involvement on the research project (e.g. length of study, financial implications of involvement activities, cost-benefit analyses), and whether benefits claimed are supported by examples from the research project.

The diversity of the experience-based stroke research partners will be examined for sex, ethnicity, stroke type, disability level and will consider issues that may marginalise specific stroke groups from PPI activities including notable mobility and/or communication issues.

Point 8: Discussion: It is mentioned that a scoping review objective is to generate gaps in existing research - but gaps will not be explored in this review so this point may need revision in the context of this protocol.
In response to Point 8 – apologies it was not the intention to suggest gaps will be explored but rather by comprehensively mapping current stroke research practice, gaps may be identified thereby providing some key opportunities for future research.
This is now included in the manuscript as:
Gaps in current stroke research practices may be identified thereby providing some key opportunities and recommendations for future research.

Point 9: Final point - Could PRISMA-P checklist with location of reporting elements be uploaded as extended data.
In response to Point 9 - A checklist is now included in a supplemental information file
Thank you for your positive comments and detailed points for consideration.
Please see below detailed responses:
Point 1: I would suggest that the aim is reframed as a single overarching protocol aim, rather than how it is numbered currently
In response to Point 1 – Thank you, numbering has been removed as suggested.
This now reads as below:
The overarching aim of this review is to identify and describe current practices of PPI in stroke research. Specifically, this review will focus on the nature, design and type/s of studies that involve patients and/or members of the public in the planning, conduct and/or dissemination of stroke research, and explore how PPI has been conceptualised in stroke research.

Point 2: This is more a formatting issue - but could the objectives be numbered
In response to Point 2 – I have reformatted the objectives in a numbered sequence.
This now reads as:
Objectives:

map the volume, type and range of PPI approaches in stroke research

profile PPI participants and examine representativeness of participants from an equality, diversity and inclusion (EDI) perspective

map PPI research activities against the stroke research cycle

collate reported enablers and barriers to PPI application in stroke research

explore the impact of PPI on stroke research, clinical practice and health policy

Point 3 : It is useful to refer to seminar papers in the area of scoping review methodology - Arksey and O' Malley and Levac which are included but I would also suggest referring to Chapter 11 of the JBI Manual for Evidence Synthesis as a methodological framework for this scoping review. I see the JBI data extraction tool was listed but this Chapter is worth reading in detail, also using it as a framework and and referring to it in the context of scoping review methodology.
In response to Point 3 – thank you I have read this chapter in the JBI manual in detail and with great interest.
This now reads in the manuscript:
The review will conform to the 5 stages of the Arksey & O'Malley framework for scoping studies ¹⁸ refined by Levac ¹⁹ and the methodological framework described by Peters in the JBI Manual for Evidence Synthesis (Chapter 11). ²⁰

Point 4: In stage 2: 'Leanus' (grey literature) is mentioned in the abstract and methodology - I think this should be spelt 'Lenus', Will reference list of included studies/sources of evidence be checked for possible inclusions. An indicative search strategy is included but could a full search strategy for one of the electronic databases be included as extended data. Could more detail of the grey literature search be included - eg Cadth grey matters tool/others.
In response to Point 4 – (i) apologies for the spelling error; this has now been corrected in the manuscript. (ii) Reference lists will be checked and sample PubMed search strategy is included as supplementary information. (iii) Thank you I was not familiar with Cadth but will now explore this grey literature checklist tool when searching the grey literature.
The manuscript now reads:
The search will involve the electronic databases PubMed, CINAHL, EMBASE, PsychINFO and the Cochrane Database of Systematic Reviews (Supplementary file). These libraries were chosen as they will yield a broad, cross disciplinary range of studies. In addition, reference lists of included studies will be checked. To target relevant grey literature, a systematic search will be conducted in the key databases, e.g. OpenGrey and Lenus. A grey literature checklist e.g. Cadth (Canada’s drug and health technology agency), will help ensure a comprehensive search is completed.

Point 5: in Stage 3: Could it be stated that reasons for exclusions will be recorded and charted in the PRISMA flow diagram
In response to Point 5 - Thank you, I have included this detail in the manuscript which now reads:
A PRISMA flow diagram will be produced to present an overview of the identification, screening, eligibility and inclusion phases, with the reasons for exclusion of studies in the screening process provided.

Point 6: In Stage 4: Clarify if data will be extracted by one author and verified by another. Following the JBI convention, risk of bias assessment is not a necessity. Clarify whether a risk of bias assessment will take place or not.
In response to Point 6 – Thank you, I have clarified the extraction process and the manuscript now includes:
Data extraction will be completed independently by at least 2 reviewers and any discrepancies will be resolved by discussion to reach consensus. In accordance with scoping review guidelines, the quality of any study included in this review will not be assessed for risk of bias.

Point 7: In Stage 5: Specify how impact will be evaluated/charted and how representativeness of participants will be assessed from and EDI perspective.
In response to Point 7 - it is expected the process of summarising and reporting results will be an iterative process. Where individual studies provide detail, the impact will be recorded and the diversity of PPI partners will be examined. The manuscript now reads:
The extracted data will be presented in tabular format, providing a brief summary of each individual study included in the review and documenting barriers/facilitators and impact of participation, where reported in individual studies. The benefit of PPI in stroke research will be recorded where the study details changes (added value) in research methods/activities; interpretation of results, dissemination activities or in policy/practice that was attributed to experience-based involvement. Evaluation of impact will be guided by appraisal criteria²⁵which considers whether the paper discusses the difference PPI has made to the research activities and the impact of user involvement on the research project (e.g. length of study, financial implications of involvement activities, cost-benefit analyses), and whether benefits claimed are supported by examples from the research project.

The diversity of the experience-based stroke research partners will be examined for sex, ethnicity, stroke type, disability level and will consider issues that may marginalise specific stroke groups from PPI activities including notable mobility and/or communication issues.

Point 8: Discussion: It is mentioned that a scoping review objective is to generate gaps in existing research - but gaps will not be explored in this review so this point may need revision in the context of this protocol.
In response to Point 8 – apologies it was not the intention to suggest gaps will be explored but rather by comprehensively mapping current stroke research practice, gaps may be identified thereby providing some key opportunities for future research.
This is now included in the manuscript as:
Gaps in current stroke research practices may be identified thereby providing some key opportunities and recommendations for future research.

Point 9: Final point - Could PRISMA-P checklist with location of reporting elements be uploaded as extended data.
In response to Point 9 - A checklist is now included in a supplemental information file
Competing Interests: No competing interests were disclosed. Close
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Views

Reviewer Report 22 Nov 2021

Elizabeth A. Lynch, Caring Futures Institute, College of Nursing and Health Sciences, Flinders University, Adelaide, SA, Australia

Approved with Reservations

https://doi.org/10.21956/hrbopenres.14657.r30802

This scoping review will present the state of play regarding PPI in stroke research, which is an exciting concept.

In introduction, I would be tempted to provide more hard data/numbers in statements in the first paragraph

This scoping review will present the state of play regarding PPI in stroke research, which is an exciting concept.

In introduction, I would be tempted to provide more hard data/numbers in statements in the first paragraph - e.g. "many survivors" (give a number or proportion), "significant increase" (from what level) etc.
With regard to the inclusion criteria, I think there needs more detail re "Studies with a clear statement in relation to PPI activities/ initiatives which fit the principles of PPI in stroke research, irrespective of terminology" - does this need to be presented in the title? Or abstract? Or paper? Do the authors envisage reading every abstract from the initial search (which is likely to be huge) to look for PPI? Or look for this in titles which might be more feasible but more likely to miss relevant publications.
"Strong PPI engagement will be embedded in this scoping review methodology... A PPI Champion / stroke survivor contributed to the research objectives and the refining of the search strategy described in this protocol" - can you be explicit whether there is someone with lived experience of stroke in the authorship team? I think there is someone but I'm not quite sure (and if there isn't, should there be, to ensure/demonstrate strong PPI engagement?)

Is the rationale for, and objectives of, the study clearly described?

Yes
Is the study design appropriate for the research question?

Yes
Are sufficient details of the methods provided to allow replication by others?

Partly
Are the datasets clearly presented in a useable and accessible format?

Not applicable

Competing Interests: No competing interests were disclosed.

Reviewer Expertise: Stroke, rehabilitation,

I confirm that I have read this submission and believe that I have an appropriate level of expertise to confirm that it is of an acceptable scientific standard, however I have significant reservations, as outlined above.

CITE

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Author Response 28 Jul 2022

Patricia Hall, iPASTAR Collaborative Doctoral Award Programme, RCSI Division of Population Health Sciences, RCSI University of Medicine and Health Sciences, Dublin 2, D02 H903, Ireland

28 Jul 2022

Author Response

Thank you for your positive comments and detailed feedback.
Please see detailed responses below:

Point 1: In introduction, I would be tempted to provide more hard data/numbers in statements ... Continue reading Thank you for your positive comments and detailed feedback.
Please see detailed responses below:

Point 1: In introduction, I would be tempted to provide more hard data/numbers in statements in the first paragraph - e.g. "many survivors" (give a number or proportion), "significant increase" (from what level) etc.
In response to Point 1 – in the introduction I have provided further data on specific numbers relating to Ireland and Europe.
This now reads:
Stroke is a major cause of death and disability worldwide¹. Globally stroke is the second leading cause of death and third leading cause of disease burden accounting for almost 5% of disability-adjusted life years According to the latest National Audit of Stroke in Ireland (NOCA), almost 6,000 people were admitted to hospital in 2019 and 71% of those with ischaemic stroke had disabilities on discharge.
Despite advances in prevention, early recognition/diagnosis and treatment, projections indicate a significant increase in stroke events worldwide in the coming years.⁵ An ageing population contributes strongly to this increase with European predictions estimating a 34% rise in stroke cases by 2035.

Point 2. With regard to the inclusion criteria, I think there needs more detail re "Studies with a clear statement in relation to PPI activities/ initiatives which fit the principles of PPI in stroke research, irrespective of terminology" - does this need to be presented in the title? Or abstract? Or paper? Do the authors envisage reading every abstract from the initial search (which is likely to be huge) to look for PPI? Or look for this in titles which might be more feasible but more likely to miss relevant publications.
In response to Point 2 – I have clarified the inclusion criteria to make the anticipated screening process more explicit. We do not think it will be possible to identify PPI activity in stroke research only in the title and abstract. We now detail that an inclusive approach will be taken whereby if not identified by title and abstract, full manuscript review will be undertaken with a primary focus on the methodology and acknowledgement sections. This will indeed be potentially onerous but in order to be as comprehensive as possible, since PPI is often not called out in the title/abstract, we feel it is a necessary undertaking to fully address the question. However as this approach will likely generate a high volume of manuscripts to review, a publication date cut-off of 2014 will now be applied to include only studies published after the first handbook of PPI was developed for health researchers.
The inclusion criteria now states:
Studies with a clear statement in relation to PPI activities/initiatives which fit the principles of PPI in stroke research, irrespective of terminology. An inclusive approach to screening will be taken whereby if PPI is not mentioned in the title or abstract, the full text manuscript will be reviewed with particular focus on the methods and acknowledgements sections. As PPI is a relatively new concept a publication date cut-off of 2014 will be applied to include only studies published after the first handbook was developed for health researchers was published ²²
Thank you for your positive comments and detailed feedback.
Please see detailed responses below:

Point 1: In introduction, I would be tempted to provide more hard data/numbers in statements in the first paragraph - e.g. "many survivors" (give a number or proportion), "significant increase" (from what level) etc.
In response to Point 1 – in the introduction I have provided further data on specific numbers relating to Ireland and Europe.
This now reads:
Stroke is a major cause of death and disability worldwide¹. Globally stroke is the second leading cause of death and third leading cause of disease burden accounting for almost 5% of disability-adjusted life years According to the latest National Audit of Stroke in Ireland (NOCA), almost 6,000 people were admitted to hospital in 2019 and 71% of those with ischaemic stroke had disabilities on discharge.
Despite advances in prevention, early recognition/diagnosis and treatment, projections indicate a significant increase in stroke events worldwide in the coming years.⁵ An ageing population contributes strongly to this increase with European predictions estimating a 34% rise in stroke cases by 2035.

Point 2. With regard to the inclusion criteria, I think there needs more detail re "Studies with a clear statement in relation to PPI activities/ initiatives which fit the principles of PPI in stroke research, irrespective of terminology" - does this need to be presented in the title? Or abstract? Or paper? Do the authors envisage reading every abstract from the initial search (which is likely to be huge) to look for PPI? Or look for this in titles which might be more feasible but more likely to miss relevant publications.
In response to Point 2 – I have clarified the inclusion criteria to make the anticipated screening process more explicit. We do not think it will be possible to identify PPI activity in stroke research only in the title and abstract. We now detail that an inclusive approach will be taken whereby if not identified by title and abstract, full manuscript review will be undertaken with a primary focus on the methodology and acknowledgement sections. This will indeed be potentially onerous but in order to be as comprehensive as possible, since PPI is often not called out in the title/abstract, we feel it is a necessary undertaking to fully address the question. However as this approach will likely generate a high volume of manuscripts to review, a publication date cut-off of 2014 will now be applied to include only studies published after the first handbook of PPI was developed for health researchers.
The inclusion criteria now states:
Studies with a clear statement in relation to PPI activities/initiatives which fit the principles of PPI in stroke research, irrespective of terminology. An inclusive approach to screening will be taken whereby if PPI is not mentioned in the title or abstract, the full text manuscript will be reviewed with particular focus on the methods and acknowledgements sections. As PPI is a relatively new concept a publication date cut-off of 2014 will be applied to include only studies published after the first handbook was developed for health researchers was published ²²
Competing Interests: No competing interests were disclosed. Close
Report a concern
Author Response 28 Jul 2022

Patricia Hall, iPASTAR Collaborative Doctoral Award Programme, RCSI Division of Population Health Sciences, RCSI University of Medicine and Health Sciences, Dublin 2, D02 H903, Ireland

28 Jul 2022

Author Response

Point 3 : "Strong PPI engagement will be embedded in this scoping review methodology... A PPI Champion / stroke survivor contributed to the research objectives and the refining of the ... Continue reading Point 3 : "Strong PPI engagement will be embedded in this scoping review methodology... A PPI Champion / stroke survivor contributed to the research objectives and the refining of the search strategy described in this protocol" - can you be explicit whether there is someone with lived experience of stroke in the authorship team? I think there is someone but I'm not quite sure (and if there isn't, should there be, to ensure/demonstrate strong PPI engagement?)
In response to Point 3 – apologies I did not make it clear that one of the authors has indeed the lived experience of stroke. I have corrected this omission as it is very important to us to demonstrate our strongly embedded PPI.
This now reads in the manuscript:
A co-author on this study protocol has personal experience of stroke (JH)and acts as our stroke champion on all PPI issues, contributing to the research development.
Point 3 : "Strong PPI engagement will be embedded in this scoping review methodology... A PPI Champion / stroke survivor contributed to the research objectives and the refining of the search strategy described in this protocol" - can you be explicit whether there is someone with lived experience of stroke in the authorship team? I think there is someone but I'm not quite sure (and if there isn't, should there be, to ensure/demonstrate strong PPI engagement?)
In response to Point 3 – apologies I did not make it clear that one of the authors has indeed the lived experience of stroke. I have corrected this omission as it is very important to us to demonstrate our strongly embedded PPI.
This now reads in the manuscript:
A co-author on this study protocol has personal experience of stroke (JH)and acts as our stroke champion on all PPI issues, contributing to the research development.
Competing Interests: No competing interests were disclosed. Close
Report a concern
Respond or Comment

COMMENTS ON THIS REPORT

Author Response 28 Jul 2022

Patricia Hall, iPASTAR Collaborative Doctoral Award Programme, RCSI Division of Population Health Sciences, RCSI University of Medicine and Health Sciences, Dublin 2, D02 H903, Ireland

28 Jul 2022

Author Response

Thank you for your positive comments and detailed feedback.
Please see detailed responses below:

Point 1: In introduction, I would be tempted to provide more hard data/numbers in statements ... Continue reading Thank you for your positive comments and detailed feedback.
Please see detailed responses below:

Point 1: In introduction, I would be tempted to provide more hard data/numbers in statements in the first paragraph - e.g. "many survivors" (give a number or proportion), "significant increase" (from what level) etc.
In response to Point 1 – in the introduction I have provided further data on specific numbers relating to Ireland and Europe.
This now reads:
Stroke is a major cause of death and disability worldwide¹. Globally stroke is the second leading cause of death and third leading cause of disease burden accounting for almost 5% of disability-adjusted life years According to the latest National Audit of Stroke in Ireland (NOCA), almost 6,000 people were admitted to hospital in 2019 and 71% of those with ischaemic stroke had disabilities on discharge.
Despite advances in prevention, early recognition/diagnosis and treatment, projections indicate a significant increase in stroke events worldwide in the coming years.⁵ An ageing population contributes strongly to this increase with European predictions estimating a 34% rise in stroke cases by 2035.

Point 2. With regard to the inclusion criteria, I think there needs more detail re "Studies with a clear statement in relation to PPI activities/ initiatives which fit the principles of PPI in stroke research, irrespective of terminology" - does this need to be presented in the title? Or abstract? Or paper? Do the authors envisage reading every abstract from the initial search (which is likely to be huge) to look for PPI? Or look for this in titles which might be more feasible but more likely to miss relevant publications.
In response to Point 2 – I have clarified the inclusion criteria to make the anticipated screening process more explicit. We do not think it will be possible to identify PPI activity in stroke research only in the title and abstract. We now detail that an inclusive approach will be taken whereby if not identified by title and abstract, full manuscript review will be undertaken with a primary focus on the methodology and acknowledgement sections. This will indeed be potentially onerous but in order to be as comprehensive as possible, since PPI is often not called out in the title/abstract, we feel it is a necessary undertaking to fully address the question. However as this approach will likely generate a high volume of manuscripts to review, a publication date cut-off of 2014 will now be applied to include only studies published after the first handbook of PPI was developed for health researchers.
The inclusion criteria now states:
Studies with a clear statement in relation to PPI activities/initiatives which fit the principles of PPI in stroke research, irrespective of terminology. An inclusive approach to screening will be taken whereby if PPI is not mentioned in the title or abstract, the full text manuscript will be reviewed with particular focus on the methods and acknowledgements sections. As PPI is a relatively new concept a publication date cut-off of 2014 will be applied to include only studies published after the first handbook was developed for health researchers was published ²²
Thank you for your positive comments and detailed feedback.
Please see detailed responses below:

Point 1: In introduction, I would be tempted to provide more hard data/numbers in statements in the first paragraph - e.g. "many survivors" (give a number or proportion), "significant increase" (from what level) etc.
In response to Point 1 – in the introduction I have provided further data on specific numbers relating to Ireland and Europe.
This now reads:
Stroke is a major cause of death and disability worldwide¹. Globally stroke is the second leading cause of death and third leading cause of disease burden accounting for almost 5% of disability-adjusted life years According to the latest National Audit of Stroke in Ireland (NOCA), almost 6,000 people were admitted to hospital in 2019 and 71% of those with ischaemic stroke had disabilities on discharge.
Despite advances in prevention, early recognition/diagnosis and treatment, projections indicate a significant increase in stroke events worldwide in the coming years.⁵ An ageing population contributes strongly to this increase with European predictions estimating a 34% rise in stroke cases by 2035.

Point 2. With regard to the inclusion criteria, I think there needs more detail re "Studies with a clear statement in relation to PPI activities/ initiatives which fit the principles of PPI in stroke research, irrespective of terminology" - does this need to be presented in the title? Or abstract? Or paper? Do the authors envisage reading every abstract from the initial search (which is likely to be huge) to look for PPI? Or look for this in titles which might be more feasible but more likely to miss relevant publications.
In response to Point 2 – I have clarified the inclusion criteria to make the anticipated screening process more explicit. We do not think it will be possible to identify PPI activity in stroke research only in the title and abstract. We now detail that an inclusive approach will be taken whereby if not identified by title and abstract, full manuscript review will be undertaken with a primary focus on the methodology and acknowledgement sections. This will indeed be potentially onerous but in order to be as comprehensive as possible, since PPI is often not called out in the title/abstract, we feel it is a necessary undertaking to fully address the question. However as this approach will likely generate a high volume of manuscripts to review, a publication date cut-off of 2014 will now be applied to include only studies published after the first handbook of PPI was developed for health researchers.
The inclusion criteria now states:
Studies with a clear statement in relation to PPI activities/initiatives which fit the principles of PPI in stroke research, irrespective of terminology. An inclusive approach to screening will be taken whereby if PPI is not mentioned in the title or abstract, the full text manuscript will be reviewed with particular focus on the methods and acknowledgements sections. As PPI is a relatively new concept a publication date cut-off of 2014 will be applied to include only studies published after the first handbook was developed for health researchers was published ²²
Competing Interests: No competing interests were disclosed. Close
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Author Response 28 Jul 2022

Patricia Hall, iPASTAR Collaborative Doctoral Award Programme, RCSI Division of Population Health Sciences, RCSI University of Medicine and Health Sciences, Dublin 2, D02 H903, Ireland

28 Jul 2022

Author Response

Point 3 : "Strong PPI engagement will be embedded in this scoping review methodology... A PPI Champion / stroke survivor contributed to the research objectives and the refining of the ... Continue reading Point 3 : "Strong PPI engagement will be embedded in this scoping review methodology... A PPI Champion / stroke survivor contributed to the research objectives and the refining of the search strategy described in this protocol" - can you be explicit whether there is someone with lived experience of stroke in the authorship team? I think there is someone but I'm not quite sure (and if there isn't, should there be, to ensure/demonstrate strong PPI engagement?)
In response to Point 3 – apologies I did not make it clear that one of the authors has indeed the lived experience of stroke. I have corrected this omission as it is very important to us to demonstrate our strongly embedded PPI.
This now reads in the manuscript:
A co-author on this study protocol has personal experience of stroke (JH)and acts as our stroke champion on all PPI issues, contributing to the research development.
Point 3 : "Strong PPI engagement will be embedded in this scoping review methodology... A PPI Champion / stroke survivor contributed to the research objectives and the refining of the search strategy described in this protocol" - can you be explicit whether there is someone with lived experience of stroke in the authorship team? I think there is someone but I'm not quite sure (and if there isn't, should there be, to ensure/demonstrate strong PPI engagement?)
In response to Point 3 – apologies I did not make it clear that one of the authors has indeed the lived experience of stroke. I have corrected this omission as it is very important to us to demonstrate our strongly embedded PPI.
This now reads in the manuscript:
A co-author on this study protocol has personal experience of stroke (JH)and acts as our stroke champion on all PPI issues, contributing to the research development.
Competing Interests: No competing interests were disclosed. Close
Report a concern

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VERSION 2 PUBLISHED 08 Nov 2021

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Version 2 (revision) 28 Jul 22	read
Version 1 08 Nov 21	read	read

Elizabeth A. Lynch, Flinders University, Adelaide, Australia
Julie Broderick, University of Dublin, Dublin, Ireland

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Reviewer Report

25 Views

01 Aug 2022 | for Version 2

Elizabeth A. Lynch, Caring Futures Institute, College of Nursing and Health Sciences, Flinders University, Adelaide, SA, Australia

25 Views Cite this report Responses(0)

Approved

Great work - authors have responded and addressed all queries in full

Competing Interests

No competing interests were disclosed.

Reviewer Expertise

Stroke, rehabilitation

I confirm that I have read this submission and believe that I have an appropriate level of expertise to confirm that it is of an acceptable scientific standard.

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Reviewer Report

40 Views

30 May 2022 | for Version 1

Julie Broderick, Discipline of Physiotherapy, School of Medicine, Trinity College Dublin, University of Dublin, Dublin, Ireland

40 Views Cite this report Responses(1)

Approved

I would suggest that the aim is reframed as a single overarching protocol aim, rather than how it is numbered currently
This is more a formatting issue - but could the objectives be numbered
It is useful to refer to seminar papers in the area of scoping review methodology - Arksey and O' Malley and Levac which are included but I would also suggest referring to Chapter 11 of the JBI Manual for Evidence Synthesis as a methodological framework for this scoping review. I see the JBI data extraction tool was listed but this Chapter is worth reading in detail, also using it as a framework and referring to it in the context of scoping review methodology.
In stage 2: 'Leanus' (grey literature) is mentioned in the abstract and methodology - I think this should be spelt 'Lenus', Will reference list of included studies/sources of evidence be checked for possible inclusions. An indicative search strategy is included but could a full search strategy for one of the electronic databases be included as extended data. Could more detail of the grey literature search be included - eg Cadth grey matters tool/others.
in Stage 3: Could it be stated that reasons for exclusions will be recorded and charted in the PRISMA flow diagram
In Stage 4: Clarify if data will be extracted by one author and verified by another. Following the JBI convention, risk of bias assessment is not a necessity. Clarify whether a risk of bias assessment will take place or not.
In Stage 5: Specify how impact will be evaluated/charted and how representativeness of participants will be assessed from an EDI perspective.
Discussion: It is mentioned that a scoping review objective is to generate gaps in existing research - but gaps will not be explored in this review so this point may need revision in the context of this protocol.
Final point - Could PRISMA-P checklist with location of reporting elements be uploaded as extended data.

Is the rationale for, and objectives of, the study clearly described?

Yes
Is the study design appropriate for the research question?

Yes
Are sufficient details of the methods provided to allow replication by others?

Yes
Are the datasets clearly presented in a useable and accessible format?

Partly

Competing Interests

No competing interests were disclosed.

Reviewer Expertise

Research in physical functioning across chronic diseases with a focus on socially excluded populations. Evidence synthesis.

I confirm that I have read this submission and believe that I have an appropriate level of expertise to confirm that it is of an acceptable scientific standard.

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Author Response

28 Jul 2022

Patricia Hall, iPASTAR Collaborative Doctoral Award Programme, RCSI Division of Population Health Sciences, RCSI University of Medicine and Health Sciences, Dublin 2, D02 H903, Ireland

Thank you for your positive comments and detailed points for consideration.
Please see below detailed responses:
Point 1: I would suggest that the aim is reframed as a single overarching protocol aim, rather than how it is numbered currently
In response to Point 1 – Thank you, numbering has been removed as suggested.
This now reads as below:
The overarching aim of this review is to identify and describe current practices of PPI in stroke research. Specifically, this review will focus on the nature, design and type/s of studies that involve patients and/or members of the public in the planning, conduct and/or dissemination of stroke research, and explore how PPI has been conceptualised in stroke research.

Point 2: This is more a formatting issue - but could the objectives be numbered
In response to Point 2 – I have reformatted the objectives in a numbered sequence.
This now reads as:
Objectives:

map the volume, type and range of PPI approaches in stroke research
profile PPI participants and examine representativeness of participants from an equality, diversity and inclusion (EDI) perspective
map PPI research activities against the stroke research cycle
collate reported enablers and barriers to PPI application in stroke research
explore the impact of PPI on stroke research, clinical practice and health policy

Point 3 : It is useful to refer to seminar papers in the area of scoping review methodology - Arksey and O' Malley and Levac which are included but I would also suggest referring to Chapter 11 of the JBI Manual for Evidence Synthesis as a methodological framework for this scoping review. I see the JBI data extraction tool was listed but this Chapter is worth reading in detail, also using it as a framework and and referring to it in the context of scoping review methodology.
In response to Point 3 – thank you I have read this chapter in the JBI manual in detail and with great interest.
This now reads in the manuscript:
The review will conform to the 5 stages of the Arksey & O'Malley framework for scoping studies ¹⁸ refined by Levac ¹⁹ and the methodological framework described by Peters in the JBI Manual for Evidence Synthesis (Chapter 11). ²⁰

Point 4: In stage 2: 'Leanus' (grey literature) is mentioned in the abstract and methodology - I think this should be spelt 'Lenus', Will reference list of included studies/sources of evidence be checked for possible inclusions. An indicative search strategy is included but could a full search strategy for one of the electronic databases be included as extended data. Could more detail of the grey literature search be included - eg Cadth grey matters tool/others.
In response to Point 4 – (i) apologies for the spelling error; this has now been corrected in the manuscript. (ii) Reference lists will be checked and sample PubMed search strategy is included as supplementary information. (iii) Thank you I was not familiar with Cadth but will now explore this grey literature checklist tool when searching the grey literature.
The manuscript now reads:
The search will involve the electronic databases PubMed, CINAHL, EMBASE, PsychINFO and the Cochrane Database of Systematic Reviews (Supplementary file). These libraries were chosen as they will yield a broad, cross disciplinary range of studies. In addition, reference lists of included studies will be checked. To target relevant grey literature, a systematic search will be conducted in the key databases, e.g. OpenGrey and Lenus. A grey literature checklist e.g. Cadth (Canada’s drug and health technology agency), will help ensure a comprehensive search is completed.

Point 5: in Stage 3: Could it be stated that reasons for exclusions will be recorded and charted in the PRISMA flow diagram
In response to Point 5 - Thank you, I have included this detail in the manuscript which now reads:
A PRISMA flow diagram will be produced to present an overview of the identification, screening, eligibility and inclusion phases, with the reasons for exclusion of studies in the screening process provided.

Point 6: In Stage 4: Clarify if data will be extracted by one author and verified by another. Following the JBI convention, risk of bias assessment is not a necessity. Clarify whether a risk of bias assessment will take place or not.
In response to Point 6 – Thank you, I have clarified the extraction process and the manuscript now includes:
Data extraction will be completed independently by at least 2 reviewers and any discrepancies will be resolved by discussion to reach consensus. In accordance with scoping review guidelines, the quality of any study included in this review will not be assessed for risk of bias.

Point 7: In Stage 5: Specify how impact will be evaluated/charted and how representativeness of participants will be assessed from and EDI perspective.
In response to Point 7 - it is expected the process of summarising and reporting results will be an iterative process. Where individual studies provide detail, the impact will be recorded and the diversity of PPI partners will be examined. The manuscript now reads:
The extracted data will be presented in tabular format, providing a brief summary of each individual study included in the review and documenting barriers/facilitators and impact of participation, where reported in individual studies. The benefit of PPI in stroke research will be recorded where the study details changes (added value) in research methods/activities; interpretation of results, dissemination activities or in policy/practice that was attributed to experience-based involvement. Evaluation of impact will be guided by appraisal criteria²⁵which considers whether the paper discusses the difference PPI has made to the research activities and the impact of user involvement on the research project (e.g. length of study, financial implications of involvement activities, cost-benefit analyses), and whether benefits claimed are supported by examples from the research project.

The diversity of the experience-based stroke research partners will be examined for sex, ethnicity, stroke type, disability level and will consider issues that may marginalise specific stroke groups from PPI activities including notable mobility and/or communication issues.

Point 8: Discussion: It is mentioned that a scoping review objective is to generate gaps in existing research - but gaps will not be explored in this review so this point may need revision in the context of this protocol.
In response to Point 8 – apologies it was not the intention to suggest gaps will be explored but rather by comprehensively mapping current stroke research practice, gaps may be identified thereby providing some key opportunities for future research.
This is now included in the manuscript as:
Gaps in current stroke research practices may be identified thereby providing some key opportunities and recommendations for future research.

Point 9: Final point - Could PRISMA-P checklist with location of reporting elements be uploaded as extended data.
In response to Point 9 - A checklist is now included in a supplemental information file

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Competing Interests

No competing interests were disclosed.

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Reviewer Report

50 Views

22 Nov 2021 | for Version 1

Elizabeth A. Lynch, Caring Futures Institute, College of Nursing and Health Sciences, Flinders University, Adelaide, SA, Australia

50 Views Cite this report Responses(2)

Approved With Reservations

This scoping review will present the state of play regarding PPI in stroke research, which is an exciting concept.

In introduction, I would be tempted to provide more hard data/numbers in statements in the first paragraph - e.g. "many survivors" (give a number or proportion), "significant increase" (from what level) etc.
With regard to the inclusion criteria, I think there needs more detail re "Studies with a clear statement in relation to PPI activities/ initiatives which fit the principles of PPI in stroke research, irrespective of terminology" - does this need to be presented in the title? Or abstract? Or paper? Do the authors envisage reading every abstract from the initial search (which is likely to be huge) to look for PPI? Or look for this in titles which might be more feasible but more likely to miss relevant publications.
"Strong PPI engagement will be embedded in this scoping review methodology... A PPI Champion / stroke survivor contributed to the research objectives and the refining of the search strategy described in this protocol" - can you be explicit whether there is someone with lived experience of stroke in the authorship team? I think there is someone but I'm not quite sure (and if there isn't, should there be, to ensure/demonstrate strong PPI engagement?)

Is the rationale for, and objectives of, the study clearly described?

Yes
Is the study design appropriate for the research question?

Yes
Are sufficient details of the methods provided to allow replication by others?

Partly
Are the datasets clearly presented in a useable and accessible format?

Not applicable

Competing Interests

No competing interests were disclosed.

Reviewer Expertise

Stroke, rehabilitation,

Respond to this report

Responses (2)

Author Response

28 Jul 2022

Patricia Hall, iPASTAR Collaborative Doctoral Award Programme, RCSI Division of Population Health Sciences, RCSI University of Medicine and Health Sciences, Dublin 2, D02 H903, Ireland

Thank you for your positive comments and detailed feedback.
Please see detailed responses below:

Point 1: In introduction, I would be tempted to provide more hard data/numbers in statements in the first paragraph - e.g. "many survivors" (give a number or proportion), "significant increase" (from what level) etc.
In response to Point 1 – in the introduction I have provided further data on specific numbers relating to Ireland and Europe.
This now reads:
Stroke is a major cause of death and disability worldwide¹. Globally stroke is the second leading cause of death and third leading cause of disease burden accounting for almost 5% of disability-adjusted life years According to the latest National Audit of Stroke in Ireland (NOCA), almost 6,000 people were admitted to hospital in 2019 and 71% of those with ischaemic stroke had disabilities on discharge.
Despite advances in prevention, early recognition/diagnosis and treatment, projections indicate a significant increase in stroke events worldwide in the coming years.⁵ An ageing population contributes strongly to this increase with European predictions estimating a 34% rise in stroke cases by 2035.

Point 2. With regard to the inclusion criteria, I think there needs more detail re "Studies with a clear statement in relation to PPI activities/ initiatives which fit the principles of PPI in stroke research, irrespective of terminology" - does this need to be presented in the title? Or abstract? Or paper? Do the authors envisage reading every abstract from the initial search (which is likely to be huge) to look for PPI? Or look for this in titles which might be more feasible but more likely to miss relevant publications.
In response to Point 2 – I have clarified the inclusion criteria to make the anticipated screening process more explicit. We do not think it will be possible to identify PPI activity in stroke research only in the title and abstract. We now detail that an inclusive approach will be taken whereby if not identified by title and abstract, full manuscript review will be undertaken with a primary focus on the methodology and acknowledgement sections. This will indeed be potentially onerous but in order to be as comprehensive as possible, since PPI is often not called out in the title/abstract, we feel it is a necessary undertaking to fully address the question. However as this approach will likely generate a high volume of manuscripts to review, a publication date cut-off of 2014 will now be applied to include only studies published after the first handbook of PPI was developed for health researchers.
The inclusion criteria now states:
Studies with a clear statement in relation to PPI activities/initiatives which fit the principles of PPI in stroke research, irrespective of terminology. An inclusive approach to screening will be taken whereby if PPI is not mentioned in the title or abstract, the full text manuscript will be reviewed with particular focus on the methods and acknowledgements sections. As PPI is a relatively new concept a publication date cut-off of 2014 will be applied to include only studies published after the first handbook was developed for health researchers was published ²²

View more View less

Competing Interests

No competing interests were disclosed.

Author Response

28 Jul 2022

Patricia Hall, iPASTAR Collaborative Doctoral Award Programme, RCSI Division of Population Health Sciences, RCSI University of Medicine and Health Sciences, Dublin 2, D02 H903, Ireland

Point 3 : "Strong PPI engagement will be embedded in this scoping review methodology... A PPI Champion / stroke survivor contributed to the research objectives and the refining of the search strategy described in this protocol" - can you be explicit whether there is someone with lived experience of stroke in the authorship team? I think there is someone but I'm not quite sure (and if there isn't, should there be, to ensure/demonstrate strong PPI engagement?)
In response to Point 3 – apologies I did not make it clear that one of the authors has indeed the lived experience of stroke. I have corrected this omission as it is very important to us to demonstrate our strongly embedded PPI.
This now reads in the manuscript:
A co-author on this study protocol has personal experience of stroke (JH)and acts as our stroke champion on all PPI issues, contributing to the research development.

View more View less

Competing Interests

No competing interests were disclosed.

Alongside their report, reviewers assign a status to the article:

Approved - the paper is scientifically sound in its current form and only minor, if any, improvements are suggested

Approved with reservations - A number of small changes, sometimes more significant revisions are required to address specific details and improve the papers academic merit.

Not approved - fundamental flaws in the paper seriously undermine the findings and conclusions

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[2] 2. Norrving B, Barrick J, Davalos A, et al.: Action Plan for Stroke in Europe 2018-2030. Eur Stroke J. 2018; 3(4): 309–36. PubMed Abstract | Publisher Full Text | Free Full Text

[3] 3. D'Alisa S, Baudo S, Mauro A, et al.: How does stroke restrict participation in long-term post-stroke survivors? Acta Neurol Scand. 2005; 112(3): 157–62. PubMed Abstract | Publisher Full Text

[4] 4. Lou S, Carstensen K, Jørgensen CR, et al.: Stroke patients' and informal carers' experiences with life after stroke: an overview of qualitative systematic reviews. Disabil Rehabil. 2017; 39(3): 301–13. PubMed Abstract | Publisher Full Text

[5] 5. Hanley B, Bradburn J, Barnes M, et al.: Involving the public in NHS public health, and social care research: briefing notes for researchers. Involve; 2004. Reference Source

[6] 6. Health Research Board. Reference Source

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[10] 10. McKevitt C, Fudge N, Wolfe C: What is involvement in research and what does it achieve? Reflections on a pilot study of the personal costs of stroke. Health Expect. 2010; 13(1): 86–94. PubMed Abstract | Publisher Full Text | Free Full Text

[11] 11. Ní Shé É, Cassidy J, Davies C, et al.: Minding the gap: identifying values to enable public and patient involvement at the pre-commencement stage of research projects. Res Involv Engagem. 2020; 6(1): 46. PubMed Abstract | Publisher Full Text | Free Full Text

[12] 12. Harrison M, Palmer R: Exploring patient and public involvement in stroke research: a qualitative study. Disabil Rehabil. 2015; 37(23): 2174–83. PubMed Abstract | Publisher Full Text

[13] 13. Stroke Association: Shaping stroke research to rebuild lives. 2021. Reference Source

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[17] 17. Tricco AC, Lillie E, Zarin W, et al.: PRISMA extension for scoping reviews (PRISMA-ScR): checklist and explanation. Ann Intern Med. 2018; 169(7): 467–473. PubMed Abstract | Publisher Full Text

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Patient and public involvement in stroke research: a scoping review protocol

Abstract

Keywords

Introduction

Protocol

Aims and objectives

Design

Figure 1. Research cycle framework^18,19.

Stage 1: Identify the research question

Table 1. Inclusion/exclusion criteria.

Stage 2: Identify the relevant studies

Table 2. Sample search strategy.

Stage 3: Study selection

Stage 4: Charting the data

Stage 5: Collating, summarising and reporting the results

Stage 6: Stakeholder consultation

Study status

Discussion/conclusion

Data availability

Acknowledgements

References

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Patient and public involvement in stroke research: a scoping review protocol

Abstract

Keywords

Introduction

Protocol

Aims and objectives

Design

Figure 1. Research cycle framework18,19.

Stage 1: Identify the research question

Table 1. Inclusion/exclusion criteria.

Stage 2: Identify the relevant studies

Table 2. Sample search strategy.

Stage 3: Study selection

Stage 4: Charting the data

Stage 5: Collating, summarising and reporting the results

Stage 6: Stakeholder consultation

Study status

Discussion/conclusion

Data availability

Acknowledgements

References

Comments on this article Comments (0)

Open Peer Review

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Reviewer Reports

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Figure 1. Research cycle framework^18,19.