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

Patricia Hall, Conceptualization , Methodology , Project Administration , Writing – Original Draft Preparation , Writing – Review & Editing , a, 1, 2 Thilo Kroll, Conceptualization , Methodology , Project Administration , Supervision , Writing – Review & Editing , 1, 3, 4, 5 Julianne Hickey, Methodology , Validation , Writing – Review & Editing , 1, 6 Diarmuid Stokes, Methodology , Writing – Review & Editing , 7 and Olive Lennon, Conceptualization , Methodology , Project Administration , Supervision , Writing – Review & Editing 1, 2

Patricia Hall

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

Thilo Kroll

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

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

Julianne Hickey

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

6 iPASTAR PPI Champion, Dublin, Ireland

Diarmuid Stokes

7 UCD Library, University College Dublin, Belfield, Dublin 4, Ireland

Olive Lennon

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

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

This is an open access article distributed under the terms of the Creative Commons Attribution Licence, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Associated Data

Underlying data

No data are associated with this article.

Extended data

Open Science Framework: Patient and public involvement in stroke research: a scoping review protocol. https://doi.org/10.17605/OSF.IO/FP65E 23

This project contains the following extended data:

Data are available under the terms of the Creative Commons Zero "No rights reserved" data waiver (CC0 1.0 Public domain dedication).

Version Changes

Revised. Amendments from Version 1

The protocol has been revised following invaluable feedback from two reviewers. In the introduction further clarity has been provided relating to Irish and European data on the burden of stroke and predicted rise in stroke cases. We have reformatted our aims and objectives and further referenced our methodological framework as suggested. We have clarified the inclusion criteria in anticipation of our inclusive approach and the potentially onerous task of identifying PPI activity in stroke research. The PubMed search strategy string and a PRISMA_ScR checklist has been included as Extended data. Further information is provided on hand searches and the use of a grey literature checklist. Reasons for exclusion will be included in a PRISMA flow diagram. We updated Stage 5 to explain our data extraction process, how we propose to evaluate/report the impact of PPI, and the diversity of the experience-based stroke research partners. We added further information on our stakeholder engagement, identifying a co-author as someone with lived experience of stroke contributing to the research process. In the discussion section we clarified our intention to map the concept of PPI in current stroke research practices and in so doing identify any gaps which may emerge thus providing some key opportunities and recommendations for future research.

Peer Review Summary

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, Lenus) 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 may be identified thereby offering opportunities and recommendations for future priorities for PPI in stroke research.

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

Introduction

Stroke is a major cause of death and disability worldwide and many survivors live with significant disability 1 . Globally over 15 million people have a stroke each year making it the second leading cause of death worldwide and leading cause of adult disability, accounting for almost 5% of disability-adjusted life years 2, 3 . 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 4 .

Despite advances in prevention, early recognition/diagnosis and treatment, projections indicate a significant increase in stroke events worldwide in the coming years 5 . 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 6, 7 . The Stroke Action Plan for Europe identifies and aims to address the challenges facing stroke survivors and families, associated with life after stroke 5 .

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” 8 . 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 network 9 . PPI in research is considered to occur when “individuals meaningfully and actively collaborate” at one or more stages of the research process 10 . The conceptual model often used to describe this collaboration is drawn from Arnstein’s ladder of citizen participation 11 . 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 acknowledged 12 . However, there remains ambiguity in the literature on the concept and understanding of what is and what is not PPI in research 13 . 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 groups 14 . 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 process 15 . 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 care 16 . 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 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.

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