How to incorporate patient and public perspectives into the design and conduct of research

Hoddinott, Pat; Pollock, Alex; O’Cathain, Alicia; Boyer, Isabel; Taylor, Joan; Macdonald, Cynthia; Oliver, Sandy; Donovan, Jenny

doi:10.12688/f1000research.15162.1

Cited by 128 publications

(151 citation statements)

References 44 publications

(50 reference statements)

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“…The level of reporting of involvement of stakeholders in systematic reviews, and the inconsistencies in which this is reported, must be improved so that guidance around how people can be involved in systematic reviews can be developed and the impact of involvement explored. This scoping review lends support to calls for high-quality training materials and examples of best practice to support active patient and public involvement and enhance the relevance, usefulness and accessibility of systematic reviews [ 2 , 16 , 18 , 61 , 63 ]. We identified a subset of 30 papers which we judged to provide a comprehensive description of stakeholder involvement in systematic reviews, and used these examples to summarise different ways in which stakeholders have been involved in systematic reviews.…”

Section: Discussionmentioning

confidence: 84%

“… Email and phone communication throughout the review. – No information provided No information provided Coon et al [ 63 ] An Expert Advisory group—involved throughout the project, including commenting on the protocol, editing draft chapters and responding to ad hoc questions. In addition, a series of four events were held: Event 1 aimed to share information and explore experiences.…”

Section: Resultsmentioning

confidence: 99%

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Stakeholder involvement in systematic reviews: a scoping review

et al. 2018

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BackgroundThere is increasing recognition that it is good practice to involve stakeholders (meaning patients, the public, health professionals and others) in systematic reviews, but limited evidence about how best to do this. We aimed to document the evidence-base relating to stakeholder involvement in systematic reviews and to use this evidence to describe how stakeholders have been involved in systematic reviews.MethodsWe carried out a scoping review, following a published protocol. We searched multiple electronic databases (2010–2016), using a stepwise searching approach, supplemented with hand searching. Two authors independently screened and discussed the first 500 abstracts and, after clarifying selection criteria, screened a further 500. Agreement on screening decisions was 97%, so screening was done by one reviewer only. Pre-planned data extraction was completed, and the comprehensiveness of the description of methods of involvement judged. Additional data extraction was completed for papers judged to have most comprehensive descriptions. Three stakeholder representatives were co-authors for this systematic review.ResultsWe included 291 papers in which stakeholders were involved in a systematic review. Thirty percent involved patients and/or carers. Thirty-two percent were from the USA, 26% from the UK and 10% from Canada. Ten percent (32 reviews) were judged to provide a comprehensive description of methods of involving stakeholders. Sixty-nine percent (22/32) personally invited people to be involved; 22% (7/32) advertised opportunities to the general population. Eighty-one percent (26/32) had between 1 and 20 face-to-face meetings, with 83% of these holding ≤ 4 meetings. Meetings lasted 1 h to ½ day. Nineteen percent (6/32) used a Delphi method, most often involving three electronic rounds. Details of ethical approval were reported by 10/32. Expenses were reported to be paid to people involved in 8/32 systematic reviews.Discussion/conclusionWe identified a relatively large number (291) of papers reporting stakeholder involvement in systematic reviews, but the quality of reporting was generally very poor. Information from a subset of papers judged to provide the best descriptions of stakeholder involvement in systematic reviews provide examples of different ways in which stakeholders have been involved in systematic reviews. These examples arguably currently provide the best available information to inform and guide decisions around the planning of stakeholder involvement within future systematic reviews. This evidence has been used to develop online learning resources.Systematic review registrationThe protocol for this systematic review was published on 21 April 2017. Publication reference: Pollock A, Campbell P, Struthers C, Synnot A, Nunn J, Hill S, Goodare H, Watts C, Morley R: Stakeholder involvement in systematic reviews: a protocol for a systematic review of methods, outcomes and effects. Research Involvement and Engagement 2017, 3:9. https://doi.org/10.1186/s40900-017-0060-4.Electronic supplement...

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Section: Discussionmentioning

confidence: 84%

Section: Resultsmentioning

confidence: 99%

Stakeholder involvement in systematic reviews: a scoping review

et al. 2018

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“…Engagement is considered multi-directional, resulting in "informed decisionmaking about the selection, conduct, and use of the research" [32]. Depending on the context, engagement may also be termed collaboration, involvement, or partnership [36]. Herein, we will use the term "stakeholder engagement."…”

Section: Engagementmentioning

confidence: 99%

Protocol for the development of guidance for stakeholder engagement in health and healthcare guideline development and implementation

et al. 2020

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Background: Stakeholder engagement has become widely accepted as a necessary component of guideline development and implementation. While frameworks for developing guidelines express the need for those potentially affected by guideline recommendations to be involved in their development, there is a lack of consensus on how this should be done in practice. Further, there is a lack of guidance on how to equitably and meaningfully engage multiple stakeholders. We aim to develop guidance for the meaningful and equitable engagement of multiple stakeholders in guideline development and implementation. Methods: This will be a multi-stage project. The first stage is to conduct a series of four systematic reviews. These will (1) describe existing guidance and methods for stakeholder engagement in guideline development and implementation, (2) characterize barriers and facilitators to stakeholder engagement in guideline development and implementation, (3) explore the impact of stakeholder engagement on guideline development and implementation, and (4) identify issues related to conflicts of interest when engaging multiple stakeholders in guideline development and implementation.Discussion: We will collaborate with our multiple and diverse stakeholders to develop guidance for multi-stakeholder engagement in guideline development and implementation. We will use the results of the systematic reviews to develop a candidate list of draft guidance recommendations and will seek broad feedback on the draft guidance via an online survey of guideline developers and external stakeholders. An invited group of representatives from all stakeholder groups will discuss the results of the survey at a consensus meeting which will inform the development of the final guidance papers. Our overall goal is to improve the development of guidelines through meaningful and equitable multi-stakeholder engagement, and subsequently to improve health outcomes and reduce inequities in health.

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“…A recurring theme from researchers is a lack of peer‐to‐peer learning in this space. Even when a researcher may understand the concept of PPI, its implementation—even with the vast array of available ‘toolkits’—can be challenging …”

Section: Introductionmentioning

confidence: 99%

Laying the groundwork: Building relationships for public and patient involvement in pre‐clinical paediatric research

Costello¹,

Dorris

2019

Health Expectations

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Context: Public and patient involvement is increasingly becoming an expectation of research funders and policy makers. Not all areas of health research are public-facing.Here, we outline an approach for building the skills and developing the relationships required for downstream public and patient involvement in pre-clinical adolescent rheumatology research.Objective: To design a methodology for improving researcher-adolescent communications specifically aimed at mutual relationship building for PPI. Deliberate and effective preparation in advance of research involvement to improve the downstream success of that involvement. Design: A research seminar and research skills workshop conducted entirely in 'plainEnglish' for adolescents and their siblings aged 10-20. Upskilling of pre-clinical researchers for effective public involvement. Setting and participants: Study co-design between the voluntary charity IrishChildren's Arthritis Network and the academic research centre UCD Centre for Arthritis Research. Fifteen adolescents aged 10-20 years old living with arthritis, four pre-clinical researchers and one qualitative researcher investigating adolescent or paediatric arthritis. Main variables studied:Relationship building and communications for effective downstream public involvement in pre-clinical and laboratory research. Results:The methodology outlined here was received extremely positively. Both researchers and adolescents living with arthritis felt more comfortable communicating, more knowledgeable about juvenile arthritis and research, and more able to engage in co-operative dialogue.Discussion: Engaging early, considering the needs of the community and developing appropriate involvement methodology can enable involvement in pre-clinical research.Conclusions: Dedicating resources to building relationships and skills necessary for co-operative research involvement can overcome some of the barriers to public involvement in pre-clinical and laboratory-based research.

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How to incorporate patient and public perspectives into the design and conduct of research

Cited by 128 publications

References 44 publications

Stakeholder involvement in systematic reviews: a scoping review

Stakeholder involvement in systematic reviews: a scoping review

Protocol for the development of guidance for stakeholder engagement in health and healthcare guideline development and implementation

Laying the groundwork: Building relationships for public and patient involvement in pre‐clinical paediatric research

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