Co-producing an online patient public community research hub : a qualitative study exploring the perspectives of national institute for health research (NIHR) research champions in England

Background: Patient and Public Involvement and Engagement (PPIE) should be embedded as part of researchers’ everyday practice. However, this can be challenging. Creating a digital presence for PPIE as part of Higher Education Institutes’ (HEIs) infrastructure may be one way of supporting this. This can support how information is made available to patients and members of the public, but relatively little is known about how HEIs can best do this. Our aim was to develop a university website for patients and members of the public to learn about ways to get actively involved in research and be able to access the results of health and social care research. Methods: This project involved working as partners with five National Institute for Health and Care Research (NIHR) Research Champions. NIHR Research Champions are volunteers who raise awareness and share experiences about health and social care research. Content of a prototype Patient Public Community Research Hub website was co-produced with the Research Champions, and then 15 NIHR Research Champions from across England were asked for their views about the website. Findings: The information collected told us that the Patient Public Community Research Hub was viewed as being beneficial for increasing visibility of PPIE opportunities and sharing the findings of studies though needs further work: to make the information more user-friendly; to improve the methods for directing people to the site and to create new ways of connecting with people. It provides a foundation for further co-development and evaluation. A set of recommendations has been developed that may be of benefit to other HEIs and organisations who are committed to working with patients and members of the public

Stakeholder involvement in a Cochrane review of physical rehabilitation after stroke: description and reflections

IntroductionIt is good practice to involve stakeholders in systematic reviews, but it is not clearhow best to involve them.AimTo describe and reflect on the stakeholder involvement within an update of aCochrane review of physical rehabilitation after stroke.MethodsA stakeholder group, comprising 15 stroke survivors, carers, and physiotherapists from across the UK, were recruited and contributed throughout the process of the review. A framework was used to describe when and how stakeholders were involved. Stakeholders provided feedback on their involvement after meetings. An amended version of a validated patient engagement tool was used to collect reflections on the stakeholder involvement process.ResultsFive stakeholder meetings were held throughout the review process, supplemented by additional communication. Several changes were made to the review structure, analyses, and wording as a direct result of the stakeholder involvement. Stakeholders and researchers agreed that stakeholders’ contributions were taken seriously and influenced the review. Stakeholders felt that they were given the chance to share their views and that information was shared well before, during and after each meeting to help them to contribute knowledgeably in the process. Stakeholder reflections highlighted a number of key lessons relating to stakeholder involvement, including process of reflection and feedback, use of remote / virtual meetings, need for adequate time and funding, tensions experienced by clinicians, and recruitment considerations.ConclusionsWe describe and reflect on stakeholder involvement in a systematic review andexplores practical ways to support meaningful engagement during systematic review production. Our experience supports the view that coproducing reviews with stakeholders can make systematic reviews more relevant and meaningful. Our approach and experiences can be used to inform future review coproduction,supporting development of useful reviews that will improve clinical practice

Stakeholder involvement in a Cochrane review of physical rehabilitation after stroke: Description and reflections

From Wiley via Jisc Publications RouterHistory: received 2023-08-31, rev-recd 2023-11-14, accepted 2023-11-17, ppub 2023-12, epub 2023-12-01Article version: VoRPublication status: PublishedFunder: Chief Scientist Office; doi: http://dx.doi.org/10.13039/501100000589; Grant(s): HIPS/21/03Introduction: It is good practice to involve stakeholders in systematic reviews, but it is not clear how best to involve them. Aim: To describe and reflect on the stakeholder involvement within an update of a Cochrane review of physical rehabilitation after stroke. Methods: A stakeholder group, comprising 15 stroke survivors, carers, and physiotherapists from across the United Kingdom, were recruited and contributed throughout the process of the review. A framework was used to describe when and how stakeholders were involved. Stakeholders provided feedback on their involvement after meetings. An amended version of a validated patient engagement tool was used to collect reflections on the stakeholder involvement process. Results: Five stakeholder meetings were held throughout the review process, supplemented by additional communication. Several changes were made to the review structure, analyses, and wording as a direct result of the stakeholder involvement. Stakeholders and researchers agreed that stakeholders' contributions were taken seriously and influenced the review. Stakeholders felt that they were given the chance to share their views and that information was shared well before, during, and after each meeting to help them to contribute knowledgeably in the process. Stakeholder reflections highlighted a number of key lessons relating to stakeholder involvement, including process of reflection and feedback, use of remote/virtual meetings, need for adequate time and funding, tensions experienced by clinicians, and recruitment considerations. Conclusions: We describe and reflect on stakeholder involvement in a systematic review and explores practical ways to support meaningful engagement during systematic review production. Our experience supports the view that coproducing reviews with stakeholders can make systematic reviews more relevant and meaningful. Our approach and experiences can be used to inform future review coproduction, supporting development of useful reviews that will improve clinical practice.Chief Scientist Office. Grant Number: HIPS/21/03pubpu