Evaluating health service outcomes of public involvement in health service design in high-income countries: a systematic review

Lloyd, Nicola; Kenny, Amanda; Hyett, Nerida

doi:10.1186/s12913-021-06319-1

Cited by 19 publications

(19 citation statements)

References 147 publications

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“…Patient and public involvement (PPI) in research has been defined as “research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them”; it is different to ‘participation’ where people partake in a research study, and ‘engagement’ where research information and knowledge is provided and disseminated [ 1 ]. Over the last few decades, PPI has been increasingly utilized in healthcare settings [ 2 – 4 ], with examples in rheumatology including its use in clinical trials [ 5 – 10 ] and to improve services [ 3 , 11 – 16 ]. PPI has been shown to improve clinical trial design and increase patient enrolment [ 17 , 18 ].…”

Section: Introductionmentioning

confidence: 99%

Patient and public involvement in an international rheumatology translational research project: an evaluation

Souza

Johansson²,

Karlfeldt³

et al. 2022

BMC Rheumatol

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Background Rheuma Tolerance for Cure (RTCure) is a five-year international collaboration between academia, industry and patients/members of the public. It focuses on developing approaches to predict the onset of rheumatoid arthritis (RA) and designing clinical trials to reduce the risk of disease development through immune-tolerising and other treatments. We conducted a mid-term evaluation of patient and public involvement (PPI) within the project. Methods Two surveys on PPI were co-designed by the PPI Coordinator, Patient/Public Research Partners (PRPs) and a researcher. Both anonymous, electronic surveys were distributed to 61 researchers and 9 PRPs. Quantitative survey data were analysed using descriptive statistics and free text responses underwent inductive thematic analysis. Results Researcher and Patient response rates were 33% and 78%, respectively. Quantitative Researcher Survey data highlighted that (i) responding researchers represented all seven Work Packages (WPs), (ii) 40% thought PRPs had made a large or extremely large contribution to their own WPs, (iii) 55% thought PPI has had a moderate or large impact on RTCure, (iv) 75% worked with PRPs in RTCure, and (v) 60% said PRPs had affected their research thinking. Quantitative PRP Survey data highlighted that (i) PRPs were most involved in four WPs, (ii) 43% thought they had made a minor contribution to their main WP, (iii) 57% thought PPI has had a small impact on RTCure, and (iv) 57% thought they received too little feedback on the outcome of their contribution to different tasks. Four main themes were identified in both surveys: ‘PRP contributions’, ‘Experiences of PPI’, ‘Impact of PPI on RTCure’, and ‘How PPI can be improved’. Two additional themes from the Researcher Survey were ‘Impact of PPI on researchers’ and ‘Influence on Future Projects’, and from the PRP Survey were ‘Impact of PPI on PRPs’ and ‘Engagement with PRPs’. Conclusion PPI seemed to have a significant impact on RTCure, however, PRPs were less aware. A focus on improving communication between PRPs and researchers (facilitated by the PPI Coordinator), and providing PPI training for researchers is likely to improve involvement. Complex legal agreements for PRPs should be avoided and careful attention paid to appropriate PRP compensation.

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Section: Introductionmentioning

confidence: 99%

Patient and public involvement in an international rheumatology translational research project: an evaluation

Souza

Johansson²,

Karlfeldt³

et al. 2022

BMC Rheumatol

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“…Alongside this, there are opportunities for researchers to partner with hospitals to examine the experiences and outcomes of social media-based consumer engagement on service design and quality improvement projects. Research examining the outcomes of social media-based consumer engagement activities for hospitals, providers and consumers are particularly important to fill a gap in existing literature (Lloyd et al, 2021; Lowe et al, 2021; Walsh et al, 2021). Research which focuses on the experiences and outcomes of service design and quality improvement activities involving people from communities known to be under-represented in consumer engagement activities (Chauhan et al, 2021; Davis & Farmer, 2017; O'Neill et al, 2014; Ocloo & Matthews, 2016; Wallace et al, 2019) is also warranted.…”

Section: Discussionmentioning

confidence: 99%

Social Media For Consumer Engagement: Co-Creating Guidance for Hospitals, Service Providers and Consumers

Walsh

Hyett

Hewson³

et al. 2022

International Journal of Qualitative Methods

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There has been interest in using social media for consumer engagement in hospitals, particularly for service design and quality improvement, but services have identified a need for guidance. This article outlines the methods used to involve stakeholders in the development of a guide for the use of social media as a consumer engagement tool for Australian public hospitals, and describes the changes to the guide and implementation findings that resulted from stakeholder involvement. The development of the guide involved cycles of two interrelated methods – (1) small group co-creation involving three hospital consumer representatives, three service provider representatives and three academics gathering and analysing data, and integrating findings into the development of the guide; and (2) a consultation with eighteen hospital stakeholders who provided feedback on versions of the guide throughout its development. Participants were encouraged to use their experience as service providers and consumers to reflect broadly on how the content and design of the guide could support social media-based consumer engagement within their particular setting. The co-creation and consultation methods led to four main feedback themes: (1) Enhancing usability is critical for guidance resources; (2) Executive support and teamwork are essential for implementation; (3) Start small and build experience and knowledge over time; and (4) Thinking about new methods brings up questions around existing practice. Involving stakeholders in the design process through co-creation and consultation methods led to critical changes to the guide, enhancing its usability and creating a focus in the guide on building organisational and individual capacity around service design and improvement. Involving stakeholders in the development of the guide also allowed us to translate existing research knowledge into practical implementation strategies and tools, and may increase the likelihood of the guide being used by hospitals, providers and consumers.

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“…Detailed accounts of how public involvement is undertaken within research studies remain limited 20 and usually focus on specific involvement roles 18,21–24 . Descriptions of public involvement across the whole research cycle of a major research study are uncommon 25 . More evidence about the context, process and effects of public involvement in research is needed 21,26 .…”

Section: Introductionmentioning

confidence: 99%

“… 18 , 21 , 22 , 23 , 24 Descriptions of public involvement across the whole research cycle of a major research study are uncommon. 25 More evidence about the context, process and effects of public involvement in research is needed. 21 , 26 There are divergent views over the value of, and approaches to, assessing effects of public involvement, 27 , 28 , 29 including defining core features, activities and mechanisms 30 , 31 and encouraging feedback and mutual learning.…”

Section: Introductionmentioning

confidence: 99%

Implementing public involvement throughout the research process—Experience and learning from the GPs in EDs study

Evans

Carson‐Stevens

Cooper

et al. 2022

Health Expectations

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Background Public involvement in health services research is encouraged. Descriptions of public involvement across the whole research cycle of a major study are uncommon and its effects on research conduct are poorly understood. Aim This study aimed to describe how we implemented public involvement, reflect on process and effects in a large‐scale multi‐site research study and present learning for future involvement practice. Method We recorded public involvement roles and activities throughout the study and compared these to our original public involvement plan included in our project proposal. We held a group interview with study co‐applicants to explore their experiences, transcribed the recorded discussion and conducted thematic analysis. We synthesized the findings to develop recommendations for future practice. Results Public contributors' activities went beyond strategic study planning and management to include active involvement in data collection, analysis and dissemination. They attended management, scrutiny, planning and task meetings. They also facilitated public involvement through annual planning and review sessions, conducted a Public Involvement audit and coordinated public and patient input to stakeholder discussions at key study stages. Group interview respondents said that involvement exceeded their expectations. They identified effects such as changes to patient recruitment, terminology clarification and extra dissemination activities. They identified factors enabling effective involvement including team and leader commitment, named support contact, building relationships and demonstrating equality and public contributors being confident to challenge and flexible to meet researchers' timescales and work patterns. There were challenges matching resources to roles and questions about the risk of over‐professionalizing public contributors. Conclusion We extended our planned approach to public involvement and identified benefits to the research process that were both specific and general. We identified good practice to support effective public involvement in health services research that study teams should consider in planning and undertaking research. Public Contribution This paper was co‐conceived, co‐planned and co‐authored by public contributors to contribute research evidence, based on their experiences of active involvement in the design, implementation and dissemination of a major health services research study.

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Evaluating health service outcomes of public involvement in health service design in high-income countries: a systematic review

Cited by 19 publications

References 147 publications

Patient and public involvement in an international rheumatology translational research project: an evaluation

Patient and public involvement in an international rheumatology translational research project: an evaluation

Social Media For Consumer Engagement: Co-Creating Guidance for Hospitals, Service Providers and Consumers

Implementing public involvement throughout the research process—Experience and learning from the GPs in EDs study

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