The impact of community engagement on health and social outcomes: a systematic review

Milton, Beth; Attree, Pamela; French, Beverley; Povall, Sue; Whitehead, Margaret; Popay, Jennie

doi:10.1093/cdj/bsr043

Cited by 141 publications

(118 citation statements)

References 4 publications

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“…199 A systematic review 200 on the impact of community engagement on health and social outcomes found that community engagement helped with planning and management of housing services, enabled partnership working and better communication between stakeholders and provided a conduit to a broader community. Although there was evidence of impact on members of the public, such as development of skills, conclusive evidence of the impact of community engagement on service delivery could not be found.…”

Section: Impact Of Patient and Public Involvementmentioning

confidence: 99%

ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study

Wilson

Mathie

Keenan

et al. 2015

Health Serv Deliv Res

230

281

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BackgroundPatient and public involvement (PPI) is a prerequisite for many funding bodies and NHS research ethics approval. PPI in research is defined as research carried out with or by the public rather than to, about or for them. While the benefits of PPI have been widely discussed, there is a lack of evidence on the impact and outcomes of PPI in research.ObjectivesTo determine the types of PPI in funded research, describe key processes, analyse the contextual and temporal dynamics of PPI and explore the experience of PPI in research for all those involved. Mechanisms contributing to the routine incorporation of PPI in the research process were assessed, the impact of PPI on research processes and outcomes evaluated, and barriers and enablers to effective PPI identified.DesignA three-staged realist evaluation drawing on Normalisation Process Theory to understand how far PPI was embedded within health-care research in six areas: diabetes mellitus, arthritis, cystic fibrosis, dementia, public health and learning disabilities. The first two stages comprised a scoping exercise and online survey to chief investigators to assess current PPI activity. The third stage consisted of case studies tracked over 18 months through interviews and document analysis. The research was conducted in four regions of England.ParticipantsNon-commercial studies currently running or completed within the previous 2 years eligible for adoption on the UK Clinical Research Network portfolio. A total of 129 case study participants included researchers and PPI representatives from 22 research studies, and representatives from funding bodies and PPI networks.ResultsIn the scoping 51% (n = 92) of studies had evidence of PPI and in the survey 79% (n = 80), with funder requirements and study design the strongest influence on the extent of PPI. There was little transparency about PPI in publicly accessible information. In case studies, context–mechanism–outcome configurations suggested that six salient actions were required for effective PPI. These were a clear purpose, role and structure for PPI; ensuring diversity; whole research team engagement with PPI; mutual understanding and trust between the researchers and lay representatives; ensuring opportunities for PPI throughout the research process; and reflecting on, appraising and evaluating PPI within a research study. PPI models included a ‘one-off’ model with limited PPI, a fully intertwined model in which PPI was fully embedded and an outreach model with lay representatives linking to broader communities. Enabling contexts included funder, topic/design, resources, research host, organisation of PPI and, most importantly, relationships. In some case studies, lack of coherence in defining PPI persisted, with evidence of a dual role of PPI representative/study participant. Evidence of PPI outcomes included changes to study design, improvements to recruitment materials and rates, and dissemination.ConclusionsSix salient actions were required for effective PPI and were characterised by a shared understanding of moral and methodological purposes of PPI, a key individual co-ordinating PPI, ensuring diversity, a research team positive about PPI input and fully engaged with it, based on relationships that were established and maintained over time, and PPI being evaluated in a proactive and systematic approach. Future work recommendations include exploring the impact of virtual PPI, cost analysis and economic evaluation of the different models of PPI, and a longer-term follow-up study of the outcomes of PPI on research findings and impact on services and clinical practice.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

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Section: Impact Of Patient and Public Involvementmentioning

confidence: 99%

ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study

Wilson

Mathie

Keenan

et al. 2015

Health Serv Deliv Res

230

281

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“…These might include the improvement and sustaining of neighbourhoods, greater equity in access to care and support, and the inclusion of marginalised groups (Sherrieb et al, 2010;Boyle D, 2005). Among the consequences might be greater community safety, increased levels of citizen participation, improved physical and social environments, and increased levels of support that helps people to do their jobs and find employment (Milton et al, 2011;Bruce et al, 2011;Eversole, 2010;Buonanno, 2009). …”

Section: Introductionmentioning

confidence: 99%

Building community capital in social care: is there an economic case?

Knapp

Bauer

Perkins

et al. 2012

Community Development Journal

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This document is the author's submitted version of the journal article, before the peer review process. There may be differences between this version and the published version. You are advised to consult the publisher's version if you wish to cite from it. For more research by LSE authors go to LSE Research Online ABSTRACTCurrent debates in many countries about the sustainability of public commitments include discussion of the adequacy and affordability of collective health and social care responses to the rapidly growing needs of ageing communities. A recurrent theme in England is whether communities can play greater roles in preventing the emergence of social care needs and/or in helping to meet them. A number of approaches have been suggested, employing a range of concepts and terms, including community development, community capacity-building and creating social capital. We investigated whether initiatives of this kind generate cost-savings to the public purse and more broadly to society. We used a cost-benefit approach and decisionmodelling techniques to demonstrate potential costs and economic consequences in a context where evidence is limited and there is little opportunity to collect primary data. We found that there could be sizable savings to the public purse when investing in community capital-building initiatives at relatively low cost. We discuss the limitations of our analysis and recommend collection of better outcome data.

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“…While in reality many of the services discussed by participants sat closer to the "informing and initial consultation" level on the Milton et al (2012) hierarchy of engagement, participants strongly expressed their desire for services to move towards engagement that reflected community decision making and full control. This is not a new assertion, with an existing evidence base demonstrating that this level of engagement is necessary for services to achieve their desired broadly scoped wellbeing outcomes.…”

Section: Discussionmentioning

confidence: 99%

“…Yet, from a service provider or governmental perspective, community engagement is usually understood as sitting along a hierarchy of levels from informing and initial consultation to community decision making and full control (Milton et al, 2012). While the successful programs outlined above sit high on this hierarchy, many (or most) interventions in remote Aboriginal Australia continue to operate much further down this ladder.…”

Section: Literature Reviewmentioning

confidence: 99%

Untitled

2018

IIPJ

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Access to effective services and programs is necessary to improve wellbeing for Aboriginal and Torres Strait Islander people living in remote Australia. Without genuine participation of Aboriginal community members in the design, governance, and delivery of services, desired service delivery outcomes are rarely achieved. Using a "shared space" model, Aboriginal communities, governments, and scientists came together to design and develop the Interplay Wellbeing Framework. This Framework brings together stories and numbers (or qualitative and quantitative data) to represent community values for the purpose of informing program and policy agendas. This article unpacks what community members saw as making a service work well and why. The domains of empowerment and community functioning are discussed and their relationship to effective service delivery demonstrated.

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The impact of community engagement on health and social outcomes: a systematic review

Cited by 141 publications

References 4 publications

ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study

ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study

Building community capital in social care: is there an economic case?

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