scholarly journals Public involvement in research: assessing impact through a realist evaluation

2014 ◽  
Vol 2 (36) ◽  
pp. 1-128 ◽  
Author(s):  
David Evans ◽  
Jane Coad ◽  
Kiera Cottrell ◽  
Jane Dalrymple ◽  
Rosemary Davies ◽  
...  
Keyword(s):  
Case Studies ◽  
Research Design ◽  
Health Research ◽  
Public Involvement ◽  
Social Care ◽  
Realist Evaluation ◽  
Research Projects ◽  
The Public ◽  
Health And Social Care ◽  
The Impact

BackgroundThis study was concerned with developing the evidence base for public involvement in research in health and social care. There now is significant support for public involvement within the National Institute for Health Research, and researchers applying for National Institute for Health Research grants are expected to involve the public. Despite this policy commitment, evidence for the benefits of public involvement in research remains limited. This study addressed this need through a realist evaluation.Aim and objectivesThe aim was to identify the contextual factors and mechanisms that are regularly associated with effective public involvement in research. The objectives included identifying a sample of eight research projects and their desired outcomes of public involvement, tracking the impact of public involvement in these case studies, and comparing the associated contextual factors and mechanisms.DesignThe research design was based on the application of realist theory of evaluation, which argues that social programmes are driven by an underlying vision of change – a ‘programme theory’ of how the intervention is supposed to work. The role of the evaluator is to compare theory and practice. Impact can be understood by identifying regularities of context, mechanism and outcome. Thus the key question for the evaluator is ‘What works for whom in what circumstances . . . and why?’ (Pawson R.The Science of Evaluation. London: Sage; 2013). We therefore planned a realist evaluation based on qualitative case studies of public involvement in research.Setting and participantsEight diverse case studies of research projects in health and social care took place over the calendar year 2012 with 88 interviews from 42 participants across the eight studies: researchers, research managers, third-sector partners and research partners (members of the public involved in research).ResultsCase study data supported the importance of some aspects of our theory of public involvement in research and led us to amend other elements. Public involvement was associated with improvements in research design and delivery, particularly recruitment strategies and materials, and data collection tools. This study identified the previously unrecognised importance of principal investigator leadership as a key contextual factor leading to the impact of public involvement; alternatively, public involvement might still be effective without principal investigator leadership where there is a wider culture of involvement. In terms of the mechanisms of involvement, allocating staff time to facilitate involvement appeared more important than formal budgeting. Another important new finding was that many research proposals significantly undercosted public involvement. Nurturing good interpersonal relationships was crucial to effective involvement. Payment for research partner time and formal training appeared more significant for some types of public involvement than others. Feedback to research partners on the value of their contribution was important in maintaining motivation and confidence.ConclusionsA revised theory of public involvement in research was developed and tested, which identifies key regularities of context, mechanism and outcome in how public involvement in research works. Implications for future research include the need to further explore how leadership on public involvement might be facilitated, methodological work on assessing impact and the development of economic analysis of involvement.Funding detailsThe National Institute for Health Research Health Service and Delivery programme.

Accountability and governance in social care: the impact of personalisation

2014 ◽  
Vol 11 (2) ◽  
pp. 111-128 ◽  
Author(s):  
Enrico Bracci
Keyword(s):  
Case Studies ◽  
Social Services ◽  
Social Care ◽  
Public Governance ◽  
Content Type ◽  
The Public ◽  
New Public ◽  
Governance Process ◽  
The Impact ◽  
The Relationship

Purpose – The aim of the paper is to illustrate the changing structure of accountability under a new public governance agenda introduced in England to deliver social care through personal budgets. Design/methodology/approach – The paper draws on accountability and public governance literature, in particular, the accountability framework proposed by Hupe and Hill. The evidence was gathered from exploratory case studies conducted in two English County Councils. Findings – The introduction of personal budgets has modified the roles of the different actors involved in the co-production of social services. The case studies evidence changes in the accountability and governance process, particularly with respect to the personal budget regime that has devolved responsibility and accountability to the customer. Specifically, the customer's role has shifted and expanded in the accountability chain and thus developed into a partnership. Originality/value – This study is one of the first to analyse the relationship between the personalisation agenda in English social services and the relevant accountability mechanisms involved. Moreover, the paper refines the theoretical framework proposed by Hupe and Hill according to the different role the public now plays.

scholarly journals Mapping the impact of patient and public involvement on health and social care research: a systematic review

2012 ◽  
Vol 17 (5) ◽  
pp. 637-650 ◽  
Author(s):  
Jo Brett ◽  
Sophie Staniszewska ◽  
Carole Mockford ◽  
Sandra Herron-Marx ◽  
John Hughes ◽  
...  
Keyword(s):  
Systematic Review ◽  
Public Involvement ◽  
Social Care ◽  
Patient And Public Involvement ◽  
Care Research ◽  
Health And Social Care ◽  
The Impact

scholarly journals A design-led framework for engaged research: Using a design approach to understand and place the public at the core of health and social care

2021 ◽  
Vol 69 (3) ◽  
pp. 1-18
Author(s):  
Mary Galvin ◽  
Avril Kennan ◽  
Éidín Ní Shé
Keyword(s):  
Health Research ◽  
Social Care ◽  
Social Research ◽  
Research Process ◽  
The Public ◽  
Umbrella Organisation ◽  
Health And Social Care ◽  
Academic Partner ◽  
New Policies

Abstract This paper offers a multi-perspective approach on the role of engaged research in health and social care. Each of the authors focuses on their individual experiences of this domain, from the perspective of an academic partner of the Health Research Board’s PPI Ignite programme, a CEO of an umbrella organisation for health research charities and a researcher in design innovation, focusing on health research. The paper outlines the values which underpin public and patient involvement, as well as examples of its application as engaged research. It details how organisations like Health Research Charities Ireland support and enable engaged research within health and social research and policy. This paper offers a framework for facilitating dialogue and response across all stakeholders in the engaged research process, illustrating the importance of engaged research and how we can further our understanding and application of it within health and social care policy by adopting a design-led approach. We argue that a design-led approach can both facilitate engaged research as well as support policymakers in the design of new policies and practices.

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

2015 ◽  
Vol 3 (38) ◽  
pp. 1-176 ◽  
Author(s):  
Patricia Wilson ◽  
Elspeth Mathie ◽  
Julia Keenan ◽  
Elaine McNeilly ◽  
Claire Goodman ◽  
...  
Keyword(s):  
Case Studies ◽  
Study Design ◽  
Research Team ◽  
Public Involvement ◽  
Research Process ◽  
Patient And Public Involvement ◽  
Realist Evaluation ◽  
Research Network ◽  
Normalisation Process Theory ◽  
The Impact

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.

Blowin’ in the wind: The involvement of people who use services, carers and the public in health and social care

2016 ◽  
Author(s):  
Karen Newbigging
Keyword(s):  
Public Involvement ◽  
Social Care ◽  
Patient And Public Involvement ◽  
Democratic Deficit ◽  
The Public ◽  
Health And Social Care ◽  
Rapid Diversification

Patient and public involvement (PPI) is often framed in terms of addressing the democratic deficit in the NHS but in England, since 2000, it has become increasingly aligned with the reform of the NHS to become patient centred by enabling people to exercise choice as a right and responsibility across all aspects of healthcare. Since then, there has been a rapid diversification of approaches to and methods for PPI, which experienced organisational turbulence under the Labour administration. This chapter discusses the evolution of PPI in England before 2010, and it examines the Coalition’s reforms of PPI, and the implications of these reforms.

scholarly journals Public involvement in research about environmental change and health: A case study

2019 ◽  
Vol 23 (2) ◽  
pp. 215-233 ◽  
Author(s):  
Kath Maguire ◽  
Ruth Garside ◽  
Jo Poland ◽  
Lora E Fleming ◽  
Ian Alcock ◽  
...  
Keyword(s):  
Environmental Change ◽  
Public Engagement ◽  
Health Research ◽  
Public Involvement ◽  
Research Projects ◽  
Short Term ◽  
Policy Makers ◽  
Research Issues ◽  
The Public

Involving and engaging the public are crucial for effective prioritisation, dissemination and implementation of research about the complex interactions between environments and health. Involvement is also important to funders and policy makers who often see it as vital for building trust and justifying the investment of public money. In public health research, ‘the public’ can seem an amorphous target for researchers to engage with, and the short-term nature of research projects can be a challenge. Technocratic and pedagogical approaches have frequently met with resistance, so public involvement needs to be seen in the context of a history which includes contested truths, power inequalities and political activism. It is therefore vital for researchers and policy makers, as well as public contributors, to share best practice and to explore the challenges encountered in public involvement and engagement. This article presents a theoretically informed case study of the contributions made by the Health and Environment Public Engagement Group to the work of the National Institute for Health Research (NIHR) Health Protection Research Unit in Environmental Change and Health (HPRU-ECH). We describe how Health and Environment Public Engagement Group has provided researchers in the HPRU-ECH with a vehicle to support access to public views on multiple aspects of the research work across three workshops, discussion of ongoing research issues at meetings and supporting dissemination to local government partners, as well as public representation on the HPRU-ECH Advisory Board. We conclude that institutional support for standing public involvement groups can provide conduits for connecting public with policy makers and academic institutions. This can enable public involvement and engagement, which would be difficult, if not impossible, to achieve in individual short-term and unconnected research projects.

scholarly journals Reporting on patient and public involvement (PPI) in research publications: using the GRIPP2 checklists with lay co-researchers

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Julia Jones ◽  
Marion Cowe ◽  
Sue Marks ◽  
Tony McAllister ◽  
Alex Mendoza ◽  
...  
Keyword(s):  
Health Research ◽  
Public Involvement ◽  
Short Form ◽  
Collaborative Study ◽  
Research Process ◽  
Patient And Public Involvement ◽  
Missed Opportunities ◽  
The Public ◽  
Research Publications ◽  
Health And Social Care

Abstract Background Patient and public involvement (PPI) in health and social care research is considered important internationally, with increasing evidence that PPI improves the quality, relevance and outcomes of research. There has been a growth in research publications that describe PPI in the research process, but the frequency and detail of PPI reporting varies considerably. This paper reports on a collaborative study that aimed to describe the extent of PPI in publications from research funded by the Collaboration for Leadership in Applied Health Research and Care (CLAHRC) in the East of England (EoE), part of the National Institute of Health Research (NIHR) in England (2014–2019). Methods A descriptive study of all research publications (1st January 2014 to 31st October 2017) funded by the NIHR CLAHRC EoE. Members of the Public Involvement in Research group (PIRg), at the University of Hertfordshire, were actively involved, with four PIRg co-researchers. We used an internationally recognised reporting checklist for PPI called the GRIPP2 (Guidance for Reporting Involvement of Patients and the Public, Version 2) to guide the reviewing process. Results Out of 148 research papers identified, 16 (14%) reported some aspect of PPI activity and were included for review. Ten of the publications (63%) acknowledged the contributions of PPI individuals and/or groups and five had PPI co-authors. There was considerable variation in the PPI reported in the publications, with some ‘missed opportunities’ to provide detail of PPI undertaken. The perspectives of the co-researchers shaped the reporting of the results from this study. The co-researchers found the GRIPP2-SF (short form) to be useful, but the GRIPP2-LF (long form) was considered over complicated and not user-friendly. Conclusions This is one of the first studies to involve lay co-researchers in the review of PPI reporting using the GRIPP2 reporting checklists (GRIPP2-SF and GRIPP2-LF). We make recommendations for a revised version of the GRIPP2-SF, with clearer instructions and three additional sections to record whether PPI is reported in the abstract or key words, in the acknowledgements section, and whether there are PPI co-authors. We also recommend the provision of training and support for patient and public peer reviewers.

scholarly journals Involving public and patients in research

2014 ◽  
Vol 96 (5) ◽  
pp. 148-149 ◽  
Author(s):  
V Kasivisvanathan ◽  
Kate Williams
Keyword(s):  
Health Research ◽  
Public Involvement ◽  
Social Care ◽  
Research Process ◽  
Patient And Public Involvement ◽  
Care Services ◽  
Health And Social Care

What does patient and public involvement (PPI) in research mean? The National Institute for Health Research (NIHR) defines ‘patient and public’ as patients, potential patients, their carers, people who use health and social care services, and organisations that represent people who use these services. 1 The term ‘involvement’ refers to an active partnership between patients and public and researchers in the research process.

The impact of the Health and Social Care Act, 2012 on the health and wellbeing of rough sleepers

2016 ◽  
Vol 24 (5/6) ◽  
pp. 249-259 ◽  
Author(s):  
James Sebastian Fuller
Keyword(s):  
Service User ◽  
Public Involvement ◽  
Social Care ◽  
Service Providers ◽  
Patient Choice ◽  
Front Line ◽  
Support Worker ◽  
Content Type ◽  
Health And Social Care ◽  
The Impact

Purpose The purpose of this paper is to explore the impact of the Health and Social Care Act, 2012 on London’s rough sleepers as seen from the perspective of one former homeless service user (currently working as a support worker in a day centre providing outreach and “drop in” facilities for people who are street homeless and other vulnerable adults including female sex workers). The discussion centres on some of the unintended impacts of changes to healthcare commissioning; the new arrangements for patient, public representation; and the enhanced role of local councils. Design/methodology/approach This paper is grounded in front line practitioner reflection/opinion and draws on practical experience and observation at Spires, as well as research and government papers published by other service providers. The aspirations of the Health and Social Care Act, 2012 are set out before its practical application are examined from the rough sleeper’s dimension. Findings Putting clinicians and GPs centre stage in the commissioning and purchasing of healthcare may have some benefits for individual patient choice, but it can also dilute patient public involvement in health and social care with negative effects for vulnerable and excluded groups, including rough sleepers. The terms of reference ascribed to Local Healthwatch Organisations, the official representatives of the people, are narrower than previously and limit their ability to influence official policy. The Act centralises control whilst devolving operational responsibility, especially for public health provision on which rough sleepers often rely. It is suggested that local voluntary organisations and specialist “inclusion” health groups are increasingly being expected to take over responsibility for delivering health and social care and that mainstream collaboration is much reduced rather than enhanced by this fragmentation. Research limitations/implications This review is based on the opinion of an “expert by experience” which may not be representative. Originality/value This is one of few papers which present a front line service user/practitioner perspective on the impact of clinical commissioning on services for marginalised groups.

The Role of Interprofessional Learning in Developing Transformative Health & Social Work Professionals

2019 ◽  
Vol 16 (1-2) ◽  
pp. 96-109
Author(s):  
Ruth Mary Strudwick ◽  
Jane Marie Harvey-Lloyd ◽  
Hollie C Hadwen
Keyword(s):  
Case Studies ◽  
Service User ◽  
Social Care ◽  
Professional Roles ◽  
Service Users ◽  
Interprofessional Learning ◽  
Interprofessional Team ◽  
Feedback Questionnaire ◽  
Health And Social Care ◽  
The Impact

Interprofessional learning (IPL) is an integral part of all health and social care undergraduate education programmes at our university.  It is widely considered that IPL encourages health and social care students to learn from and about one another and that this process underpins a better understanding not only of their own professional roles but also those of others.  This in turn promotes more effective teamwork, enhances integrated service user pathways and therefore provides improved care for service users.  IPL is transformative as it enables students to consider their role in the interprofessional team rather than focussing on themselves (Schmitt et al., 2011). The purpose of this paper is to discuss the experience of delivering IPL at our university by using examples from our modules in order to highlight and debate the importance of IPL in preparing health and social care students for their professional roles.  The article will describe two IPL modules where students work in interprofessional groups exploring and discussing practice-based case studies.  All of the staff and students involved completed a feedback questionnaire which evaluated their experiences of undertaking the case study exercise.  The impact of these experiences will be discussed in terms of professional development for the students involved and the impact that these learning experiences have on their future roles.  We will argue that these IPL experiences allow students to develop their own professional roles and identity, understand the roles of others and are enabled to provide more holistic care for service users. We believe that working together in interprofessional groups to look at practice-based service user case studies is transformative in that it enables the students to learn from and about other professionals, it equips them with knowledge about one another’s roles and enables them to work together more effectively with other members of the interprofessional team (CAIPE, 2008).  This in turn enables the students to work together for the good of their service users and thereby becoming more compassionate and person-centred professionals.

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