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.

scholarly journals PATIENT AND PUBLIC INVOLVEMENT IN HEALTH AND SOCIAL CARE IN ENGLAND

2014 ◽  
Vol 8 (4) ◽  
pp. 39-41
Author(s):  
Jane Randall-Smith ◽  
Catherine Pritchard
Keyword(s):  
Public Involvement ◽  
Social Care ◽  
Care Service ◽  
Local Area ◽  
Patient And Public Involvement ◽  
Consumer Participation ◽  
Social Care Service ◽  
Care Services ◽  
Statutory Authority ◽  
Health And Social Care

Signifcant changes were brought about in health and social care in England in 2013, as a result of the Health and Social Care Act 2012. As part of the changes in 2013, a network of local Healthwatch organisations was set up to act as the people’s champion for health and social care in their local area. Healthwatch Shropshire is one of these local Healthwatch. It gathers experiences and opinions from patients, carers, service users and the wider public about publicly funded health and social care services and uses this information to infuence health and social care service delivery. Healthwatch Shropshire also recruits and trains volunteers to support its work, in particular, specially trained volunteers visit locations where health and social care services are provided and report on their fndings. Healthwatch Shropshire also has information and signposting services, provides volunteering opportunities, and has a statutory authority to visit locations where health and social care services are being delivered.Keywords: patient participation, consumer participation, public opinion

scholarly journals Patient and public involvement (PPI) in prisons: the involvement of people living in prison in the research process – a systematic scoping review

2021 ◽  
Vol 9 (1) ◽  
Author(s):  
Samantha Treacy ◽  
Steven Martin ◽  
Nelum Samarutilake ◽  
Tine Van Bortel
Keyword(s):  
Systematic Review ◽  
Scoping Review ◽  
Public Involvement ◽  
Social Care ◽  
Positive Impact ◽  
Research Process ◽  
Evidence Base ◽  
Patient And Public Involvement ◽  
Care Research ◽  
Health And Social Care

Abstract Background Patient and Public Involvement (PPI) in health and social care research is increasingly prevalent and is promoted in policy as a means of improving the validity of research. This also applies to people living in prison and using social care services. Whilst evidence for the effectiveness of PPI was limited and reviews of its application in prisons were not found, the infancy of the evidence base and moral and ethical reasons for involvement mean that PPI continues to be advocated in the community and in prisons. Objectives To conduct a review of the literature regarding the involvement of people or persons living in prison (PLiP) in health and social care research focused on: (i) aims; (ii) types of involvement; (iii) evaluations and findings; (iv) barriers and solutions; and (v) feasibility of undertaking a systematic review. Methods A systematic scoping review was undertaken following Arksey and O’Malley’s (International Journal of Social Research Methodology 8: 19-32, 2005) five-stage framework. A comprehensive search was conducted involving ten electronic databases up until December 2020 using patient involvement and context related search terms. A review-specific spreadsheet was created following the PICO formula, and a narrative synthesis approach was taken to answer the research questions. PRISMA guidelines were followed in reporting. Results 39 papers were selected for inclusion in the review. The majority of these took a ‘participatory’ approach to prisoner involvement, which occurred at most stages during the research process except for more ‘higher’ level research operations (funding applications and project management), and only one study was led by PLiPs. Few studies involved an evaluation of the involvement of PLiP, and this was mostly PLiP or researcher reflections without formal or independent analysis, and largely reported a positive impact. Barriers to the involvement of PLiP coalesced around power differences and prison bureaucracy. Conclusion Given the very high risk of bias arising from the available ‘evaluations’, it was not possible to derive firm conclusions about the effectiveness of PLiP involvement in the research process. In addition, given the state of the evidence base, it was felt that a systematic review would not be feasible until more evaluations were undertaken using a range of methodologies to develop the field further.

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 Critical perspectives on ‘consumer involvement’ in health research

2009 ◽  
Vol 46 (1) ◽  
pp. 63-82 ◽  
Author(s):  
Paul R. Ward ◽  
Jill Thompson ◽  
Rosemary Barber ◽  
Christopher J. Armitage ◽  
Jonathan D. Boote ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Health Research ◽  
Social Care ◽  
Good Practice ◽  
Research Process ◽  
Consumer Involvement ◽  
Health And Social Care ◽  
Potential Benefits ◽  
The Uk ◽  
Critical Perspectives

Researchers in the area of health and social care (both in Australia and internationally) are encouraged to involve consumers throughout the research process, often on ethical, political and methodological grounds, or simply as ‘good practice’. This article presents findings from a qualitative study in the UK of researchers’ experiences and views of consumer involvement in health research. Two main themes are presented. First, we explore the ‘know—do gap’ which relates to the tensions between researchers’ perceptions of the potential benefits of, and their actual practices in relation to, consumer involvement. Second, we focus on one of the reasons for this ‘know—do gap’, namely epistemological dissonance. Findings are linked to issues around consumerism in research, lay/professional knowledges, the (re)production of professional and consumer identities and the maintenance of boundaries between consumers and researchers.

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.

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.

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