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

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.

2009 ◽  
Vol 46 (1) ◽  
pp. 63-82 ◽  
Author(s):  
Paul R. Ward ◽  
Jill Thompson ◽  
Rosemary Barber ◽  
Christopher J. Armitage ◽  
Jonathan D. Boote ◽  
...  

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.


2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Julia Jones ◽  
Marion Cowe ◽  
Sue Marks ◽  
Tony McAllister ◽  
Alex Mendoza ◽  
...  

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.


2014 ◽  
Vol 96 (5) ◽  
pp. 148-149 ◽  
Author(s):  
V Kasivisvanathan ◽  
Kate Williams

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.


2014 ◽  
Vol 2 (36) ◽  
pp. 1-128 ◽  
Author(s):  
David Evans ◽  
Jane Coad ◽  
Kiera Cottrell ◽  
Jane Dalrymple ◽  
Rosemary Davies ◽  
...  

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.


2020 ◽  
Author(s):  
Jordan Taylor ◽  
Paula Gleeson ◽  
Tania Teague ◽  
Michelle DiGiacomo

The role of unpaid and informal care is a crucial part of the health and social care system in Australia and internationally. As carers in Australia have received statutory recognition, concerted efforts to foster engagement in carer participation in work and education has followed. However, little is known about the strategies and policies that higher education institutions have implemented to support the inclusion of carers. This study has three components: first, it employs a review of evidence for interventions to support to support carers; second, it reviews existing higher education institutions’ policies to gauge the extent of inclusive support made available to student carers, and; third it conducts interviews with staff from five higher education institutions with concerted carer policies in Australia were held to discuss their institutions’ policies, and experiences as practitioners of carer inclusion and support. Results indicate difficulty in identifying carers to offer support services, the relatively recent measures taken to accommodate carers in higher education, extending similar measures which are in place for students with a disability, and difficulties accommodating flexibility in rigid institutional settings. A synthesis of these findings were used to produce a framework of strategies, policies and procedures of inclusion to support carers in higher education.


2016 ◽  
Vol 22 (4) ◽  
pp. 263-268 ◽  
Author(s):  
Jennifer Perry ◽  
Fiona L. Mason

SummaryThe health and social care landscape in the UK is changing, and there is now, more than ever, a real need for doctors to embrace leadership and management. Evidence shows that medical leadership is associated with better outcomes for patients. Psychiatrists are particularly well suited to such roles, given the interpersonal skills and self-awareness that they develop in their training. In this article, we examine the role of the psychiatrist in leading at a patient, team and organisational level and the impact this has. We also discuss different leadership and management styles.


2014 ◽  
Vol 38 (1) ◽  
pp. 19-23 ◽  
Author(s):  
Alex J. Mitchell ◽  
John Gill

Aims and methodTo examine research productivity of staff working across 57 National Health Service (NHS) mental health trusts in England. We examined research productivity between 2010 and 2012, including funded portfolio studies and all research (funded and unfunded).ResultsAcross 57 trusts there were 1297 National Institute for Health Research (NIHR) studies in 2011/2012, involving 46140 participants and in the same year staff in these trusts published 1334 articles (an average of only 23.4 per trust per annum). After correcting for trust size and budget, the South London and Maudsley NHS Foundation Trust was the most productive. In terms of funded portfolio studies, Manchester Mental Health and Social Care Trust as well as South London and Maudsley NHS Foundation Trust, Oxford Health NHS Foundation Trust and Cambridgeshire and Peterborough NHS Foundation Trust had the strongest performance in 2011/2012.Clinical implicationsTrusts should aim to capitalise on valuable staff resources and expertise and better support and encourage research in the NHS to help improve clinical services.


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