Reviewing progress in public involvement in NIHR research: developing and implementing a new vision for the future

ObjectivesTo review the progress of public involvement (PPI) in NIHR (National Institute for Health Research) research, identify barriers and enablers, reflect on the influence of PPI on the wider health research system in the UK and internationally and develop a vision for public involvement in research for 2025. The developing evidence base, growing institutional commitment and public involvement activity highlight its growth as a significant international social movement.DesignThe ‘Breaking Boundaries Review’ was commissioned by the Department of Health. An expert advisory panel was convened. Data sources included: an online survey, international evidence sessions, workshop events, open submission of documents and supporting materials and existing systematic reviews. Thematic analysis identified key themes. NVivo was used for data management. The themes informed the report’s vision, mission and recommendations, published as ‘Going the Extra Mile—Improving the health and the wealth of the nation through public involvement in research’. The Review is now being implemented across the NIHR.ResultsThis paper reports the Review findings, the first of its type internationally. A range of barriers and enablers to progress were identified, including attitudes, resources, infrastructure, training and support and leadership. The importance of evidence to underpin practice and continuous improvement emerged. Co-production was identified as a concept central to strengthening public involvement in the future. The Vision and Mission are supported by four suggested measures of success, reach, refinement, relevance and relationships.ConclusionsThe NIHR is the first funder of its size and importance globally to review its approach to public involvement. While significant progress has been made, there is a need to consolidate progress and accelerate the spread of effective practice, drawing on evidence. The outcomes of the Review are being implemented across the NIHR. The findings and recommendations have transferability for other organisations, countries and individuals.

Download Full-text

Assessing the possibilities and challenges of patient involvement in sexual, reproductive and HIV/AIDS services

Sexual Health ◽

10.1071/sh15224 ◽

2016 ◽

Vol 13 (3) ◽

pp. 213 ◽

Cited By ~ 3

Author(s):

Jane Meyrick ◽

Debra Gray ◽

Abigail Jones

Keyword(s):

Health Services ◽

Sexual Health ◽

Online Survey ◽

Public Involvement ◽

Service Providers ◽

Healthcare Services ◽

Evidence Base ◽

Patient And Public Involvement ◽

Convenience Sample ◽

The Uk

Background: Patient and public involvement (PPI) is a key feature of healthcare services in the UK. Sexual and reproductive health and HIV (SRHH) services face unique PPI challenges, as the anonymity and confidentiality required by service users can be a barrier to attracting patient input. PPI could improve sexual health services, through increased trust in services and the ability to tackle sexual health inequalities. However, specific practical guidance on how to address PPI in sexual health and the evidence to support it is sparse. Methods: This research aims to begin building an evidence base for PPI in sexual health services through: 1) an audit of PPI in SRHH in the Bristol region; and 2) a parallel survey of potential users of sexual health services about their experiences of PPI. For the audit, 18 SRHH organisations from all those in the region invited complete a short online survey, representing a range of different service providers. For the survey, participants, through a convenience sample via the University of the West of England and social media, were invited to complete an anonymous online survey of their experiences of PPI in SSRHs; 96 people responded. Results: Reliance on customer satisfaction approaches and patients not being asked for feedback or what PP is for are reported. Services cite under-resourcing and a lack of time as barriers. Conclusions: Improving the use of patient’s voice in SRHH could be supported through clarity of purpose (measured against outcomes), better communication with patients, and the need for flexible methods.

Download Full-text

Exploring corporate engagement with carbon management techniques

Emerald Open Research ◽

10.35241/emeraldopenres.14024.1 ◽

2021 ◽

Vol 3 ◽

pp. 9

Author(s):

Katherine Piper ◽

James Longhurst

Keyword(s):

Online Survey ◽

Evidence Base ◽

Annual Review ◽

Carbon Management ◽

Carbon Neutrality ◽

Sequential Mixed Methods ◽

Management Hierarchy ◽

Management Techniques ◽

Sustainability Initiatives ◽

The Uk

This paper explores the different ways of managing carbon in organisational settings. It uses a sequential mixed methods approach – literature review, discussions with sustainability thought leaders, and online survey and interviews with company sustainability leaders – to consider and critique the use of the carbon management hierarchy (CMH) by selected corporate bodies in the UK. The derived empirical evidence base enables a triangulated view of current performance and potential improvements. Currently, carbon management models are flawed, being vague in relation to the operational reductions required prior to offsetting and making no mention of Science Based Targets nor the role corporations could play in wider sustainability initiatives. An amended CMH is proposed incorporating wider sustainability initiatives, varying forms of offsets, the inclusion of accounting frameworks and an annual review mechanism to ensure progress towards carbon neutrality. If such a model were to be widely used, it would provide more rapid carbon emissions reductions and mitigation efforts, greater certainty in the authenticity of carbon offsets, wider sustainability impacts and a faster trajectory towards carbon neutrality.

Download Full-text

The future of health research in the UK

The Lancet ◽

10.1016/s0140-6736(06)69275-1 ◽

2006 ◽

Vol 368 (9537) ◽

pp. 727-728 ◽

Cited By ~ 2

Author(s):

Jon Nicholl

Keyword(s):

Health Research ◽

The Future ◽

The Uk

Download Full-text

Working in partnership with communities to improve health and research outcomes. Comparisons and commonalities between the UK and South Africa

Primary Health Care Research & Development ◽

10.1017/s1463423619000677 ◽

2019 ◽

Vol 20 ◽

Author(s):

Patricia Wilson ◽

Azwihangwisi Helen Mavhandu-Mudzusi

Keyword(s):

South Africa ◽

Health Care ◽

Community Participation ◽

South African ◽

Health Research ◽

Teenage Pregnancy ◽

Public Involvement ◽

Working Together ◽

The Uk ◽

Evaluation And Monitoring

Abstract Community and public participation and involvement is an underpinning principle of primary health care, an essential component of a social justice-orientated approach to health care and a vehicle to improving health outcomes for patients, public and communities. However, influenced by history and context, there are intrinsic issues surrounding power imbalance and other barriers to partnerships between communities, public, policy makers and researchers. It is important to acknowledge these issues, and through doing so share experiences and learn from those working within very different settings. In South Africa, community participation is seen as a route to decolonisation. It is also integral to the core functions of South African Higher Education Institutes, alongside teaching and research. In the UK, there has also been a history of participation and involvement as part of a social rights movement, but notably public involvement has become embedded in publicly funded health research as a policy imperative. In this paper, we draw on our respective programmes of work in public and community participation and involvement. These include a South African community engagement project to reduce teenage pregnancy and HIV infection working through a partnership between teachers, students and university academics, and a national evaluation in England of public involvement in applied health research. We begin by highlighting the lack of clarity and terms used interchangeably to describe participation, engagement and involvement. Frameworks for partnership working with relevance to South Africa and the UK are then analysed, suggesting key themes of relationships, working together, and evaluation and monitoring. The South African project and examples of public involvement in English primary and community care research are examined through these themes. We conclude the paper by mapping out common enablers and barriers to partnership working within these very different contexts.

Download Full-text

The future of health research in the UK

The Lancet ◽

10.1016/s0140-6736(06)69278-7 ◽

2006 ◽

Vol 368 (9537) ◽

pp. 729-730

Author(s):

Richard Himsworth

Keyword(s):

Health Research ◽

The Future ◽

The Uk

Download Full-text

The future of health research in the UK

The Lancet ◽

10.1016/s0140-6736(06)69273-8 ◽

2006 ◽

Vol 368 (9537) ◽

pp. 727

Author(s):

T Walley ◽

J Raftery

Keyword(s):

Health Research ◽

The Future ◽

The Uk

Download Full-text

Student Sex Work In The UK: Facts & Figures

Klinička psihologija ◽

10.21465/2016-kp-op-0085 ◽

2016 ◽

Vol 9 (1) ◽

pp. 119-119

Author(s):

S. Geuens ◽

◽

T. Sagar ◽

D. Jones ◽

◽

...

Keyword(s):

Sex Work ◽

Online Survey ◽

Evidence Base ◽

Male Students ◽

Sex Industry ◽

Policy And Practice ◽

College Of Law ◽

Ethical Approval ◽

Set Up ◽

The Uk

Objective: The Student Sex Work Project was set up at Swansea University (Wales) to locate students involved in the sex industry, discover their motivations and needs, and provide an evidence base for the development of policy and practice with regard to the phenomenon. Design and Method: Data was gathered through an online survey. A crosssectional design was employed. Participation was not randomized. The recruitment of respondents focused on Wales, later extending to the UK. Respondents were recruited through different channels e.g. the NUSE database, strategic campaign, etc. to a total of 6,773 respondents. Ethical approval was granted by the College of Law Research Ethics board at Swansea University. Results: Student involvement in the sex industry in the UK is a fact, both for female and male students. The prevalence of students considering to take up seks work is even larger. Student’s motivations for going into sex work range from financial to pleasure oriented. Conclusions: The student sex work project offers the empirical foundation needed in the ongoing political and academic debates on the phenomenon of student sex work. Data provided by the student sex work project debunks several cultural myths about who we imagine to be the ‘average’ student sex worker.

Download Full-text

Revised standards of proficiencies for midwives: an opportunity to influence childhood health?

British Journal of Midwifery ◽

10.12968/bjom.2020.28.3.150 ◽

2020 ◽

Vol 28 (3) ◽

pp. 150-154

Author(s):

Samantha Meegan

Keyword(s):

Public Health ◽

Child Development ◽

Evidence Base ◽

Early Child Development ◽

Childhood Health ◽

Early Child ◽

The Public ◽

The Future ◽

The Uk ◽

The Impact

The first 1 000 days of life are critical during early child development, yet the significance of this time and the impact on childhood health have only recently been recognised within the UK. In early 2020, the Nursing and Midwifery Council (NMC) released revised standards of proficiency for midwives. These draw on the evidence-base generated by recent research developments within public health, providing the first update of midwifery standards for a decade. This article critically explores the main aspects within the NMC's future midwife proficiencies that relate to the public health component of the midwifery role, and will examine how these factors can equip midwives of the future to support women, their babies and families within the fundamental early days of life.

Download Full-text

Third sector partnerships for older people: insights from live at home schemes in the UK

Working with Older People ◽

10.1108/wwop-03-2018-0008 ◽

2018 ◽

Vol 22 (3) ◽

pp. 148-153 ◽

Cited By ~ 1

Author(s):

Olumide Adisa

Keyword(s):

Older People ◽

Online Survey ◽

Third Sector ◽

Later Life ◽

Evidence Base ◽

Content Type ◽

Health And Social Care ◽

Wide Range ◽

The Uk ◽

At Home

Purpose While there is a rich literature on the role of partnerships between statutory agencies and third sector organisations for public service delivery in health and social care, the evidence base on, partnerships between community-based groups and charities for older people in the UK is lacking. Drawing on quantitative and qualitative data, the purpose of this paper is to examines partnerships within 46 live at home (LAH) schemes. These schemes were specifically designed to tackle isolation and promote independence and wellbeing by providing a wide range of activities, based on the needs of its members. Design/methodology/approach This study is based on an online survey of 46 LAH schemes and face-to-face interviews with seven scheme managers to capture data on the various partnership initiatives within the LAH schemes. Findings Third sector partnerships for older people varied by type – formal, semi-formal and informal. In addition, third sector partnership working fosters the achievement of clear outcomes for older people who LAH and could be a mechanism for building social capital in communities. The study also identified barriers to developing third sector partnerships within this context. Mapping existing partnerships in LAH schemes were considered to be useful in engaging with partners. LAH scheme managers were better able to identify partnerships that could be deepened and broadened, depending on the desired outcomes. Originality/value To the author’s knowledge, there are few studies on third sector partnership working in LAH schemes for older people. According to Age UK, there are 1.2m chronically lonely older people in the UK. Over half of all people aged 75 and over live alone (ONS, 2015). Loneliness and social isolation in later life are considered to be two of the largest health concerns we face. Scaling up these third sector partnerships may offer a credible way to shore up support for older people who live alone or want to live at home.

Download Full-text

Green dementia care in accommodation and care settings: a literature review

Housing Care and Support ◽

10.1108/hcs-04-2019-0010 ◽

2019 ◽

Vol 22 (4) ◽

pp. 193-206

Author(s):

Julie Barrett ◽

Simon Evans ◽

Neil Mapes

Keyword(s):

Pilot Study ◽

Literature Review ◽

Evidence Base ◽

Dementia Care ◽

Care Homes ◽

Content Type ◽

Health And Wellbeing ◽

Barriers And Enablers ◽

The Uk ◽

Extra Care Housing

Purpose The purpose of this paper is to examine the recent evidence relating to green (nature-based) dementia care for people living with dementia in long-term accommodation and care settings (housing for older people that provides both accommodation and care, such as residential care homes, nursing homes and extra care housing schemes). The review formed part of a pilot study exploring interaction with nature for people living with dementia in care homes and extra care housing schemes in the UK. Rather than a comprehensive systematic or critical literature review, the intention was to increase understanding of green dementia care to support the pilot study. Design/methodology/approach The review draws together the published and grey literature on the impacts of green (nature-based) dementia care, the barriers and enablers and good practice in provision. People living with dementia in accommodation and care settings are the focus of this review, due to the research study of which the review is part. Evidence relating to the impacts of engaging with nature on people in general, older people and residents in accommodation and care is also briefly examined as it has a bearing on people living with dementia. Findings Although interaction with the natural environment may not guarantee sustained wellbeing for all people living with dementia, there is some compelling evidence for a number of health and wellbeing benefits for many. However, there is a clear need for more large-scale rigorous research in this area, particularly with reference to health and wellbeing outcomes for people living with dementia in accommodation and care settings for which the evidence is limited. There is a stronger evidence base on barriers and enablers to accessing nature for people living with dementia in such settings. Research limitations/implications The literature review was conducted to support a pilot study exploring green (nature-based) dementia care in care homes and extra care housing schemes in the UK. Consequently, the focus of the review was on green dementia care in accommodation and care settings. The study, and thus the review, also focussed on direct contact with nature (whether that occurs outdoors or indoors) rather than indirect contact (e.g. viewing nature in a photograph, on a TV screen or through a window) or simulated nature (e.g. robot pets). Therefore, this paper is not a full review of all aspects of green dementia care. Originality/value This paper presents an up-to-date review of literature relating to green dementia care in accommodation and care settings. It was successful in increasing understanding to support a pilot study exploring opportunities, benefits, barriers and enablers to interaction with nature for people living with dementia in care homes and extra care housing schemes in the UK. It demonstrated the impacts, value and accessibility of nature engagement in these settings and identified gaps in the evidence base. This review and subsequent pilot study provide a strong platform from which to conduct future research exploring green dementia care in accommodation and care settings.

Download Full-text