scholarly journals ‘All hands-on deck’, working together to develop UK standards for public involvement in research

2020 ◽  
Vol 6 (1) ◽  
Author(s):  
Sally Crowe ◽  
Ade Adebajo ◽  
Hothan Esmael ◽  
Simon Denegri ◽  
Angela Martin ◽  
...  
Keyword(s):  
Public Involvement ◽  
Collaborative Writing ◽  
Research Process ◽  
Main Body ◽  
Draft Standard ◽  
Working Together ◽  
Standards Development ◽  
Reflective Questions ◽  
Research Organisations ◽  
The Uk

Abstract Background Public involvement in research is an established part of the research process in the UK, however there remain questions about what good public involvement in research looks and feels like. Until now public involvement practitioners, researchers and members of the public have looked for answers in examples shared across networks, published case studies, guidance and research articles. Pulling these strands together, the UK Standards for Public Involvement provides six statements (standards) about public involvement in research. They were produced by a partnership of organisations from Scotland, Northern Ireland, Wales and England with contributions from involvement practitioners, public partners, researchers and research funders. Main body Each standard has reflective questions, which are designed to encourage standard users to use approaches and behaviours that improve involvement, over time. The standards are designed to be used as a practical tool, and reflect the agreed hallmarks of good public involvement in research for example, flexibility in approaches used, shared learning, and mutual respect. The standards development process is described from the initial idea and scoping, via the appraisal of existing standard sets and integration of values and principles in public involvement in research. The collaborative writing process of and consultation on the draft standard set is described, together with what changed as a result of feedback. The initiation of a year-long testing programme with forty participating research organisations, the experiential feedback and the resulting changes to the standards is summarised. Conclusion This commentary paper describes, in some detail, a process to develop a set of six standards for public involvement in research in the UK. Producing a complex, national public involvement initiative is not without its challenges, and in supplementary material partnership members reflect on and share their experiences of standards development. The next phase of integration and implementation is explored with concluding comments from those that tested and helped improve the standards.

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

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.

scholarly journals “PPI? That sounds like Payment Protection Insurance”: Reflections and learning from a substance use and homelessness study Experts by Experience group

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Rebecca Foster ◽  
Hannah Carver ◽  
Jason Wallace ◽  
Alex Dunedin ◽  
Stan Burridge ◽  
...  
Keyword(s):  
Substance Use ◽  
Public Involvement ◽  
Life Experiences ◽  
Patient And Public Involvement ◽  
Main Body ◽  
The Public ◽  
Harm Reduction Intervention ◽  
The Rich ◽  
The Uk ◽  
Do So

Abstract Background Patient and Public Involvement in research is important for citizenship, accountability and transparency, and has the practical benefit of helping to ensure its quality and applicability. Involving members of the public in research is becoming increasingly commonplace, in the UK and internationally. It is essential that public involvement is inclusive of individuals and their diverse life experiences, including challenging experiences that may be associated with stigma and social exclusion. The involvement of people with lived/living experience of substance use and homelessness in research is increasing in response to increased recognition of the importance of inclusion and the benefits conferred to research. Main body In this commentary, we share our own experiences of being part of a Patient and Public Involvement group that was convened during a feasibility study of a peer-delivered harm reduction intervention. We are a diverse group but share experience of the field of substance use/homelessness, as people with lived/living experience, and as researchers and practitioners. We share our reflections and learning, as well as offer recommendations for researchers working in our field. Our group worked together to make a positive and deliberate contribution to the study. This did not happen by chance but required the development of mutual trust and respect, with each member having a commitment to support the group for its two-year duration. Short conclusion It is important for researchers to appreciate that meaningful Patient and Public Involvement is very valuable but requires a commitment from all involved. Regarding our field of substance use and homelessness specifically, it is essential that people with these experiences have opportunities to contribute to research and can do so in a meaningful way. People with lived/living experience are able to bring to life the rich tapestry of others’ experiences. However, the involvement must be neither tokenistic nor indifferent to the wider challenges common to these experiences.

National Standards for Public Involvement in Research: missing the forest for the trees

2018 ◽  
Vol 44 (12) ◽  
pp. 801-804 ◽  
Author(s):  
Matthew S McCoy ◽  
Karin Rolanda Jongsma ◽  
Phoebe Friesen ◽  
Michael Dunn ◽  
Carolyn Plunkett Neuhaus ◽  
...  
Keyword(s):  
North America ◽  
Biomedical Research ◽  
Policy Development ◽  
Research Funding ◽  
Public Involvement ◽  
National Standards ◽  
The Public ◽  
Funded Research ◽  
Research Organisations ◽  
The Uk

Biomedical research funding bodies across Europe and North America increasingly encourage—and, in some cases, require—investigators to involve members of the public in funded research. Yet there remains a striking lack of clarity about what ‘good’ or ‘successful’ public involvement looks like. In an effort to provide guidance to investigators and research organisations, representatives of several key research funding bodies in the UK recently came together to develop the National Standards for Public Involvement in Research. The Standards have critical implications for the future of biomedical research in the UK and in other countries as researchers and funders abroad look to the Standards as a model for their own policy development. We assess the Standards and find that despite offering useful suggestions for dealing with practical challenges associated with public involvement, the Standards fail to address fundamental questions about when, why and with whom public involvement should be undertaken in the first place. We show that presented without this justificatory context, many of the recommendations in the Standards are, at best, fragments that require substantial elaboration by those looking to apply the Standards in their own work and, at worst, subject to potentially harmful misapplication by well-meaning investigators. As funding bodies increasingly push for public involvement in research, the key lesson of our analysis is that future recommendations about how public involvement should be conducted cannot be coherently formulated without a clear sense of the underlying goals and rationales for public involvement.

scholarly journals Patient and Public Involvement in doctoral research: Reflections and experiences of the PPI contributors and researcher

2020 ◽  
Author(s):  
Shoba Dawson ◽  
Angela Ruddock ◽  
Veena Parmar ◽  
Rebecca Morris ◽  
Sudeh Cheraghi-sohi ◽  
...  
Keyword(s):  
Public Involvement ◽  
Research Process ◽  
Patient And Public Involvement ◽  
Services Research ◽  
Research Project ◽  
Doctoral Research ◽  
Research Cycle ◽  
The Uk ◽  
Personal Reflections ◽  
The Impact

Abstract Background: Patient and Public Involvement (PPI) has received considerable attention in the last two decades and working in partnership and co-design have now become a prerequisite in health services research in the UK. However, there is a lack of evidence and consistency in recording PPI and related activities. Researchers and PPI contributors are encouraged to record and reflect on the impact of PPI on research. There is significant variation in the way PPI contributors are involved, and it is often limited to some stages of the research cycle than others, without any reflections on the decision-making process for such involvement or any transferable learning. This has resulted in failure to provide a narrative of the research journey including researchers’ and PPI contributors’ personal reflections of involvement. Therefore, this paper provides an exemplar of what PPI in a doctoral research context should look like by providing a detailed account of how PPI was embedded in a doctoral research project, the PPI contributors and researcher’s reflections and key recommendations for involving people specifically in doctoral research.Methods: A reflective approach was taken using data from PPI contributor and researcher notes, e-mail correspondence, meeting notes. Data is presented narratively to reflect on the experiences of involvement throughout the research cycle. Results: Undertaking PPI enhanced the quality and relevance of the doctoral research, contributed to the recruitment of study participants, data analysis and dissemination. Building trust and relationships with PPI contributors was key to continued involvement throughout the life of the project and beyond. There is a need to adopt flexible approaches rather than a one-size-fits-all model when working with PPI contributors. Reflections by PPI contributors and the researcher emphasises that involvement was a rewarding experience. Conclusions: This paper contributes to the wider literature by providing an exemplar of how PPI can be embedded in doctoral research and demonstrates the value of PPI to the research process and the individuals involved. We also present recommendations on how PPI can be incorporated by doctoral and postdoctoral researchers when planning PPI in their research project.

scholarly journals Patient and Public Involvement in doctoral research: Reflections and experiences of the PPI contributors and researcher

2019 ◽  
Author(s):  
Shoba Dawson ◽  
Angela Ruddock ◽  
Veena Parmar ◽  
Rebecca Morris ◽  
Sudeh Cheraghi-sohi ◽  
...  
Keyword(s):  
Health Services Research ◽  
Health Services ◽  
Public Involvement ◽  
Research Process ◽  
Patient And Public Involvement ◽  
Services Research ◽  
Research Project ◽  
Doctoral Research ◽  
The Uk ◽  
The Impact

Abstract Background Patient and Public Involvement (PPI) has received considerable attention in the last two decades and working in partnership and co-design have now become a prerequisite in health services research in the UK. However, there is a lack of evidence and consistency in recording PPI and related activities. Researchers and PPI contributors are encouraged to record and reflect on the impact of PPI on research. There is significant variation in the way PPI contributors are involved, and it is often limited to some stages of the research cycle than others, without any reflections on the decision-making process for such involvement or any transferable learning. This paper aims to highlight how PPI was embedded in a doctoral research project, the PPI contributors and researcher’s reflections and key recommendations for involving people in doctoral research specifically, but also health services research generally.Methods A reflective approach was taken using data from PPI contributor and researcher notes, e-mail correspondence, meeting notes. Data is presented narratively to reflect on the experiences of involvement throughout the research cycle.Results Undertaking PPI enhanced the quality and relevance of the doctoral research, contributed to the recruitment of study participants, data analysis and dissemination. Building trust and relationships with PPI contributors was key to continued involvement throughout the life of the project and beyond. There is a need to adopt flexible approaches rather than a one-size-fits-all model when working with PPI contributors. Reflections by PPI contributors and the researcher emphasises that involvement was a rewarding experience.Conclusions This paper contributes to the wider literature by providing an exemplar of how PPI can be embedded in doctoral research and demonstrates the value of PPI to the research process and the individuals involved. We also present recommendations on how PPI can be incorporated by doctoral and postdoctoral researchers when planning PPI in their research project.

scholarly journals Collaboration with people with lived experience of prison: reflections on researching cancer care in custodial settings

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Renske Visser ◽  
Alyce-Ellen Barber ◽  
Anthony X ◽  
Sue Wheatcroft ◽  
Philip Mullen ◽  
...  
Keyword(s):  
Lived Experience ◽  
Cancer Care ◽  
Public Involvement ◽  
Research Process ◽  
Patient And Public Involvement ◽  
Third Party ◽  
Working Relationships ◽  
Care Needs ◽  
Academic Researchers ◽  
No Harm Principle

Abstract Background Patient and public involvement is increasingly considered important in health research. This paper reflects, from both academic and lived experience perspectives, on involving people with lived experience in a study exploring cancer care in prison and how by doing this it enriched the research process. Methods This paper is based on written and verbal reflections of the lived experience researchers and academic researchers involved in a study exploring the diagnosis and treatment of people with cancer in prison. The study comprised interviews with people with cancer in prison, prison healthcare staff, oncology specialists and custodial staff. Lived experience researchers were involved throughout the research process, including co-conducting interviews with patients and analysing interviews. Results This paper highlights the importance and value of including lived experience researchers across the research process. We reflect on how lived experience of prison shapes the experience of conducting interviews and analysing data gathered in prison. We reflect on the working relationships between academic and lived experience researchers. We demonstrate how prison research is challenging, but collaboration between lived experience and academic researchers can help to better prepare for the field, to ask more meaningful questions and to create rapport with participants. These types of collaborations can be powerful avenues for skill development for both academic and lived experience researchers, but they require an investment of time and a willingness for shared learning. Conclusions For academics and lived experience researchers to collaborate successfully and meaningfully care needs to be taken to develop open, honest and equal working relationships. Skills development for academic and lived experience researchers is important. A commitment to building and maintaining relationships is crucial. Having a third party as a mediator can facilitate and foster these relationships. Particularly with people with lived experience of prison it is essential to put the ‘do no harm’ principle into practice and to have support in place to minimise this.

Radiotherapy research activity and radiographer involvement in the UK

2009 ◽  
Vol 8 (2) ◽  
pp. 105-110 ◽  
Author(s):  
Julie Davies ◽  
Christine Rawlings
Keyword(s):  
Clinical Trials ◽  
New Technologies ◽  
Research Process ◽  
Standards Of Care ◽  
Service Development ◽  
Evidence Based ◽  
Research Activity ◽  
Local Initiatives ◽  
The Uk ◽  
Further Development

AbstractIn the UK, radiotherapy research is being conducted at national and international levels which include multi-centre clinical trials. Local initiatives and trials are also ongoing where work is being performed to develop techniques or protocols for new technologies and service development. Active participation within these studies is now leading to a culture change with radiographers (radiation therapists) becoming an integral part of the research process. There are currently 70 radiographers in the UK participating in research. This accounts for 2.5% of the UK profession. With the extension of role diversification, research radiographers are undertaking many new roles; however, there is still scope for further development. The therapists’ role in working within this research environment is to ensure improved standards of care focussed on evidence-based practice.

scholarly journals Users and Social Science Research: Policy, Problems and Possibilities

1997 ◽  
Vol 2 (3) ◽  
pp. 69-81 ◽  
Author(s):  
B. Rappert
Keyword(s):  
Research Policy ◽  
Social Research ◽  
Public Funding ◽  
Social Science Research ◽  
Academic Research ◽  
User Involvement ◽  
Science Research ◽  
Research Process ◽  
The Uk ◽  
Policy Problems

Recent times have seen a significant reorientation in public funding for academic research across many countries. Public bodies in the UK have been at the forefront of such activities, typically justified in terms of a need to meet the challenges of international competitiveness and improve quality of life. One set of mechanisms advanced for further achieving these goals is the incorporation of users’ needs into various aspects of the research process. This paper examines some of the consequences of greater user involvement in the UK Economic and Social Research Council by drawing on both empirical evidence and more speculative argumentation. In doing so it poses some of the dilemmas for conceptualizing proper user involvement.

Positionality and Ethics in the Qualitative Research of Migrants’ Homes

2014 ◽  
Vol 19 (1) ◽  
pp. 111-120 ◽  
Author(s):  
Anna Pechurina
Keyword(s):  
Qualitative Research ◽  
Power Distribution ◽  
Ethical Decision Making ◽  
Research Process ◽  
Ethical Decisions ◽  
Ethnographic Studies ◽  
Social Positioning ◽  
Rich Data ◽  
The Uk

This article discusses ethical decisions in the qualitative research of homes, with particular focus on a situation, in which a researcher studies his/her own migrant community. While exploring more common topics, such as negotiating access and receiving permission to photograph within participants’ homes, this article will also highlight issues that occur specifically within community-based ethnographic studies among Russian migrants. Using examples from the study of Russian immigrants’ homes in the UK, this article raises important questions of social positioning and power distribution within studied community. It will demonstrate the complexities of ethical decision making at different stages of the research process, which reflects the constantly changing relationship(s) between the cultural and social backgrounds and identities of researchers and participants. The insider and outsider role of the researcher is relative and the constant need to balance it, while simultaneously creating difficult ethical dilemmas, often reveals rich data and moves the whole research process forward.

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