Abstracts from the NIHR INVOLVE Conference 2017

Plain language summaryResearch should benefit society at large. Involving citizens those who are affected by research may not only increase the quality, but can also push research towards generating greater societal benefits and relevant outcomes for citizens. Including citizens in research also has ethical implications, which necessitate structured guidance on ‘how to’ meaningfully involve them. In our project, we invited a multi-stakeholder group consisting of researchers from multiple disciplines, citizen scientists, youth and patient advocates to co-create a guide on ‘how to’ meaningfully involve citizens in research. In five consecutive workshops, we discussed how the characteristics of interactions between researchers and citizens (e.g., building trustful relationships and communication) and what a possible project steering structure enabling meaningful public involvement in research could look like. As a result of these workshops, the PPIE ‘How to’ Guide for Researchers was developed to support the implementation of ‘Patient and Public Involvement and Engagement’ (PPIE) activities and informed a PPIE Implementation Programme funding public involvement activities in Austria.Involving citizens in research is not widely utilised across research disciplines and countries. It requires the readiness of researchers and their organisations as well as guides on ‘how to’ successfully involve citizens in a meaningful way. Including the patient and citizen voice in research activities has been most frequently demonstrated in health research, however, is implemented along various degrees of involvement – from passively receiving information about science to actively involving the citizens in steering projects and research activities. In this commentary, we aim to report a multi-stakeholder co-creation process developing ‘Patient and Public Involvement and Engagement’ (PPIE) activities across disciplines to provide guidance for researchers and the public. We use Ludwig Boltzmann Society’s (LBG) organisational framework as a case study, hence it consists of research institutes ranging from the life sciences to humanities and therefore represents a well-suited research environment for this endeavour. In a co-creation approach – to accomplish a shared understanding of public involvement in research among different stakeholders – a multi-stakeholder group comprising 11 researchers from natural sciences, life sciences, social sciences and humanities, and 13 citizens (such as patient advocates, young people and citizen scientists) were involved. In five consecutive workshops, we co-developed the nature of interactions between citizens and researchers, as well as governance structures enabling meaningful involvement in research. The workshops’ content was informed by an initial literature review. As a result of this process, the PPIE ‘How to’ Guide for Researchers was developed to support the implementation of involvement activities in their research projects according to the public involvement principles. These principles informed assessment criteria for the newly established PPIE Implementation Programme at LBG. It provides funding and support for public involvement activities in research to embed a sustainable and meaningful implementation of public involvement activities in Austria.

Background: With type 2 diabetes prevalence rising, low energy diets (total diet replacement and food-based low energy diets) are increasingly used to induce weight loss and achieve diabetes remission. The effectiveness of these diets has been primarily tested in the UK white population but not in the south Asian population at high risk of diabetes. Obtaining the opinion of members of the community on what would constitute a culturally acceptable diet is essential for successful interventions aiming to achieve diabetes remission in south Asians. Methods: We organised two patient and public involvement activities in the North West of England to understand views of people from the south Asian population on whether low energy diets (850 Kcal) in the form of total diet replacement or food-based meals, are acceptable dietary interventions to achieve type 2 diabetes remission. Results: Thirteen people, with either type 2 diabetes or having someone with diabetes in the family attended a virtual or a face-to-face meeting. Low energy total diet replacement in the form of soups and shakes was considered unacceptable, while there was a preference for a culturally tailored low energy food-based diet. Ready-made portion controlled catered meals were suggested as a likely approach to improve adherence. Conclusions: This work provided valuable insights to shape a future study looking at the feasibility of a catered meal low-energy dietary intervention to induce T2D remission in primary care within the south Asian population.

Background: With type 2 diabetes prevalence rising at alarming rates, low-calorie diets (total diet replacement and food-based low-calorie diets) are increasingly used to induce weight loss and achieve diabetes remission. The effectiveness of these diets has been primarily tested in the UK white population but not in the Southeast Asian population at high risk of diabetes. Obtaining the opinion of members of the community on what would constitute a culturally acceptable diet is essential for successful interventions aiming to achieve diabetes remission in the southeast Asian population. Methods: We organised two patient and public involvement activities in the North West of England to understand views of people from the Southeast Asian population on whether low-calorie diets (850 Kcal) in the form of total diet replacement or food-based meals, are acceptable dietary interventions to achieve diabetes remission. Results: Thirteen people, with either type 2 diabetes or having someone with diabetes in the family attended a virtual or a face-to-face meeting. Low-calorie total diet replacement in the form of soups and shakes was considered unacceptable, while there was a preference for a culturally tailored low-calorie food-based diet. Ready-made portion controlled catered meals were suggested as an excellent approach to improve adherence. Conclusions: This work provided valuable insights to shape a future study looking at the feasibility to reverse diabetes in primary care through dietary intervention in the Southeast Asian population.

Measuring the impact of patient and public involvement: the need for an evidence base

BackgroundThere is an absence of accessible, social, and sustainable physical activity options for people with chronic breathlessness (CB). Walking football (WF) could be an option due to its inclusivity, cultural-embeddedness,...

Based on the China General Social Survey (CGSS) in 2010, this article investigates the impact of hukou status on urban residents’ public consciousness and public participation. Public consciousness includes the self-reported ability regarding political participation, the self-reported confidence in evaluating the government’s activity, the anticipation of the effectiveness of public participation, and the individual attitude indicating public consciousness, while public participation includes voting for neighborhood committee members, voting for property owner committee members, participating in public activities in the local community, and being involved in group events. We find that non-local hukou status has some negative effects on migrants’ public consciousness, and the effects are not significantly weakened by increases in migrants’ income or education levels. Migrants are more passive in public participation, mainly because of the institutional constraints. However, concerning involvement in group events or attitudes toward unfair treatment from the government, migrants are not that different from local citizens. That is to say, if no institutionalized mechanism effectively responds to migrants’ reasonable appeals, migrants might fight for their rights by engaging in public activities, such as group events, which may lead to social instability. We also find that urban residents with higher education levels or more income have stronger public consciousness, although their public participation is not necessarily more frequent.

Involving patients and the public in health research helps ensure that studies are of high quality and focus on the issues that matter most to the people affected. However, researchers do not always explain clearly how they have done this, making it hard to understand how these voices have shaped the research. This study looked at over 500 research papers published by authors from a UK Russell Group university to see how well the involvement of patients and the public was reported. Only one in five papers mentioned how patients and the public were involved in the main text, and fewer still acknowledged contributions from patients or public partners. Very few papers included patient authors or collaborators from charities and community organisations. Although most papers were freely available online, only 10% included a plain English summary to help non-specialists understand the research. To better understand these findings, the researchers worked closely with a group of patient co-authors who had experience collaborating with university researchers. Together, they developed seven recommendations to help improve how the involvement of patients and the public is reported in future studies. This work highlights the need for universities and research institutes to reflect on their practices and provide better support for researchers to work meaningfully and transparently with patients and the public. Clear and consistent reporting of the involvement of patients and the public is essential for building trust, improving research quality, and ensuring that health research truly serves the communities it aims to help. Patient and Public Involvement and Engagement is important to ensure research addresses the issues that matter most to patients and the public. However, reporting and publishing of these activities is variable and inconsistent. This rapid review aimed to assess how effectively, consistently, and transparently Patient and Public Involvement and Engagement is reported on in papers published by authors affiliated with a heath research institute at a UK Russell Group university. A rapid review of all papers published by institute-affiliated authors (1st August 2021 to 31st December 2024) identified using PubMed. We also consulted with a group of patient co-authors to understand their experiences of being a Patient and Public Involvement and Engagement co-author in collaboration with researchers from the same institute. We retained and reviewed 523 papers for inclusion of Patient and Public Involvement and Engagement. There was significant variation in the reporting across the papers included. Overall, 21% of papers had reference to Patient and Public Involvement and Engagement activity in the main body of the paper, and 17% of papers included Patient and Public Involvement and Engagement in the acknowledgements. In terms of co-authorship, 5% of papers included an author with an affiliation to a charity/non-governmental organisation that represented Patient and Public Involvement and Engagement -related interested, e.g. Alzheimer’s Society, Caribbean and African Health Network and 1% of papers included a patient/lived-experience author. A total of 97% of papers were published open access but only 10% of articles included in this review had a plain English or lay summary. Only one paper included a published GRIPP2 form. The Patient and Public Involvement and Engagement group reviewed and contextualised our findings, supporting analysis and development of seven key recommendations to improve comprehensive, consistent, and transparent reporting of Patient and Public Involvement and Engagement in health research at an institute level. This work demonstrates the challenges that Patient and Public Involvement and Engagement faces and the importance of institutions reflecting on the practices of their academics, and the structures they put in place to encourage good and equitable practices of working with patents and the public.

Background: Patient and Public Involvement (PPI) is an important component of healthcare research. Conducting PPI within paediatric palliative care research requires specific ethical and practical considerations. Regular reviews of PPI activity are important. Aim: To evaluate a paediatric palliative care research centre’s PPI activity to determine what went well, or less well; and how future activities can be improved. Design: Two stage evaluation: first a review of PPI study logs; second a qualitative exploration using a survey, structured interviews and a focus group. Data were analysed thematically. Settings/participants: Parents of children with life-limiting conditions, bereaved parents and researchers, all engaged in PPI activity within a paediatric palliative care research centre. Findings: The review of PPI logs for 15 studies highlighted the crucial role of funding in enabling PPI throughout the research. Eight parents completed the survey, 4 parents were interviewed and 12 researchers participated in a focus group. Three themes were developed: Clarity of processes and purpose; balanced relationships created a safe space; and mutual respect and value for PPI. These themes highlight what is working well within the Centre’s approach to PPI and the opportunities to improve. Conclusions: To undertake meaningful PPI in paediatric palliative care research, adequate time and resources are required. Roles, processes and expectations must be explicitly agreed. Establishing relationships ensures trust and enables authenticity and vulnerability. In addition to improving research, PPI has personal benefits for researchers and parents. The evaluation led to the development of a ‘route map’ for establishing an impactful PPI group for paediatric palliative care research.

The Road Council is the adviser to the Japanese Ministry of Construction (MOC) on matters of road policy at the national level. To be more responsive to society’s needs, the council implemented public involvement (PI) activities to solicit people’s opinions about the New 5-Year Road Improvement and Management Program. The council issued a series of reports that provided information to the people and solicited their opinions before it made its final recommendations to MOC. The focus was on the effects that people’s opinions have on the road policies contained in the reports. The relationship between road policies set by the Road Council and MOC and people’s opinions was analyzed. A document-analysis methodology for extracting key words representing policy measures and identifying policy fields was developed. The study assumed that the number of key words indicates the degree of emphasis in the report. Frequency of opinions for each policy field also was determined. Relationships between the number of key words and the frequency of opinions were analyzed using Kendall’s correlation coefficient. Causal relations within each policy field were analyzed. The results clearly established the influence of people’s opinions on the resulting road policies. The findings also showed two kinds of changes in the documents: ( a) changes initiated by people’s opinions and ( b) changes initiated by the Road Council. So far, PI activities have been applied only at the national planning level. These activities also can be applied to other levels and aspects of planning.

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...

PurposeThe use of online focus groups to explore children and young people's (CYP) perspectives of inequalities in health and associated “sensitive” topics raises important ethical and methodological issues to consider. The purpose of the paper is to discuss lessons learnt from navigating the authors' way through some of the key challenges the authors encountered when researching inequalities in health with CYP through online focus groups.Design/methodology/approachIn the paper, the authors draw on reflections and notes from the fieldwork design, public involvement and engagement (PIE) activities and data collection for their research project.FindingsCollecting data online influenced the authors' ability to develop rapport and relationships with CYP and to provide effective support when discussing sensitive topics. The authors note that building activities to develop rapport with participants during recruitment and data collection and establishing clear support and safeguarding protocols helped navigate challenges of online approaches around effective and supportive participant engagement.Originality/valueThe paper highlights that despite ethical and methodological challenges of conducting online focus groups with CYP on potentially sensitive topics, the adoption of practical steps and strategies before, during and following data collection can facilitate the safe participation of CYP and generate useful and valid data in meaningful and appropriate ways.

This paper focuses on urban regeneration practices in central urban areas, aiming to find key points for reshaping the publicness of urban spaces by exploring the morphological features of public spaces and the spatial distribution patterns of public activities. Now that China’s urbanization process has stabilized, large-scale regeneration is no longer applicable to the current urban environment, and urban morphology has proved to be significantly useful in understanding and designing the built environment. However, current research lacks quantitative studies on morphology and public activities, and thus is hardly instructive for the cognition and design of spatial morphology in specific locations. Therefore, this paper attempts to subdivide spatial morphology at the level of “micro-renewal” or “micro-renovation” in order to explore the impact of spatial morphology on public participation in cities. The site chosen for this study is Xinjiekou in Nanjing. As a key area of two important arteries in the center of Nanjing, Xinjiekou has been a gathering place for a variety of commercial forms, such as finance, retail department stores, restaurants, and entertainment, and has been the commercial and financial center of Nanjing since the 1940s. In an on-site observation of urban development and pedestrian flow in the Xinjiekou area, the study found that despite its status as the area with the highest degree of spatial accessibility and public participation, its public space has gradually lost its attractiveness to residents, who lack a sense of participation and place identity. Based on the study of urban public spaces, both accessibility and choice play an important role in increasing public participation. Therefore, this study combined observation and quantitative analysis of Space Syntax to obtain the distribution of accessibility, choice, and public activity. Based on the results of the analysis, this research uses GWR as the statistical method to clarify the correlation between different variables. The final conclusion is that when the space type is a path with high choice value and the paths are connected, the enhancement of accessibility and choice plays an important role in promoting public participation. This statistically based empirical study of testable correlations is very helpful for the perception of location-specific spaces with high levels of interpretability and confidence. Thus, it further guides the design and has a high reference value for future spatial planning.

Department of Energy (DOE), Idaho Department of Environmental Quality (DEQ), and U.S. Environmental Protection Agency (EPA) will participate in the public involvement activities outlined in this plan. Collectively, DOE, DEQ, and EPA are referred to as the Agencies. Because history has shown that implementing the minimum required public involvement activities is not sufficient for high-visibility cleanup projects, this plan outlines additional opportunities the Agencies are providing to ensure that the public’s information needs are met and that the Agencies can use the public’s input for decisions regarding remediation activities.

There is increasing evidence that stigma negatively affects the health and quality of life of people living with persistent pain. While there is a need to tackle stigma, the few studies investigating potential interventions to date have focused on individual-level interventions. However, self-stigma is experienced alongside external stigma that manifests in both private and public spheres, including interactions with healthcare providers and policies that affect the lives of people with pain. This case reports explored the potential to use zines, an art-based medium rooted in social justice activism, as an anti-stigma tool, in the context of persistent pain. This paper describes the collaborative Patient and Public Involvement and Engagement (PPIE) process to (1) develop and deliver zine-making workshops and (2) shape future research to understand zines as a potential tool to target pain-related stigma across the multilevel health ecosystem. Collaboration with patient advisors highlighted the need for inclusivity to be at the centre of zine workshops. Then considering potential for future research, people living with pain themselves and general practitioners were identified as priority groups to evaluate the impact of zines on pain-related stigma. This case report documents and shares learning about how PPIE can provide essential insights into developing and evaluating an inclusive intervention with potential to target stigma for people with pain.

Public participation, sometimes referred to as public involvement or engagement, is often a mandated process in agency-led environmental and land use planning with major implications for environmental justice. Theoretically and in practice, quantity and quality of these public participation activities remain variable in the United States. This article reports on residents' experiences in two distinct frontline communities, those living near the proposed New International Trade Crossing in Detroit, Michigan and the Port of Long Beach in Long Beach, California. Recent studies suggest that persons of color and low-income are disproportionately exposed to air and noise pollution from heavy-duty engines at freight gateways (e.g., ports, borders). Synthesizing findings from qualitative interviews with community members and leaders, content analysis of environmental assessments, and observations at public events, we describe recent freight land use deliberations, as well as public participation experiences, catalysts, and barriers during these deliberations in the two study communities. Drawing directly on perspectives of community members and leaders as public participants, we report how agency-led public participation opportunities, while extensive, may be experienced as confusing, perfunctory, discriminatory, and burdensome. Further, public participation generally entails intensive community organizing efforts and can become a source of chronic stress for active residents of frontline communities— many who have been historically and repeatedly marginalized during land use planning and by its outcomes. We conclude by reconsidering theoretical frameworks, and offering concrete strategies for decision makers in a variety of sectors, such as transportation, housing, planning, and public health, to improve procedural justice and promote environmental justice.