Public Involvement Process Research Articles

Developing a person-centered stated preference survey for dementia with Lewy bodies: value of a personal and public involvement process.

The development of high-quality stated preference (SP) surveys requires a rigorous design process involving engagement with representatives from the target population. However, while transparency in the reporting of the development of SP surveys is encouraged, few studies report on this process and the outcomes. Recommended stages of instrument development includes both steps for stakeholder/end-user engagement and pretesting. Pretesting typically involves interviews, often across multiple waves, with improvements made at each wave; pretesting is therefore resource intensive. The aims of this paper are to report on the outcomes of collaboration with a Lewy body dementia research advisory group during the design phase of a SP survey. We also evaluate an alternative approach to instrument development, necessitated by a resource constrained context. The approach involved conducting the stages of end-user engagement and pretesting together during a public involvement event. A hybrid approach involving a focus group with breakout interviews was employed. Feedback from contributors informed the evolution of the survey instrument. Changes to the survey instrument were organized into four categories: attribute modifications; choice task presentation and understanding; information presentation, clarity and content; and best-best scaling presentation. The hybrid approach facilitated group brainstorming while still allowing the researcher to assess the feasibility of choice tasks in an interview setting. However, greater individual exploration and the opportunity to trial iterative improvements across waves was not feasible with this approach. Involvement of the research advisory group resulted in a more person-centered survey design. In a context constrained by time and budget, and with consideration of the capacity and vulnerability of the target population, the approach taken was a feasible and pragmatic mechanism for improving the design of a SP survey.

The Added Value and Unintended Negative Consequences of Involvement Processes

Abstract Background Public involvement is widely considered a way to improve health and quality of health services. The research literature reveals ambiguities concerning the added value and the unintended negative consequences of public involvement processes. The aim of this study was to identify, synthesize and present an overview of added value and unintended negative consequences of public involvement processes in the planning, development, and implementation of community health services. Methods 36 peer-reviewed articles retrieved from a systematic search (published in a review article) in the CINAHL, Cochrane Library, Embase, PsycINFO, PubMed, ProQuest, and Scopus databases in 2021 were coded and extracted according to the aim of the study. A thematic synthesis was conducted involving (1) line-by-line text coding, (2) developing descriptive themes and (3) generating analytical themes. Results Two main themes with corresponding subthemes were identified providing an overview of the added value of public involvement processes (theme 1) at individual, service, and political levels. Unintended negative consequences (theme 2) show how individual resources is required, and uncertainty about the effect of involvement on services and power differences among providers and the public revealed. Conclusions The added value of public involvement processes is primarily reported on an individual and service level and often accompanied by unintended negative consequences. Professional facilitators and recruitment of a wider group of participants representing vulnerable groups is important to promote equality in public involvement.

Is bureaucracy being busted in research ethics and governance for health services research in the UK? Experiences and perspectives reported by stakeholders through an online survey

BackgroundIt has long been noted that the chain from identification of need (research gap) to impact in the real world is both long and tortuous. This study aimed to contribute evidence about research ethics and governance arrangements and processes in the UK with a focus on: what works well; problems; impacts on delivery; and potential improvements.MethodsOnline questionnaire widely distributed 20th May 2021, with request to forward to other interested parties. The survey closed on 18th June 2021. Questionnaire included closed and open questions related to demographics, role, study objectives.ResultsResponses were received from 252 respondents, 68% based in universities 25% in the NHS. Research methods used by respondents included interviews/focus groups (64%); surveys/questionnaires (63%); and experimental/quasi experimental (57%). Respondents reported that participants in the research they conducted most commonly included: patients (91%); NHS staff (64%) and public (50%). Aspects of research ethics and governance reported to work well were: online centralised systems; confidence in rigorous, respected systems; and helpful staff. Problems with workload, frustration and delays were reported, related to overly bureaucratic, unclear, repetitive, inflexible and inconsistent processes. Disproportionality of requirements for low-risk studies was raised across all areas, with systems reported to be risk averse, defensive and taking little account of the risks associated with delaying or deterring research. Some requirements were reported to have unintended effects on inclusion and diversity, particularly impacting Patient and Public Involvement (PPI) and engagement processes. Existing processes and requirements were reported to cause stress and demoralisation, particularly as many researchers are employed on fixed term contracts. High negative impacts on research delivery were reported, in terms of timescales for completing studies, discouraging research particularly for clinicians and students, quality of outputs and costs. Suggested improvements related to system level changes / overall approach and specific refinements to existing processes.ConclusionsConsultation with those involved in Health Services Research in the UK revealed a picture of overwhelming and increasing bureaucracy, delays, costs and demoralisation related to gaining the approvals necessary to conduct research in the NHS. Suggestions for improvement across all three areas focused on reducing duplication and unnecessary paperwork/form filling and reaching a better balance between risks of harm through research and harms which occur because research to inform practice is delayed or deterred.

Adapting Patient and Public Involvement processes in response to the Covid-19 pandemic.

The COVID-19 pandemic brought rapid and major changes to research, and those wishing to carry out Patient and Public Involvement (PPI) activities faced challenges, such as restrictions on movement and contact, illness, bereavement and risks to potential participants. Some researchers moved PPI to online settings during this time but remote consultations raise, as well as address, a number of challenges. It is important to learn from PPI undertaken in this period as face-to-face consultation may no longer be the dominant method for PPI. UK stay-at-home measures announced in March 2020 necessitated immediate revisions to the intended face-to-face methods of PPI consultation for the ESORT Study, which evaluated emergency surgery for patients with common acute conditions. PPI plans and methods were modified to all components being online. We describe and reflect on: initial plans and adaptation; recruitment; training and preparation; implementation, contextualisation and interpretation. Through first-hand accounts we show how the PPI processes were developed, experienced and viewed by different partners in the process. While concerns have been expressed about the possible limiting effects of forgoing face-to-face contact with PPI partners, we found important benefits from the altered dynamic of the online PPI environment. There were increased opportunities for participation which might encourage the involvement of a broader demographic, and unexpected benefits in that the online platform seemed to have a 'democratising' effect on the meetings, to the benefit of the PPI processes and outcomes. Other studies may however find that their particular research context raises particular challenges for the use of online methods, especially in relation to representation and inclusion, as new barriers to participation may be raised. It is important that methodological challenges are addressed, and researchers provide detailed examples of novel methods for discussion and empirical study. We report a process which involved people with lived experience of emergency conditions and members of the public. A patient member was involved in the design and implementation, and two patients with lived experience contributed to the manuscript.

Patient public involvement (PPI) in health literacy research: Engagement of adults with literacy needs in the co-creation of a hospital-based health literacy plan.

People with literacy needs can experience many challenges in accessing, understanding and using health services and health information. Such challenges can adversely impact patient-provider interactions and ultimately, health outcomes. Healthcare providers need to be aware of health literacy (HL) to address the demands of healthcare systems, improve their interactions with communities and patients and promote patient engagement for improved health outcomes. This paper reports on a process of patient and public involvement (PPI) with participants in an adult literacy programme acting as PPI contributors to identify priority areas for a local hospital HL action plan and to develop a protocol for a PPI process with other groups. A qualitative community-based participatory research study design informed by principles of PPI was undertaken, drawing on the tools of participatory and visual methods, open discussion and workshop format to facilitate a process of co-creation. Three workshops with six PPI contributors took place to identify issues to be included in the hospital action plan. PPI contributors identified issues and grouped these into priority areas using discussion and ranking procedures. Key areas prioritised for HL action by the PPI contributors were: verbal communication, emphasising the patient's right to understand, and improved understanding of medication use. These were incorporated into the action plan. The workshop format and process were deemed acceptable to the group and input on improvements will be incorporated into further work in this area. PPI acts as a lever in the knowledge translation process. Genuine engagement with service users can meaningfully contribute to relevant and sustainable changes to services as well as foster the empowerment of service users. Members of the public with literacy needs actively participated in the co-creation of a HL action plan for a local hospital and in the development of a protocol for a patient and public process for HL research.

Factors Influencing the Roles of Environmental Non-Governmental Organizations (ENGOs) on Environmental Bargaining in Yunnan, China

Environmental pollution has become a serious problem in China due to the development of industrialization and urbanization since the reform policies and opening of the economy. Nowadays, ENGOs function as a third party for environmental protection through various awareness and bargaining activities. This study aims to analyze the role of ENGOs in environmental bargaining (EB) and the influencing factors by combining the EB theories. A structural equation model of ENGOs participation in EB was established to compare the role of ENGOs in bargaining the “Kunming PX incident” and the “Nujiang dam incident” in Yunnan, China. The findings show that complex powers and interests play a vital role during EB. The relationship network, media, and human resources are among the most significant factors influencing the role of ENGO out of all the other factors such as funding, openness, knowledge, scale and experience. The strength of ENGO relationship network is crucial for solving environmental problems. This study also suggests that in order for ENGOs to effectively engage in EB, they should be placed in the proper context in the negotiating process. It is necessary to set up efficient public involvement platforms and processes for effective EB.

Co-producing a physical activity intervention with and for people with severe mental ill health – the spaces story

ABSTRACT SPACES (Supporting Physical Activity through Co-production in people with Severe Mental Illness) is a study which aims to develop an intervention to increase physical activity created with and for people with severe mental ill health (SMI), their carers and professionals involved in physical activity and/or severe mental ill health. People with SMI are less physically active than the general population and have an increased likelihood of experiencing long-term physical health conditions such as cardiovascular and respiratory diseases, diabetes and obesity. The SPACES team employed a comprehensive process of Patient and Public Involvement and Engagement (PPIE) work embedded within a co-production strategy. Researchers worked together from the point of inception with people with lived experience, two of whom became co-applicants, to design and carry out the intervention development stage of the study. This included PPIE work and an iterative process of focus groups and interviews with various stakeholders and a consensus group made up of multiple stakeholders with lived, caring and professional experience. Here, we describe the co-production model we used, the benefits, challenges, achievements and areas for learning and improvement. We offer co-production principles and practical strategy, which we hope will be used, modified, personalised and built on by others. We also offer the idea that laying out the co-production strategy to be employed prior to a study commencing and then comparing how that strategy was or was not met could be a step towards creating more accountability and academic rigour in co-production.

STUDY OF COMMUNITY PARTICIPATION IN THE ESTABLISHMENT OF QANUN OF VILLAGE LAW IN ACEH BESAR DISTRICT

This article wants to analyze community participation in the process of drafting qanun of village in Aceh Besar District. Community participation is very important in drafting qanun because good law is based on efforts to ensure that the principle of participation runs well. This research was conducted by examining legal materials related to the formation of good law, especially qanun. Based on these provisions, then the process of community involvement in each stage of the formation of the qanun of village is explored. This study finds that public participation in the formation of qanun of village is still limited. This limitation is caused by a number of factors, including socialization that has not been carried out optimally by the village leadership. In addition, there is the problem of the availability of a very small budget for the process of forming the qanun. It is recommended to the Aceh Besar District Government to prepare guidelines for the drafting of the village qanun, in which the public involvement process is well regulated.

PP124 The Importance Of Flexible PPI Approaches: Case Study On Flash Glucose Monitoring

IntroductionHealth Technology Wales (HTW) review guidance 3 years after publication to establish if reassessment is warranted because, for example, new evidence has become available. Since the publication of guidance on flash glucose monitoring (FGM) in 2018, HTW introduced a patient and public involvement (PPI) process with novel approaches to flexible engagement. This enabled HTW to include three streams of patient evidence into the review of FGM devices.MethodsHTW’s Patient and Public Involvement Standing Group (PPISG) considered appropriate methods of engagement using the HTW Patient and Public Involvement Mechanism Tool. This tool considers the nature of the health technology, the presence of appropriate patient organizations and questions that can be put to patients, as well as other approaches for obtaining patient evidence.ResultsHTW contacted Diabetes Cymru and met with them to discuss contributing to the appraisal of FGM devices. Diabetes Cymru produced a patient submission summarizing the experiences of their patient network, with particular focus on the expansion of the technology to closed-loop insulin systems. Diabetes Cymru later attended HTW’s Appraisal Panel committee and gave a presentation. Additionally, HTW conducted a patient evidence literature review. This review summarized published qualitative studies on a range of perspectives, including carer perspectives, family perspectives, children and adolescences perspectives as well as considerations from specific environments, such as schools, workplaces, homes, care homes and communities. In addition to new clinical and cost effectiveness evidence, this PPI input was used to formulate new guidance recommending more widespread adoption of FGM.ConclusionsThe introduction of flexible approaches to PPI enabled HTW to gain patient evidence from multiple sources. This ensured greater patient representation and a more detailed understanding of the role of FGM devices across different patient communities. This added considerable richness to the patient evidence, which is vital to understand the everyday impacts of FGM and its use amongst patients. Combining flexible PPI with the new clinical and cost effectiveness evidence resulted in a change in the original guidance recommendation.

CN2 A public involvement process to enhance diversity in technology clinical trials

Clinical trials exist to determine safety and efficacy of emerging interventions and should be representative of all patients. The digital Experimental Cancer Medicine Team (dECMT) conducts technology clinical trials (TechCT) to develop new technologically-enabled healthcare pathways through patient involvement. However, there is a growing appreciation of the digital divide in healthcare technology which may limit access to technologically-enabled healthcare pathways.

The added value and unintended negative consequences of public involvement processes in the planning, development and implementation of community health services: Results from a thematic synthesis.

Public involvement is widely considered a means to improve health and quality of health services. The research literature reveals ambiguities concerning added value and unintended negative consequences of public involvement processes. The aim of this study is to identify, synthesise and present an overview of added value and unintended negative consequences of public involvement processes in the planning, development and implementation of community health services. Data from 36 peer-reviewed articles retrieved from a systematic search in the CINAHL, Cochrane Library, Embase, PsycINFO, PubMed, ProQuest, and Scopus databases in October 2019 and updated in April 2021 were extracted. A three-step thematic synthesis was conducted involving (1) line-by-line text coding, (2) developing descriptive themes and (3) generating analytical themes. Two main themes along with their corresponding themes provided an overview of the added value of public involvement processes at the individual, service and political levels. Unintended negative consequences concerning individual resources, uncertainty about the effect of involvement and power differences were revealed. Added value of public involvement processes is primarily reported on an individual and service level. The added value seems to be accompanied by unintended negative consequences. Training of professional facilitators and recruitment of participants that come from vulnerable groups could help promote equality in public involvement. Unintended negative consequences need to be further explored in future evaluations in order to achieve the desired goals of public involvement.

The role of municipalities and landscape architects in the public involvement processes related to green infrastructure developments

Abstract While urban green infrastructure has a great importance with regard to the urban climate, human welfare and well-being due to the positive impact of ecosystem services, it also offers opportunities to practice democracy. The quality of a green infrastructure development process depends on the quality of the partnership between the many stakeholders. Municipalities have a permanent task and a role to play in building partnerships. Landscape architects often go beyond their engineering tasks to give priority to their professional vocations in public involvement processes. In our research, we examine the roles and responsibilities of these main stakeholder groups.

Informing the development of an E-platform for monitoring wellbeing in schools: involving young people in a co-design process

BackgroundThe use of new technologies and methodologies in young people’s mental health research is needed to allow more frequent and reliable sampling. Mobile applications and e-platforms create exciting potential for the collection of large-scale cohort data, however there are various feasibility and ethical issues to consider. Consultation with young people is needed to inform the research agenda, and ensure these technologies are engaging, useful and safe. This article describes the process of Public and Patient Involvement (PPI) with a sample of young people in London, with the aim of i) informing the development of a mood-monitoring e-platform, and ii) providing feedback and advice for researchers developing web-based technologies in the mental health field.MethodsA total of 26 young people were consulted across four advisory group co-design sessions. All young people were students enrolled at one of the participating London based sixth form colleges, and voluntarily attended a workshop session. Audio recordings of the sessions were analysed using a thematic analysis framework.ResultsWe found that young people were engaged in discussions around mobile health technologies and valued the opportunity to collaborate throughout the early stages of the development process The advisory groups identified key considerations for future web-development work to encourage engagement and prolonged use, including, the promotion of trust and transparency, consideration of accessibility, provision of support, production of engaging and functional design, and acknowledgment of specific contextual influences surrounding young people’s wellbeing.ConclusionsInvolving young people in the development process of e-health technologies contributes to optimising the successful adoption and prolonged usage of new methodologies. The thematic map and informant examples can be used to guide researchers interested in developing web-based technologies in the mental health field and will be directly applicable to the development of a mood-monitoring e-platform.

The Role of Natural History Collections in Public Engagement for Enhancing Biodiversity Research

Citizen science biodiversity monitoring projects are becoming very common. It is generally accepted that these joint projects, of scientists and the public, have a positive effect on biodiversity and conservation education programs as well as on policy-makers opinion Ganzevoort et al. (2017). Yet, there is still a debate on the quality of the data collected in citizen science monitoring schemes, and especially on the benefits to high-quality research. Here, I present an example of how collection-based research and involvement of the public (non-taxonomists) in taxonomical education, i.e., advanced citizen science, can enhance research on scorpion diversity in Israel. Furthermore, the process of public involvement in monitoring and especially the prerequisites needed for this process, contributed to high-quality research, that in turn is enhancing biodiversity science. Considering this, I will discuss the basic stages required for successful public engagement in high-quality biodiversity research and monitoring schemes.

Crowdsourcing Bike Share Station Locations

Problem, research strategy, and findings: Planners increasingly involve stakeholders in co-producing vital planning information by crowdsourcing data using online map-based commenting platforms. Few studies, however, investigate the role and impact of such online platforms on planning outcomes. We evaluate the impact of participant input via a public participation geographic information system (PPGIS), a platform to suggest the placement of new bike share stations in New York City (NY) and Chicago (IL). We conducted 2 analyses to evaluate how close planners built new bike share stations to those suggested on PPGIS platforms. According to our proximity analysis, only a small percentage of built stations were within 100 feet (30 m) of suggested stations, but our geospatial analysis showed a substantial clustering of suggested and built stations in both cities that was not likely due to random distribution. We found that the PPGIS platforms have great promise for creating genuine co-production of planning knowledge and insights and that system planners did take account of the suggestions offered online. We did not, however, interview planners in either system, and both cities may be atypical, as is bike share planning; moreover, multiple factors influence where bike stations can be located, so not all suggested stations could be built.Takeaway for practice: Planners can use PPGIS and similar platforms to help stakeholders learn by doing and to increase their own local knowledge to improve planning outcomes. Planners should work to develop better online participatory systems and to allow stakeholders to provide more and better data, continuing to evaluate PPGIS efforts to improve the transparency and legitimacy of online public involvement processes.

How embedded is public involvement in mainstream health research in England a decade after policy implementation? A realist evaluation.

ObjectivesTo explore how embedded patient and public involvement is within mainstream health research following two decades of policy-driven work to underpin health research with patient and public involvement in England.MethodsRealist evaluation using Normalization Process Theory as a programme theory to understand what enabled patient and public involvement to be embedded as normal practice. Data were collected through a national scoping and survey, and qualitative methods to track patient and public involvement processes and impact over time within 22 nationally funded research projects.ResultsIn research studies that were able to create reciprocal working relationships and to embed patient and public involvement this was contingent on: the purpose of patient and public involvement being clear; public contributors reflecting research end-beneficiaries; researchers understanding the value of patient and public involvement; patient and public involvement opportunities being provided throughout the research and ongoing evaluation of patient and public involvement. Key contested areas included: whether to measure patient and public involvement impact; seeking public contributors to maintain a balance between being research-aware and an outsider standpoint seen as ‘authentically’ lay; scaling-up patient and public involvement embedded within a research infrastructure rather than risk token presence and whether patient and public involvement can have a place within basic science.ConclusionsWhile patient and public involvement can be well-integrated within all types of research, policy makers should take account of tensions that must be navigated in balancing moral and methodological imperatives.

Quietist Salafism in France

AbstractHow do purist Salafist communities frame the issue of politics? Unlike Islamists and Jihadists who are known to display a reluctance towards political engagement, purist Salafists—especially those who live within a non-Muslim-majority country such as France—highlight that Islam has little to do with classical political activism. Consequently, a major issue that needs to be examined is how purist Salafists reconcile their desires to shape the society, through a process of public involvement that stops short of institutional engagement. The key question that is addressed in this piece is: to what extent is the notion of militant apoliticism relevant to describe this specific methods of public engagement?

GWAM—An Institutional Model to Address Watershed Impacts from Urbanization: Field Validation

With the realization of the limitations to top-down and bottom-up watershed management approaches in addressing issues associated with urbanization, a conceptual framework for a hybrid approach that tries to effectively integrate the advantages of the two approaches while overcoming their respective limitations, grass root watershed management model (GWAM), was proposed and presented. This paper presents the details of implementation and validation of GWAM at Shawsheen River watershed in Massachusetts, USA. An investigation on the major components of GWAM, a common platform to conduct the management, a partnership of two major stakeholder groups from government and non-governmental organizations, and a facilitation mechanisms were carried out in detail to gain the needed understanding on structure, process and function of a successful GWAM. Also the decision making process in addressing three major urban watershed issues; flooding, habitat and aquatic life impairment, and bacterial impairment, were examined through a set of cyclic steps. Based on the lessons learned, GWAM was enhanced as a general hybrid model. The most important challenge in sustaining GWAM was to keep differently motivated stakeholders together. As revealed in the Shawsheen watershed, science should play a key role in keeping differently motivated stakeholders together by providing needed facts, understandings, data, and knowledge. When scientifically sound solutions are vetted through a process of public involvement that supports appropriate regulatory actions, the most effective environmental decisions can be made.

The Roles and Activities of Neighborhood Organization Related with Public Involvement Process in Land Use Review System

The Roles and Activities of Neighborhood Organization Related with Public Involvement Process in Land Use Review System

Le salafisme quiétiste en France

How do purist Salafist communities frame the issue of politics? Known to display a reluctance towards political engagement and activism, unlike Islamists and Jihadists, purist Salafists, especially those who live within a non-Muslim-majority country such as France, highlight that Islam has nothing to do with classical political activism. Consequently, a major issue that needs to be examined is how purist Salafists reconcile their desires to preach and shape society through a process of public involvement and their efforts to refrain from engaging with political institutions. This article explores to what extent the notion of militant apoliticism is useful in describing this strategy of public engagement.