Patient and public involvement in the development of health services: Engagement of underserved populations in a quality improvement programme for inflammatory bowel disease using a community‐based participatory approach
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SUBMITTER: Sheldon E
PROVIDER: S-EPMC10909615 | biostudies-literature | 2024 Mar
REPOSITORIES: biostudies-literature
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Project description:ObjectiveWe compare 5 health informatics research projects that applied community-based participatory research (CBPR) approaches with the goal of extending existing CBPR principles to address issues specific to health informatics research.Materials and methodsWe conducted a cross-case analysis of 5 diverse case studies with 1 common element: integration of CBPR approaches into health informatics research. After reviewing publications and other case-related materials, all coauthors engaged in collaborative discussions focused on CBPR. Researchers mapped each case to an existing CBPR framework, examined each case individually for success factors and barriers, and identified common patterns across cases.ResultsBenefits of applying CBPR approaches to health informatics research across the cases included the following: developing more relevant research with wider impact, greater engagement with diverse populations, improved internal validity, more rapid translation of research into action, and the development of people. Challenges of applying CBPR to health informatics research included requirements to develop strong, sustainable academic-community partnerships and mismatches related to cultural and temporal factors. Several technology-related challenges, including needs to define ownership of technology outputs and to build technical capacity with community partners, also emerged from our analysis. Finally, we created several principles that extended an existing CBPR framework to specifically address health informatics research requirements.ConclusionsOur cross-case analysis yielded valuable insights regarding CBPR implementation in health informatics research and identified valuable lessons useful for future CBPR-based research. The benefits of applying CBPR approaches can be significant, particularly in engaging populations that are typically underserved by health care and in designing patient-facing technology.
| S-EPMC4713901 | biostudies-literature
Project description:BackgroundThe Dance and Health project aimed to promote public involvement in health research. Public involvement leads worked with project partner community groups, Aakash Odedra Dance Company and Moving Together, to develop a community engagement project with people living in low-socioeconomic areas/deprivation and diverse ethnic minority groups. Dance and Health included a weekly 60-min dance class and 30 min of facilitated health science discussion, that could either be a public involvement discussion for a research project, an activity about a particular biomedical research theme or ongoing discussions with a visiting researcher. The goal of this paper is to explore the impact of the Dance and Health project on the social capital of participants and provide key learnings on how to engage and build partnerships with people from underserved groups in health research contexts.MethodsQualitative interviews and focus groups were completed which explored participant and dance tutor experiences in community venues. Participants were aged between 22 and 90, most were female and were from Asian ethnic minority groups and White British groups living in deprived neighbourhoods in Leicester. Qualitative data were analysed using qualitative content analysis.ResultsThe responses to the Dance and Health project were positive across all the focus groups. Central themes identified were Feedback on the Project, Motivation to Exercise, Criticism of the NHS, Mental Wellbeing, Engagement in a Post Pandemic New Normal, Accessibility and Inclusivity, Empowerment and Building Social Capital.DiscussionThe focus groups evidenced that the project had broad impact. Participants expressed empowerment and ownership and described a range of social capital enrichment generated through the project including networks and friendships, access to the institutional resource of health science, and the opportunity to engage with a health and leisure activity that was valued and meaningful.
| S-EPMC11297768 | biostudies-literature
Project description:ObjectivesThe Royal College of Physician's (RCP) Future Hospital Programme (FHP) set out a blueprint for a radical new model of care that put patient experience centre stage. This paper reports on the results of an independent evaluation of the FHP and focuses on the role public patient involvement (PPI) played in these projects. The paper explores the perceptions and experiences of those involved in the FHP of how PPI was operationalised in this context, and develops an 'ex-post' programme theory of PPI in the FHP. We conclude by assessing the benefits and challenges of this work.SettingSecondary care. The FHP consisted of eight clinician-led healthcare improvement hospital development sites with two phases.ParticipantsDevelopment site clinical teams, patient representatives, the RCP's Patient and Carer Network, members of the FHP team, and fellows and members of the RCP.Design/methodsWe conducted an independent evaluation of the FHP using FHP documentation and data collected specifically for the evaluation: qualitative interviews, focus groups and a web-based survey.ResultsThe PPI initiatives set out to develop more patient-centred care and improve the patient experience. The mechanisms designed to meet these goals were (1) a programme of PPI in the development site's projects, (2) a better understanding of patient experience and (3) evaluation of patient experience.ConclusionThis evaluation of the FHP identifies some key elements that need to be considered when attempting to more closely integrate PPI and co-production in service re-design. The structure of FHP over two phases enabled learning from phase I to be incorporated into phase II. Having the PPI representatives closely involved, developing communities of practice, and the oversight and measuring activities acted as 'disciplinary structures' that contributed to embedding PPI in the FHP and kept the patient experience at the forefront of the improvement initiatives.
| S-EPMC6747633 | biostudies-literature
Project description:Engaging stakeholders is crucial for health promotion and programme evaluations; understanding how to best engage stakeholders is less clear, especially within Indigenous communities. The objectives of this thesis research were to use participatory methods to: (1) co-develop and evaluate a whiteboard video for use as a public health promotion tool in Rigolet, Nunatsiavut, and (2) develop and validate a framework for participatory evaluation of Inuit public health initiatives in Nunatsiavut, Labrador. Data collection tools included interactive workshops, community events, interviews, focus-group discussions and surveys. Results indicated the whiteboard video was an engaging and suitable medium for sharing public health messaging due to its contextually relevant elements. Participants identified 4 foundational evaluation framework components necessary to conduct appropriate evaluations, including: (1) community engagement, (2) collaborative evaluation development, (3) tailored evaluation data collection and (4) evaluation scope. This research illustrates stakeholder participation is critical to develop and evaluate contextually relevant public health initiatives in Nunatsiavut, Labrador and should be considered in other Indigenous communities.
| S-EPMC5533137 | biostudies-other
Project description:IntroductionDespite the advancements in Patient and Public Involvement and Engagement (PPIE), the voices of traditionally underserved groups are still poorly reflected in dementia research. This study aimed to report on a PPIE partnership between academics and members of the public from underserved communities to co-design Forward with Dementia-Social Care, a resource and information website supporting people receiving a dementia diagnosis.MethodsThe PPIE partnership was set up in four stages: 1-identifying communities that have been under-represented from PPIE in dementia research; 2-recruiting PPIE partners from these communities; 3-supporting PPIE partners to become confident to undertake their research roles and 4-undertaking research co-design activities in an equitable fashion.ResultsTo address under-representation from PPIE in dementia research we recruited seven PPIE partners from Black, Asian and other minority ethnic groups; lesbian, gay, bisexual, transgender, queer+ communities; remote/rural area; religious minorities and partners living with rare forms of dementia. The partners met regularly throughout the project to oversee new sections for the study website, refine existing content and promote the website within their communities.ConclusionStrategies can be used to successfully recruit and involve PPIE partners from underserved communities in co-design activities. These include networking with community leaders, developing terms of reference, setting out 'rules of engagement', and investing adequate resources and time for accessible and equitable involvement. These efforts facilitate the co-design of research outputs that reflect the diversity and complexity of UK contemporary society.Patient or public contributionThis study received support from seven members of the public with lived experience of dementia from communities that have been traditionally underserved in dementia research. These seven members of the public undertook the role of partners in the study. They all equally contributed to the study design, recruitment of participants, development and revision of topic guides for the interviews and development of the website. Three of these partners were also co-authors of this paper. On top of the activities shared with the other partners, they contributed to write independently of the academic team the section in this paper titled 'Partners' experiences, benefits and challenges of the partnership'. Further, they provided input in other sections of the paper on a par with the other (academic) co-authors.
| S-EPMC10877991 | biostudies-literature
Project description:BackgroundThe success of big data initiatives depends on public support. Public involvement and engagement could be a way of establishing public support for big data research.ObjectiveThis review aims to synthesize the evidence on public involvement and engagement in big data research.MethodsThis scoping review mapped the current evidence on public involvement and engagement activities in big data research. We searched 5 electronic databases, followed by additional manual searches of Google Scholar and gray literature. In total, 2 public contributors were involved at all stages of the review.ResultsA total of 53 papers were included in the scoping review. The review showed the ways in which the public could be involved and engaged in big data research. The papers discussed a broad range of involvement activities, who could be involved or engaged, and the importance of the context in which public involvement and engagement occur. The findings show how public involvement, engagement, and consultation could be delivered in big data research. Furthermore, the review provides examples of potential outcomes that were produced by involving and engaging the public in big data research.ConclusionsThis review provides an overview of the current evidence on public involvement and engagement in big data research. While the evidence is mostly derived from discussion papers, it is still valuable in illustrating how public involvement and engagement in big data research can be implemented and what outcomes they may yield. Further research and evaluation of public involvement and engagement in big data research are needed to better understand how to effectively involve and engage the public in big data research.International registered report identifier (irrid)RR2-https://doi.org/10.1136/bmjopen-2021-050167.
| S-EPMC11364952 | biostudies-literature
Project description:Despite a recent increase in community engagement in health initiatives during the COVID-19 pandemic, health inequalities and health inequities remain a serious problem for society, often affecting those in underserved communities the most. Often individualised incentives such as payment for vaccinations have been used to increase involvement in health initiatives but evidence suggests that these do not always work and can be ineffective. This paper addresses the real world problem of a lack of involvement of communities in health programmes and subsequent health inequalities. Using data from nine workshops with community members evaluating a large community health programme, we develop a socio-ecological model [SEM] of influences on community engagement in health programmes to identify holistic and systemic barriers and enablers to such engagement. To date SEM has not been used to develop solutions to improve community engagement in health programmes. Such an approach holds the potential to look beyond individualised conceptualisations of behaviour and instead consider a multitude of social and cultural influences. This knowledge can then be used to develop multi-faceted and multi-layered solutions to tackle the barriers to community engagement in health programmes. Our SEM highlights the overarching importance of the socio-cultural environment in influencing community engagement. Within the socio-cultural environment were factors such as trust, social support and community mindedness. We also found that other factors affecting community engagement fall within individual, economic, technological, political and physical environments. Such factors include engagement in community organisation governance and processes, access to and ability to use technology and access to safe outdoor spaces. We propose further testing our socioecological model in other communities.
| S-EPMC9512167 | biostudies-literature
Project description:Globally, human activities impose threats to nature and the provision of ecosystem services, such as pollination. In this context, ecological restoration provides opportunities to create managed landscapes that maximize biodiversity conservation and sustainable agriculture, e.g., via provision of pollination services. Managing pollination services and restoration opportunities requires the engagement of distinct stakeholders embedded in diverse social institutions. Nevertheless, frameworks toward sustainable agriculture often overlook how stakeholders interact and access power in social arenas. We present a perspective integrating pollination services, ecological restoration, and public engagement for biodiversity conservation and agricultural production. We highlight the importance of a comprehensive assessment of pollination services, restoration opportunities identification, and a public engagement strategy anchored in institutional analysis of the social arenas involved in restoration efforts. Our perspective can therefore guide the implementation of practices from local to country scales to enhance biodiversity conservation and sustainable agriculture.
| S-EPMC10407755 | biostudies-literature
Project description:Ferment: An outreach project using Nanopore 16S amplicon sequencing to investigate fermented foods
| PRJEB29723 | ENA
Project description:BackgroundPatient and public involvement and engagement is an important and expected component of health-related research activity in the UK. Specifically within the health research sphere, public engagement (usually defined as raising awareness of research) and patient involvement (usually defined as actively involving people in research) have traditionally been seen as separate but have much to gain from working together towards a common goal of better health outcomes for all.MethodsThis paper describes a unique approach taken by the Public Programmes Team: a small interdisciplinary team of public engagement specialists, with backgrounds in science, community development, public engagement and involvement, policy, ethics, communications, industry, museums and creative practice, embedded within translational research infrastructure and delivery in Manchester in the North West of England. We propose a new model of professional practice - a 'cycle' of engagement and involvement - innovating across the complementary fields of public engagement and patient involvement, and working inclusively and in partnership with people in health research. Further, our approach capitalises on strategic collaboration offering economies of scale and a joined up way of working. Our ambition is to boldly experiment, learn and reflect, responsibly and based on evidence and partnerships, using methods of engagement that address issues of social justice.ResultsHere, we report on preliminary case studies exemplifying the impact of our approach, and data relating to achievements and learning between April 2017 and March 2018. Informed by our findings, we propose that our approach has the potential to be replicated elsewhere.ConclusionsOur practice and the beginning of its evaluation lead us to believe that our way of working and model of professional practice - the 'cycle' of engagement and involvement - is effective in: addressing our vision of making health research relevant and inclusive for everyone; and embedding and joining up public involvement in a busy and fertile translational health research ecosystem.
| S-EPMC6802177 | biostudies-literature