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1.
Phonetica ; 81(2): 119-152, 2024 Apr 25.
Article in English | MEDLINE | ID: mdl-38406991

ABSTRACT

Vowel hiatus is typically resolved in Australian English through complementary strategies of liaison (j-gliding/w-gliding/linking-r) and glottalisation. Previous work suggests a change in progress towards increased use of glottalisation as an optimal hiatus-breaker, which creates syntagmatic contrast between adjacent vowels, particularly when the right-edge vowel is strong (i.e. at the foot boundary). Liaison continues to be used when right-edge vowels are weak, but glottalisation as a hiatus resolution strategy in general appears to be increasing and may be more common in speakers from non-English speaking backgrounds raising the question of whether exposure to linguistic diversity could be driving the change. We examine hiatus resolution in speakers from neighbourhoods that vary according to levels of language diversity. We elicited gliding and linking-r hiatus contexts to determine how prosodic strength of flanking vowels and speakers' exposure to linguistic diversity affect hiatus resolution. Results confirm that glottalisation occurs most frequently with strong right-edge vowels, and gliding/linking-r are more likely with weak right-edge vowels. However, strategies differ between gliding and linking-r contexts, suggesting differing implementation mechanisms. In addition, speakers from ethnolinguistically diverse areas produce increased glottalisation in all contexts supporting the idea that change to the hiatus resolution system may be driven by language contact.


Subject(s)
Multilingualism , Speech Perception , Humans , Phonetics , Speech Production Measurement , Australia , Language
2.
Health Expect ; 2023 Nov 21.
Article in English | MEDLINE | ID: mdl-37990485

ABSTRACT

INTRODUCTION: This paper provides a critical reflection from both the researcher and public contributor (PC) perspective on the benefits and the learnings taken from involving PCs in research related to Parkinson's. APPROACH TO PATIENT AND PUBLIC INVOLVEMENT (PPI): This paper reports on how PCs shaped the design and development of the PRIME-UK research programme study materials through input into information leaflets, consent forms and other patient-facing documents used across three studies within the PRIME-UK research programme. The PRIME-UK research programme is designed to improve the quality of life of people with Parkinson's and this project included three studies: a cross-sectional study, a randomised control trial and a qualitative study. We captured these impacts using Public Involvement Impact Logs, which provide a framework allowing researchers and PCs to report on the learnings, immediate outcomes and impacts from PPI. For this project, the impact logs enabled us to provide reflections from PCs and researchers on the process of involving 'the public' in Parkinson's research. FINDINGS: This paper builds on existing evidence of the range of benefits and challenges that emerge from working with patients and the public in Parkinson's research; this includes reflecting on the changes made to the study materials and benefits for the people involved. Four themes emerged from the reflections that were common to the researchers and PCs; these were the importance of providing a supportive environment; recognition of the benefit of the evaluation of the impact of PPI; acknowledgement that engagement of PPI can make a positive difference to the research process and that timely communication and the use of face-to-face communication, where available, is key. Furthermore, we demonstrate how impact logs provide a useful and straightforward tool for evaluating public involvement practices and supporting the feedback process. CONCLUSION: We offer key recommendations for involving patients and the public in Parkinson's research and suggest approaches that could be implemented to capture the impacts of public involvement. PUBLIC CONTRIBUTION: Public contributors (PCs) were involved in the design and development of the participant information leaflets, consent forms and other patient-facing documents used for studies within the PRIME-UK research programme. In addition, PCs evaluated their involvement using impact logs and co-authored this paper.

3.
J Acoust Soc Am ; 152(3): 1476, 2022 09.
Article in English | MEDLINE | ID: mdl-36182324

ABSTRACT

There is growing interest in research on the non-modal voice quality, creaky voice; however, its identification often relies on time-consuming manual annotation, leading to a recent focus on automatic creak detection methods. Various automatic methods have been proposed, which rely on varying types and combinations of acoustic cues for creak detection. In this paper, we compare the performance of three automatic tools, the AntiMode method, the Creak Detector algorithm, and the Roughness algorithm, against manual annotation of creak using data from 80 Australian English speakers. We explore the possibility that tools used in combination may yield more accurate creak detection than individual tools used alone. Based on method comparisons, we present options for researchers, including an "out-of-the-box" approach, which supports combining automatic tools, and propose additional steps to further improve creak detection. We found restricting analysis to sonorant segments significantly improves automatic creak detection, and tools performed consistently better on female speech than male speech. Findings support previous work showing detection may be optimised by performing a creak probability threshold sweep on a subset of data prior to applying the Creak Detector algorithm on new datasets. Results provide promising solutions for advancing efficient large-scale research on creaky voice.


Subject(s)
Speech Acoustics , Voice , Australia , Female , Humans , Male , Speech Production Measurement , Voice Quality
4.
Health Expect ; 21(6): 1111-1121, 2018 12.
Article in English | MEDLINE | ID: mdl-30073734

ABSTRACT

BACKGROUND: We conducted a pilot study of an intervention to facilitate patients' agenda setting in clinical consultations. The primary aim of the study was to test the feasibility of running the randomized controlled trial. A secondary objective was to assess the extent to which patient and public involvement (PPI) could contribute to the process of qualitative data analysis (QDA). AIMS: To describe a novel approach to including patient partners in QDA; to illustrate the kinds of contribution that patient partners made to QDA in this context; and to propose a characterization of a process by which patient involvement can contribute to knowledge production. METHODS: Six patient and public representatives were supported to contribute to data analysis via a range of modalities. During a series of QDA workshops, experienced research staff role-played consultations and interviews, and provided vignettes. Workshop data and PPI diaries were analysed using thematic discourse analysis. RESULTS: We characterized a process of thesis, antithesis and synthesis. This PPI group contributed to the rigour and validity of the study findings by challenging their own and the researchers' assumptions, and by testing the emerging hypotheses. By training PPI representatives to undertake qualitative data analysis, we transformed our understanding of doctor-patient consultations. CONCLUSIONS: This research required changes to our usual research practices but was in keeping with the objective of establishing meaningful patient involvement for a future definitive trial. This work was informed by concepts of critical humility, and a process of knowledge production enabled via the construction of a knowledge space.


Subject(s)
Data Analysis , Knowledge , Patient Participation , Research Design , Clinical Trials as Topic , Humans , Physician-Patient Relations , Pilot Projects , Qualitative Research , Research Personnel
5.
Health Expect ; 21(6): 1104-1110, 2018 12.
Article in English | MEDLINE | ID: mdl-30030880

ABSTRACT

BACKGROUND: People subject to the criminal justice system often have substantially different life-experiences from the general population. Patient and public involvement (PPI) of "seldom heard" groups provides valuable experiential knowledge, enhancing research. OBJECTIVE: To share our jointly developed techniques to ensure the meaningful engagement and contribution of people with lived experience of the criminal justice system (PWLECJS) in research, trial science, intervention theory development and dissemination. METHODS: Commitment to adequate financial resources, appropriate staff skills and adequate time were combined with previous learning. PWLECJS were approached through local community organizations. A group was established and met fortnightly for ten months in an unthreatening environment and had a rolling membership. Ongoing engagement was promoted by the group taking responsibility for the rules, interactive and accessible activities, feeding back tangible impacts, ongoing contact, building a work ethic, joint celebrations, sessions with individual academic researchers and pro-actively managed endings. RESULTS: The Peer Researchers contributed to study documents, training academic researchers, research data collection and analysis, intervention delivery and theory development and trial science. The Peer Researchers gained in confidence and an improved sense of self-worth. The Academic Researchers gained skills, knowledge and an increased openness to being challenged. DISCUSSION AND CONCLUSIONS: PWLECJS can be meaningful included in health research and intervention development. The key elements required are listed. Challenges included differences in priorities for timescales and dissemination, resource limitations and the use of Peer Researchers' names. Further research is required to understand what might be of relevance for other "seldom heard" groups.


Subject(s)
Cooperative Behavior , Criminals , Health Services Research , Patient Participation , Research Personnel , Humans , Mental Health , Peer Group
6.
Health Expect ; 21(1): 75-81, 2018 02.
Article in English | MEDLINE | ID: mdl-28752577

ABSTRACT

BACKGROUND: Patient and public involvement (PPI) is increasingly recognized as bringing a range of benefits to clinical and health services research. Recent systematic reviews have identified and synthesized many benefits (eg higher recruitment rates) and some costs (eg extra time need). Much of the literature focuses on PPI in long-term conditions rather than more acute health care in which the majority of microbiological research is undertaken. OBJECTIVES: The aim was to identify the extent, quality and impact of PPI in antimicrobial drug development research. Objectives were to identify any relevant reporting of PPI in antimicrobial research; appraise the quality of reporting on PPI using recognized PPI reporting and critical appraisal tools; and extract and synthesize data on the impact of PPI. SEARCH STRATEGY: A systematic review was undertaken with a search strategy based on four word groups (PPI, patients, antimicrobial drug development and outcomes). Eight online databases were searched. INCLUSION CRITERIA: English language publication, publication between 1996 and 2016 and studies describing PPI in antimicrobial drug development research. MAIN RESULTS: No studies were found through online searching that met the search strategy and inclusion criteria. One relevant protocol paper with a brief mention of PPI was identified through expert recommendation. Commentary papers recommending PPI were identified through website searching and expert opinion. DISCUSSION AND CONCLUSIONS: Despite strong policy guidance encouraging PPI at the international and national levels, and anecdotal accounts of PPI taking place, evidence for the extent, quality and impact of PPI in antimicrobial drug development research has not yet appeared in the peer-reviewed literature.


Subject(s)
Anti-Infective Agents , Drug Development , Health Services Research/methods , Patient Participation , Humans , Patient Participation/methods
7.
Health Expect ; 20(5): 826-835, 2017 10.
Article in English | MEDLINE | ID: mdl-28664563

ABSTRACT

BACKGROUND: There is a growing literature on evaluating aspects of patient and public involvement (PPI). We have suggested that at the core of successful PPI is the dynamic interaction of different forms of knowledge, notably lay and professional. We have developed a four-dimensional theoretical framework for understanding these interactions. AIM: We explore the practical utility of the theoretical framework as a tool for mapping and evaluating the experience of PPI in health services research. METHODS: We conducted three workshops with different PPI groups in which participants were invited to map their PPI experiences on wall charts representing the four dimensions of our framework. The language used to describe the four dimensions was modified to make it more accessible to lay audiences. Participants were given sticky notes to indicate their own positions on the different dimensions and to write explanatory comments if they wished. Participants' responses were then discussed and analysed as a group. RESULTS: The three groups were distinctive in their mapped responses suggesting different experiences in relation to having a strong or weak voice in their organization, having few or many ways of getting involved, addressing organizational or public concerns and believing that the organization was willing to change or not. DISCUSSION: The framework has practical utility for mapping and evaluating PPI interactions and is sensitive to differences in PPI experiences within and between different organizations. The workshops enabled participants to reflect collaboratively on their experiences with a view to improving PPI experiences and planning for the future.


Subject(s)
Community Participation/methods , Community Participation/psychology , Health Services Research/organization & administration , Caregivers , Chronic Disease , Group Processes , Humans , Knowledge , Mental Health , Patient Participation/methods , Patient Participation/psychology
8.
Health Expect ; 18(5): 661-75, 2015 Oct.
Article in English | MEDLINE | ID: mdl-24325553

ABSTRACT

BACKGROUND: Much has been written about public involvement (PI) in health and social care research, but underpinning values are rarely made explicit despite the potential for these to have significant influence on the practice and assessment of PI. OBJECTIVE: The narrative review reported here is part of a larger MRC-funded study which is producing a framework and related guidance on assessing the impact of PI in health and social care research. The review aimed to identify and characterize the range of values associated with PI that are central elements of the framework. METHODS: We undertook a review and narrative synthesis of diverse literatures of PI in health and social care research, including twenty existing reviews and twenty-four chapters in sixteen textbooks. RESULTS: Three overarching value systems were identified, each containing five value clusters. (i) A system concerned with ethical and/or political issues including value clusters associated with empowerment; change/action; accountability/transparency; rights; and ethics (normative values). (ii). A system concerned with the consequences of public involvement in research including value clusters associated with effectiveness; quality/relevance; validity/reliability; representativeness/objectivity/generalizability; and evidence (substantive values). (iii) A system concerned with the conduct of public involvement in including value clusters associated with Partnership/equality; respect/trust; openness and honesty; independence; and clarity (process values). CONCLUSION: Our review identified three systems associated with PI in health and social care research focused on normative, substantive and process values. The findings suggest that research teams should consider and make explicit the values they attach to PI in research and discuss ways in which potential tensions may be managed in order to maximize the benefits of PI for researchers, lay experts and the research.


Subject(s)
Community Participation , Health Services Research , Social Values , Humans , Narration , Quality Indicators, Health Care
10.
PEC Innov ; 4: 100281, 2024 Dec.
Article in English | MEDLINE | ID: mdl-38638421

ABSTRACT

Objective: Patient and public involvement (PPI) in health research is now well-established, whilst science, technology, engineering and mathematics (STEM) research has shifted from a focus on science communication alone to public engagement (PE) within its research processes. Despite frequently drawing on similar theoretical influences, and practical motivations, there is often a lack of dialogue between such settings meaning shared learning, practice and evidence from these two sectors are rarely pooled. Methods: In this article, we examine findings from a conceptual review of literature gathered between 1996 and 2019. Results: Analyzing 142 peer-reviewed articles, we ascertain shared definitions and concepts in patient and public involvement and public engagement, identifying key differences and similarities. Conclusion: The literature we review supports the notion that, in terms of origins, there are two distinct traditions, one based in science communication and one based in what we describe as public involvement in shared decision-making. Innovation: We find evidence that the two traditions are converging but our work also calls for the need for further conversations between these two settings, which are exploring intersecting issues but from parallel pathways.

11.
BMC Prim Care ; 25(1): 32, 2024 01 23.
Article in English | MEDLINE | ID: mdl-38262987

ABSTRACT

BACKGROUND: General practice in the UK is under substantial pressure and practices are increasingly including paramedics as part of their workforce. Little is known about how different models of paramedic working may affect successful implementation of the role, as viewed from patient, clinician and system perspectives. This realist synthesis developed theories about 'models of paramedic working in general practice' in different UK contexts to understand their impact. METHODS: The rapid realist synthesis comprised data from: (1) empirical and grey literature searches; (2) semi-structured realist interviews with system leaders involved with the implementation of the role; and (3) a stakeholder event with healthcare professionals and the public, to develop initial programme theories that can be tested in future work. Sources were analysed using a realist approach that explored the data for novel or causal insights to generate initial programme theories. RESULTS: Empirical sources (n = 32), grey sources (n = 95), transcripts from system leader interviews (n = 7) and audio summaries from the stakeholder event (n = 22 participants) were synthesised into a single narrative document. The findings confirmed the presence of a wide variety of models of paramedic working in UK general practice. The perceived success of models was influenced by the extent to which the paramedic service was mature and embedded in practice, and according to four theory areas: (1) Primary care staff understanding and acceptance of the paramedic role; (2) Paramedic induction process, including access to training, supervision and development opportunities; (3) Patient understanding and acceptance of the role; (4) Variations in paramedic employment models. CONCLUSIONS: Variability in how the paramedic role is operating and embedding into general practice across the UK affects the success of the role. These findings provide a theoretical foundation for future research to investigate various 'models of paramedic working' in different contexts.


Subject(s)
Emergency Medical Technicians , General Practice , Humans , Paramedics , Family Practice , United Kingdom
12.
Res Involv Engagem ; 9(1): 101, 2023 Oct 28.
Article in English | MEDLINE | ID: mdl-37898808

ABSTRACT

BACKGROUND: Certain communities are underserved by research, resulting in lower inclusion rates, under researched health issues and a lack of attention to how different communities respond to health interventions. Minoritised ethnic groups are often underserved by research and services. They experience health inequalities and face significant barriers to accessing health services. It is recognised that new approaches are needed to reach underserved communities and make research more relevant. The purpose of this work was to utilise World Cafés, a participatory method, to explore research agendas with diverse communities. METHODS: Two World Cafés were conducted as research agenda setting activities with individuals from minoritised ethnic communities in Bristol, UK. World Café 1 explored Black and Asian women's perspectives about supporting mental health. World Café 2 with men from the Somali community, focused on prostate cancer. Community members co-developed the focus and questions of each World Café and were also instrumental in recruiting individuals to the sessions and facilitating discussions, including translation. Audio and written records were made of the discussions and from these key issues about each topic were identified, and a visual representation of the discussion was also generated. These were shared with participants to check for accuracy. RESULTS: Community members identified a range of issues that are important to them in relation to mental health and prostate cancer, including barriers to help seeking and accessing primary and secondary care, ideas for service improvements and a need for health information that is accessible and culturally relevant. CONCLUSIONS: World Cafés are a flexible method that can be successfully adapted for research agenda setting with individuals from minoritised ethnic communities. The role of community members in co-developing the focus of sessions, recruiting community members and co-facilitating sessions is crucial to this success. The discussions at both World Cafés provided a rich insight into the experiences of participants in relation to the topics mental health and prostate cancer and identified issues that are important to these communities that will be followed-up with communities, researchers and clinicians to co-develop research and service improvement strategies.


People from minoritised ethnic groupsgroups can have difficulty getting health care. They may also be left out of health research. There is a need to include a more diverse group of people in health research. World Cafés are an accessible way to listen to people by getting them to talk to each other about different questions and topics.We did this work to see if World Cafés are a helpful way to talk to people from minoritised ethnic groups about health. We wanted to learn what things are important to people around mental health and prostate cancer. We also wanted to see if designing and running the World Café with people from the same communities as people taking part in the World Cafés is a good way to do this. We worked together with people from racial and ethnic minorities to: Choose questions and topics, Ask people to take part Get people talking and write down what was said We learned that planning and running World Cafés with people from the same communities as the people taking part was very helpful. The people taking part in the World Cafés said that it can be difficult to get help and information about their health. They gave lots of reasons for this. They also had ideas to improve healthcare.Now that we have this information, we will work with the people who took part in and helped run the World Cafés, along with, doctors and researchers to take their ideas for improvements forwards.

13.
PLoS Negl Trop Dis ; 16(8): e0010614, 2022 08.
Article in English | MEDLINE | ID: mdl-35921319

ABSTRACT

Rabies is an endemic, highly fatal, and vaccine-preventable disease with severe socio-economic implications. Most (99%) human rabies cases are transmitted through dog bites. Children under 15 years account for 40% of all dog bite victims and 35-50% of all rabies deaths. Rabies awareness among this vulnerable group is critical to rabies prevention. However, there is a paucity of data on rabies awareness among pupils under 15. Hence, this study assessed the awareness and attitude of pupils under 15 years towards canine rabies in Kwara state in Nigeria. The study was conducted as a cross-sectional survey of 1,388 pupils across the state using a structured questionnaire that was administered as a one-on-one interview using the Open Data Kit on Android phones in December 2019. Of the 1388 pupils included in this study, only 21.7% (n = 301) of them were aware of rabies. The mean rabies score was 1.7±0.8 and only 29.2% (n = 88/301) of the pupils had adequate knowledge of canine rabies. The dog ownership rate was 18.7% (n = 259) with an average of 1.93 dogs per household. Approximately 5% (n = 66) of the pupils have been previously bitten by a dog. One-third of the dog bite victims (35%, n = 23/66) were managed and treated at home and only 12% (n = 8/66) were treated in a health facility. The result of the multivariable logistic regression showed that students aged between 13-15 years were more likely (OR: 1.93; 95% CI: 0.72-3.01; p < 0.001) to have adequate knowledge of rabies than the younger pupils. Similarly, pupils that have dogs in their households (OR: 2.09; 95%CI: 1.49-2.75; p < 0.001) and those that reside in Kwara South (OR:1.78 95% CI:1.29, 2.44; p < 0.001) were more likely to be aware and have adequate knowledge of canine rabies respectively. Finally, Pupils from non-dog-owning households were more likely (OR:2.2; 95% CI: 1.45, 4.42; p < 0.001) to have been bitten by dogs than those from dog-owning households. The awareness and attitude of pupils under 15 to canine rabies was poor. We advocate the introduction of rabies lessons into the school curriculum in Kwara State to reduce the incidence of dog bites and prevent dog-mediated human rabies.


Subject(s)
Bites and Stings , Dog Diseases , Rabies Vaccines , Rabies , Adolescent , Animals , Bites and Stings/epidemiology , Child , Cross-Sectional Studies , Dog Diseases/epidemiology , Dog Diseases/prevention & control , Dogs , Health Knowledge, Attitudes, Practice , Humans , Nigeria/epidemiology , Perception , Rabies/epidemiology , Rabies/prevention & control , Rabies/veterinary , Surveys and Questionnaires
14.
BMJ Open ; 12(9): e063495, 2022 09 20.
Article in English | MEDLINE | ID: mdl-36127084

ABSTRACT

OBJECTIVES: To examine the effect of general practitioners (GPs) working in or alongside the emergency department (GPED) on patient outcomes and experience, and the associated impacts of implementation on the workforce. DESIGN: Mixed-methods study: interviews with service leaders and NHS managers; in-depth case studies (n=10) and retrospective observational analysis of routinely collected national data. We used normalisation process theory to map our findings to the theory's four main constructs of coherence, cognitive participation, collective action and reflexive monitoring. SETTING AND PARTICIPANTS: Data were collected from 64 EDs in England. Case site data included: non-participant observation of 142 clinical encounters; 467 semistructured interviews with policy-makers, service leaders, clinical staff, patients and carers. Retrospective observational analysis used routinely collected Hospital Episode Statistics alongside information on GPED service hours from 40 hospitals for which complete data were available. RESULTS: There was disagreement at individual, stakeholder and organisational levels regarding the purpose and potential impact of GPED (coherence). Participants criticised policy development and implementation, and staff engagement was hindered by tensions between ED and GP staff (cognitive participation). Patient 'streaming' processes, staffing and resource constraints influenced whether GPED became embedded in routine practice. Concerns that GPED may increase ED attendance influenced staff views. Our quantitative analysis showed no detectable impact on attendance (collective action). Stakeholders disagreed whether GPED was successful, due to variations in GPED model, site-specific patient mix and governance arrangements. Following statistical adjustment for multiple testing, we found no impact on: ED reattendances within 7 days, patients discharged within 4 hours of arrival, patients leaving the ED without being seen; inpatient admissions; non-urgent ED attendances and 30-day mortality (reflexive monitoring). CONCLUSIONS: We found a high degree of variability between hospital sites, but no overall evidence that GPED increases the efficient operation of EDs or improves clinical outcomes, patient or staff experience. TRIAL REGISTRATION NUMBER: ISCRTN5178022.


Subject(s)
General Practitioners , Emergency Service, Hospital , Hospitalization , Humans , Inpatients , Retrospective Studies
15.
Ecol Evol ; 12(1): e8498, 2022 Jan.
Article in English | MEDLINE | ID: mdl-35127025

ABSTRACT

Rabies is a neglected zoonotic disease that causes around 59,000 deaths per year globally. In Africa, rabies virus is mostly maintained in populations of free-roaming domestic dogs (FRDD) that are predominantly owned. Characterizing the roaming behavior of FRDD can provide relevant information to understand disease spread and inform prevention and control interventions. To estimate the home range (HR) of FRDD and identify predictors of HR size, we studied 168 dogs in seven different areas of Blantyre city, Malawi, tracking them with GPS collars for 1-4 days. The median core HR (HR50) of FRDD in Blantyre city was 0.2 ha (range: 0.08-3.95), while the median extended HR (HR95) was 2.14 ha (range: 0.52-23.19). Multivariable linear regression models were built to identify predictors of HR size. Males presented larger HR95 than females. Dogs living in houses with a higher number of adults had smaller HR95, while those living in houses with higher number of children had larger HR95. Animals that received products of animal origin in their diets had larger HR95, and only in the case of females, animals living in low-income areas had larger HR50 and HR95. In contrast, whether male dogs were castrated or not was not found to be associated with HR size. The results of this study may help inform rabies control and prevention interventions in Blantyre city, such as designing risk-based surveillance activities or rabies vaccination campaigns targeting certain FRDD subpopulations. Our findings can also be used in rabies awareness campaigns, particularly to illustrate the close relationship between children and their dogs.

16.
Health Soc Care Community ; 29(1): 18-27, 2021 01.
Article in English | MEDLINE | ID: mdl-32705752

ABSTRACT

The Innovative Medicines Initiative (IMI) is making great strides in promoting patient and public involvement (PPI) in health research across Europe, supporting patient organisations to be involved in the projects that it funds. Despite this, the literature around PPI in health services and research originating from European countries appears less than from the United Kingdom (UK), where PPI is well established. Therefore, we conducted a systematic review to explore the attitudes and approaches to PPI across Europe. Eight scientific databases were systematically searched and data extracted. Data quality was assessed using a checklist based on the Guidance for Reporting Involvement of Patients and the Public (GRIPP2) (Staniszewska et al., Research, Involvement and Engagement, 3, 13, 2017) and the critical appraisal guidelines developed by Wright et al. (Health Expectations, 13, 359, 2010). We included all studies reporting PPI activity in both public and private health services and research institutions in the World Health Organization European region, excluding the UK, published in the English language from 1996 to 2018. Forty studies in total were included in the analysis. The studies imply a growing interest and support for the idea of PPI in health services and, to a lesser extent, in health research. There seems to be a convergence of conceptualisations of PPI across Europe, with internationally significant areas of innovative work taking place in countries such as the Netherlands and the Scandinavian countries. However, the implementation of PPI is highly uneven, and PPI is not yet firmly embedded or adequately formalised in European healthcare systems and research, possibly due to a lack of infrastructure, guidance and support. In order to try to get a better understanding of what is happening on the ground, we are carrying out a survey with potential follow-up interviews as the next part of this research project. This work is currently on hold due to the COVID-19 pandemic.


Subject(s)
Decision Making , Patient Participation/statistics & numerical data , Patient Satisfaction/statistics & numerical data , COVID-19 , Checklist , Europe , Humans , Patient-Centered Care/methods
17.
Patient ; 14(4): 429-434, 2021 07.
Article in English | MEDLINE | ID: mdl-33043427

ABSTRACT

Discussion of public and patient involvement (PPI) in health economics (HE) research is growing. There is much literature on PPI principles and standards, but little specifically regarding involving patients in HE research. Here, we outline "PACTS", a set of principles, developed with a PPI group, for considering patient involvement in HE research. Planning: Involvement is best built in to research plans from the outset. This includes setting specific goals for involvement activities, and clearly communicating the background and purpose of involvement. Approach selection: We describe two main approaches to involvement-discussion-based and task-based. Discussion-based approaches are useful for generating broad insights and revealing "unknown unknowns". Task-based approaches offer a more focused means of shedding light on "known unknowns". Continuous involvement: Involving patients throughout the research process and across a range of projects helps build expertise for patients and insight for HE researchers. Team building: Meaningful involvement creates a shared sense of ownership of the research and, over time, helps to develop a team ethos, enhancing the positive impacts of involvement. Sensitivity: HE research can be perceived as technical and impersonal. Addressing this requires sensitivity, clarity, and an honest and open approach. There is increased recognition that patient contributors are experts at providing a "lived experience" perspective, in the way that clinicians are experts at providing an overview of conditions and HEs are experts in the methodology of their discipline. We hope these "PACTS Principles" complement existing PPI approaches and provide a useful foundation for health economists considering patient involvement.


Subject(s)
Patient Participation , Research Personnel , Humans
18.
Wellcome Open Res ; 6: 30, 2021.
Article in English | MEDLINE | ID: mdl-35919506

ABSTRACT

Poor quality urban environments substantially increase non-communicable disease. Responsibility for associated decision-making is dispersed across multiple agents and systems: fast growing urban authorities are the primary gatekeepers of new development and change in the UK, yet the driving forces are remote private sector interests supported by a political economy focused on short-termism and consumption-based growth. Economic valuation of externalities is widely thought to be fundamental, yet evidence on how to value and integrate it into urban development decision-making is limited, and it forms only a part of the decision-making landscape. Researchers must find new ways of integrating socio-environmental costs at numerous key leverage points across multiple complex systems. This mixed-methods study comprises of six highly integrated work packages. It aims to develop and test a multi-action intervention in two urban areas: one on large-scale mixed-use development, the other on major transport. The core intervention is the co-production with key stakeholders through interviews, workshops, and participatory action research, of three areas of evidence: economic valuations of changed health outcomes; community-led media on health inequalities; and routes to potential impact mapped through co-production with key decision-makers, advisors and the lay public. This will be achieved by: mapping system of actors and processes involved in each case study; developing, testing and refining the combined intervention; evaluating the extent to which policy and practice changes amongst our target users, and the likelihood of impact on non-communicable diseases (NCDs) downstream. The integration of such diverse disciplines and sectors presents multiple practical/operational issues. The programme is testing new approaches to research, notably with regards practitioner-researcher integration and transdisciplinary research co-leadership. Other critical risks relate to urban development timescales, uncertainties in upstream-downstream causality, and the demonstration of impact.

19.
Cities Health ; 5(Suppl): S93-S96, 2021.
Article in English | MEDLINE | ID: mdl-38013679

ABSTRACT

For over a decade, pandemics have been on the UK National Risk Register as both the likeliest and most severe of threats. Non-infectious 'lifestyle' diseases were already crippling our healthcare services and our economy. COVID-19 has exposed two critical vulnerabilities: firstly, the UK's failure to adequately assess and communicate the severity of non-communicable disease; secondly, the health inequalities across our society, due not least to the poor quality of our urban environments. This suggests a potentially disastrous lack of preventative action and risk management more generally, notably with regards to the existential risks from the climate and ecological crises.

20.
Article in English | MEDLINE | ID: mdl-32316591

ABSTRACT

Despite many countries having physical activity guidelines, there have been few concerted efforts to mobilize this information to the public. The aim of this study was to understand the preferences of under-served community groups about how the benefits of physical activity, and associated guidelines, can be better communicated to the public. Participatory workshops, co-developed between researchers, a local charity, and a community artist, were used to gather data from four groups in Bristol, UK: young people (n = 17); adults (n = 11); older adults (n = 5); and Somali women (n = 15). Workshop content was structured around the study aims. The community artist and/or the local charity delivered the workshops, with researchers gathering data via observation, photos, and audio-recordings, which were analysed using the framework method. All four groups noted that the benefits of physical activity should be included within any communications efforts, though not restricted to health-related benefits. Language used should be simple and jargon-free; terms such as "sedentary", "vigorous" and "intensity" were deemed inaccessible, however all groups liked the message "some is good, more is better". Views about preferred mechanisms, and messenger, for delivering physical activity messages varied both between, and within, groups. Recommendations for those working in physical activity communications, research, and policy are provided.


Subject(s)
Communication , Exercise , Health Promotion/methods , Adolescent , Adult , Aged , Aged, 80 and over , Child , Consumer Behavior , Female , Humans , Language , Male , Middle Aged , United Kingdom , Young Adult
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