Public involvement and public engagement: An example of convergent evolution? Findings from a conceptual qualitative review of patient and public involvement, and public engagement, in health and scientific research.

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.

Hiatus resolution and linguistic diversity in Australian English.

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.

Understanding paramedic work in general practice in the UK: a rapid realist synthesis.

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.

Working with public contributors in Parkinson's research: What were the changes, benefits and learnings? A critical reflection from the researcher and public contributor perspective.

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.

World Cafés as a participatory approach to understanding research agendas in primary care with underserved communities: reflections, challenges and lessons learned.

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.

Evaluating automatic creaky voice detection methods.

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.

Do general practitioners working in or alongside the emergency department improve clinical outcomes or experience? A mixed-methods study.

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.

Perception of canine rabies among pupils under 15 years in Kwara State, North Central Nigeria.

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.

Ranging patterns and factors associated with movement in free-roaming domestic dogs in urban Malawi.

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.

Tackling Root Causes Upstream of Unhealthy Urban Development (TRUUD): Protocol of a five-year prevention research consortium.

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.

Attitudes and approaches to patient and public involvement across Europe: A systematic review.

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.

Pandemics, vulnerability, and prevention: time to fundamentally reassess how we value and communicate risk?: CITIES, HEALTH and COVID-19: Initial reflections and future challenges.

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.

Involving Patients in Health Economics Research: "The PACTS Principles".

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.

Factors associated with mobile phone ownership and potential use for rabies vaccination campaigns in southern Malawi.

BACKGROUND: Rabies is a fatal but preventable viral disease, which causes an estimated 59 000 human deaths globally every year. The vast majority of human rabies cases are attributable to bites from infected domestic dogs and consequently control of rabies in the dog population through mass vaccination campaigns is considered the most effective method of eliminating the disease. Achieving the WHO target of 70% vaccination coverage has proven challenging in low-resource settings such as Sub Saharan Africa, and lack of public awareness about rabies vaccination campaigns is a major barrier to their success. In this study we surveyed communities in three districts in Southern Malawi to assess the extent of and socio-economic factors associated with mobile phone ownership and explore the attitudes of communities towards the use of short message service (SMS) to inform them of upcoming rabies vaccination clinics. METHODS: This study was carried out between 1 October-3 December 2018 during the post-vaccination assessment of the annual dog rabies campaign in Blantyre, Zomba and Chiradzulu districts, Malawi. 1882 questionnaires were administered to households in 90 vaccination zones. The surveys gathered data on mobile phone ownership and use, and barriers to mobile phone access. A multivariable regression model was used to understand factors related to mobile phone ownership. RESULTS: Most survey respondents owned or had use of a mobile phone, however there was evidence of an inequality of access, with higher education level, living in Blantyre district and being male positively associated with mobile phone ownership. The principal barrier to mobile phone ownership was the cost of the phone itself. Basic feature phones were most common and few owned smartphones. SMS was commonly used and the main reason for not using SMS was illiteracy. Attitudes to receiving SMS reminders about future rabies vaccination campaigns were positive. CONCLUSIONS: The study showed a majority of those surveyed have the use of a mobile phone and most mobile phone owners indicated they would like to receive SMS messages about future rabies vaccination campaigns. This study provides insight into the feasibility of distributing information about rabies vaccination campaigns using mobile phones in Malawi.

"Let's Talk about Physical Activity": Understanding the Preferences of Under-Served Communities when Messaging Physical Activity Guidelines to the Public.

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.

'Mind the gaps': the accessibility and implementation of an effective depression relapse prevention programme in UK NHS services: learning from mindfulness-based cognitive therapy through a mixed-methods study.

OBJECTIVES: Mindfulness-based cognitive therapy (MBCT) is an evidence-based approach for people at risk of depressive relapse to support their long-term recovery. However, despite its inclusion in guidelines, there is an 'implementation cliff'. The study objective was to develop a better explanation of what facilitates MBCT implementation. SETTING: UK primary and secondary care mental health services. DESIGN, PARTICIPANTS AND METHODS: A national two-phase, multi-method qualitative study was conducted, which was conceptually underpinned by the Promoting Action on Research Implementation in Health Services framework. Phase I involved interviews with stakeholders from 40 service providers about current provision of MBCT. Phase II involved 10 purposively sampled case studies to obtain a more detailed understanding of MBCT implementation. Data were analysed using adapted framework analysis, refined through stakeholder consultation. RESULTS: Access to MBCT is variable across the UK services. Where available, services have adapted MBCT to fit their context by integrating it into their care pathways. Evidence was often important to implementation but took different forms: the NICE depression guideline, audits, evaluations, first person accounts, experiential taster sessions and pilots. These were used to build a platform from which to develop MBCT services. The most important aspect of facilitation was the central role of the MBCT implementers. These were generally self-designated individuals who 'championed' grass-roots implementation. Our explanatory framework mapped out a prototypical implementation journey, often over many years with a balance of bottom-up and top-down factors influencing the fit of MBCT into service pathways. 'Pivot points' in the implementation journey provided windows of either challenge or opportunity. CONCLUSIONS: This is one of the largest systematic studies of the implementation of a psychological therapy. While access to MBCT across the UK is improving, it remains patchy. The resultant explanatory framework about MBCT implementation provides a heuristic that informed an implementation resource.

Does a simple web-based intervention facilitate the articulation of patients' unvoiced agenda for a consultation with their diabetologists? A qualitative study.

OBJECTIVE: To explore whether a preconsultation web-based intervention enables patients with diabetes to articulate their agenda in a consultation in the hospital outpatient clinic with their diabetologist. METHODS AND DESIGN: A qualitative study embedded in a pragmatic pilot randomised controlled trial. SETTING: Two city outpatient departments in England. PARTICIPANTS: 25 patients attending a follow-up consultation and 6 diabetologists. INTERVENTION: The PACE-D, a web-based tool adapted for patients with diabetes to use before their consultation to generate an agenda of topics to discuss with their diabetologist. DATA COLLECTION: 25 participants had their consultation with their diabetologist audio-recorded: 12 in the control arm and 13 in the intervention arm; 12 of the latter also had their PACE-D intervention session and a consultation recorded. Semi-structured interviews with 6 diabetologists, and 12 patients (6 in the intervention group and 6 in the control group). ANALYSIS: Thematic discourse analysis undertaken with patient representatives trained in qualitative data analysis techniques. RESULTS: We identified four consultation types: diabetologist facilitated; patient identified; consultant facilitated and patient initiated and patient ignored. We also identified three critical aspects that explained the production and utilisation of the agenda form: existing consultative style; orientation to the use of the intervention and impact on the consultation. Where patients and diabetologists have a shared preference for a consultant-led or patient-led consultation, the intervention augments effective communication and shared decision making. However, where preferences diverge (eg, there is a mismatch in patients' and diabetologists' preferences and orientations), the intervention does not improve the potential for shared decision making. CONCLUSION: A simple web-based intervention facilitates the articulation of patients' unvoiced agenda for a consultation with their diabetologist, but only when pre-existing consultation styles and orientations already favour shared decision making. More needs to be done to translate patient empowerment in the consultation setting into genuine self-efficacy. TRIAL REGISTRATION NUMBER: ISRCTN75070242.

Challenges and opportunities for involving patients and the public in acute antimicrobial medicine development research: an interview study.

OBJECTIVES: To explore what approaches to patient and public involvement (PPI) in antimicrobial medicines development are currently being used, what the impacts of PPI are on antimicrobial medicines development and what the barriers are to its implementation. DESIGN: Interview study. SETTING: Antimicrobial medicines development research. PARTICIPANTS: Principal investigators known to have led studies involving PPI or expressed an interest in PPI. RESULTS: There is very little published work on PPI in antimicrobial research. Individual interviewees expressed scepticism about the contribution that PPI could make to different stages of the medicines development life cycle but collectively identified a range of potential benefits of PPI covering most stages of the medicines development process. CONCLUSIONS: A major issue in developing PPI in antimicrobial medicines development research will be in overcoming the view that, at best, PPI has only a marginal contribution to make in this area of research. The findings from this study, although mixed, suggest that well-designed PPI has an untapped potential to enhance antimicrobial research.