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ABSTRACT Background Cervical screening for high‐risk Human Papillomavirus subtypes is offered to those eligible in the UK via the NHS cervical screening programmes. However, uptake of cervical screening continues to remain below the national target of 80%. Groups less likely to participate include people from low socioeconomic groups, ethnic minority backgrounds, younger/older age and/or LGBTQ group identity. The cervical screening‐eligible population could soon, for the first time in the UK, have a choice of mode between clinician taken or self‐sampling. Aims To understand information and decision‐support needs of diverse cervical screening‐eligible individuals when presented with a choice of cervical screening mode and develop recommendations for a communication strategy to support informed decision‐making. Methods Qualitative co‐production explored communication preferences and decision‐support needs in a diverse sample of cervical screening‐eligible individuals using semi‐structured interviews with individuals eligible for cervical screening (n = 30) and stakeholders (n = 23). Interviews were transcribed, thematically analysed and mapped to behavioural and decision‐making theories to inform a communication strategy for offering choice in cervical screening mode in the UK. Results Four main themes across both participant groups were identified: misunderstanding of clinician screening, attitudes towards choice, communication launch preferences and decision‐support needs. Logic models to inform a communication strategy in preparation for the future launch of choice in cervical screening mode in the UK were developed. Implications The communication launch strategy can inform interventions to support informed decision‐making if HPV self‐sampling is incorporated into UK cervical screening programmes. Patient and Public Contribution Two public partners were involved in the study from inception to completion. They advised on recruitment, participant facing documents and were involved in analysis.

Background Proven benefits of Shared Decision Making (SDM) include improved patient knowledge, involvement and confidence in making decisions. Although widely advocated in policy, SDM is still not widely implemented in practice. A common patient‐reported barrier is feeling that “doctor knows best”; thus, patients often defer decisions to the clinician. Objective To examine the nature of the discourse when patients ask clinicians for a treatment recommendation during consultations when treatment decisions are being shared and to examine clinicians’ strategies used in response. Design, Setting and Participants Theme‐orientated discourse analysis was performed on eight audio‐recordings of breast cancer diagnostic consultations in which patients or their partners attempted to defer treatment decisions to the clinician. Clinicians were trained in SDM. Results Tension was evident in a number of consultations when treatment recommendations were requested. Clinicians responded to recommendation requests by explaining why the decision was being shared (personal nature of the decision, individual preferences and equivalent survival outcomes of treatment options). There was only one instance where a clinician gave a treatment recommendation. Discussion and Conclusions Strategies for clinicians to facilitate SDM when patients seem to defer decisional responsibility include being clear about why the decision is being shared, acknowledging that this is difficult and making patients feel supported. When patients seek guidance, clinicians can provide a recommendation if grounded in an understanding of the patient's values.

The principles of shared decision making are well documented but there is a lack of guidance about how to accomplish the approach in routine clinical practice. Our aim here is to translate existing conceptual descriptions into a three-step model that is practical, easy to remember, and can act as a guide to skill development. Achieving shared decision making depends on building a good relationship in the clinical encounter so that information is shared and patients are supported to deliberate and express their preferences and views during the decision making process. To accomplish these tasks, we propose a model of how to do shared decision making that is based on choice, option and decision talk . The model has three steps: a) introducing choice, b) describing options, often by integrating the use of patient decision support, and c) helping patients explore preferences and make decisions. This model rests on supporting a process of deliberation, and on understanding that decisions should be influenced by exploring and respecting “what matters most” to patients as individuals, and that this exploration in turn depends on them developing informed preferences.

The Wales COVID-19 Evidence Centre (WCEC) was established from 2021-23 to ensure that the latest coronavirus (COVID-19) relevant research evidence was readily available to inform health and social care policy and practice decision-makers. Although decisions need to be evidence-based, ensuring that accessible and relevant research evidence is available to decision-makers is challenging, especially in a rapidly evolving pandemic environment when timeframes for decision-making are days or weeks rather than months or years. We set up knowledge mobilisation processes to bridge the gap between evidence review and informing decisions, making sure that the right information reaches the right people at the right time. To describe the knowledge mobilisation processes used by the WCEC, evaluate the impact of the WCEC rapid evidence reviews, and share lessons learned. Our knowledge mobilisation methods were flexible and tailored to meet stakeholders' needs. They included stakeholder co-production in our rapid evidence review processes, stakeholder-informed and participatory knowledge mobilisation, wider dissemination of outputs and associated activities including public engagement, capacity building and sharing of methodologies. Feedback on processes and evidence of impact was collected via stakeholder engagement and a stakeholder survey. Findings indicate that knowledge mobilisation processes successfully enabled use of the WCEC's rapid evidence reviews to inform policy and practice decision-makers during the COVID-19 pandemic in Wales. Realising actual public and patient benefit from this 'pathway to impact' work will take further time and resources. The WCEC knowledge mobilisation processes successfully supported co-production and use of rapid evidence review findings by scientific advisors and policy and practice decision-makers during the COVID-19 pandemic. Identified barriers and facilitators are of potential relevance to wider evidence initiatives, for setting up similar Centres during crisis situations, and supporting future evidence-based policy and practice decision-making.

Background Coeliac disease requires strict adherence to a gluten-free diet to prevent health complications. While gluten-free foods (GFF) are traditionally available on the National Health Service (NHS) prescriptions, the cost and limited product range have prompted consideration of alternatives. Wales is exploring replacing prescriptions with a subsidy card scheme, piloted and implemented by the Hywel Dda University Health Board. This study explores potential service users’ views on the advantages and challenges of transitioning to a subsidy card scheme, as well as their priorities as individuals with coeliac disease. Methods A qualitative study was conducted with 23 participants from six Welsh health boards where the subsidy card scheme has not been implemented. Participants included individuals eligible for GFF prescriptions and carers of eligible individuals. Recruitment was via social media and Coeliac UK’s Wales mailing list, with purposive sampling to ensure diversity. Data were collected through semi-structured interviews (April-July 2024) and analysed thematically using NVivo software. Results Four themes and 20 subthemes were identified. Participants viewed the subsidy card as offering greater choice, autonomy in dietary management, and convenience compared to prescriptions, with the potential to better align with everyday shopping habits. Concerns centred on the card’s monetary value amid inflation, risks of technical or top-up failures, misuse, and limited retailer participation in rural areas. Sixteen participants expressed a clear interest in switching to the subsidy card system, six were ambivalent, and one expressed no interest. Participants also highlighted six key priorities that they felt were essential to improving GFF access and ensuring better support for people with coeliac disease. These priorities included: ease of access, variety and freedom of choice, a tasty and healthy diet, consistency, cost, and better awareness and education of coeliac disease. Conclusions The subsidy card model presents a promising, cost-effective, and patient-centred alternative to prescriptions, offering greater dietary autonomy and alignment with consumer practices. However, its success will depend on ensuring equity across geographic areas, addressing infrastructure and retailer participation, safeguarding nutritional adequacy, and maintaining prescription access during transition. Careful implementation will be essential to support diverse patient needs and optimise the scheme’s success.

Background Involving and engaging the public in scientific research and higher education is slowly becoming the norm for academic institutions in the United Kingdom and elsewhere. Driven by a wide range of stakeholders including regulators, funders, research policymakers and charities public involvement and public engagement are increasingly seen as essential in delivering open and transparent activity that is relevant and positively impacts on our society. It is obvious that any activities involving and engaging members of the public should be conducted safely and ethically. However, it is not clear whether conducting activities ethically means they require ethical approval from a research ethics committee. Main body Although there is some guidance available from government organisations (e.g. the UK Health Research Authority) to suggest ethical approval is not required for such activities, requests from funders and publishers to have ethical approval in place is commonplace in the authors’ experience. We explore this using case studies from our own institution. Conclusion We conclude that any public-facing activity with the purpose to systemically investigate knowledge, attitudes and experiences of members of the public as research and as human participants requires prior approval from an ethics committee. In contrast, engaging and involving members of the public and drawing on lived experience to inform aspects of research and teaching does not. However, lack of clarity around this distinction often results in the academic community seeking ethical approval ‘just in case’, leading to wasted time and resources and erecting unnecessary barriers for public involvement and public engagement. Instead, ethical issues and risks should be appropriately considered and mitigated by the relevant staff within their professional roles, be it academic or a professional service. Often this can involve following published guidelines and conducting an activity risk assessment, or similar. Moving forward, it is critical that academic funders and publishers acknowledge the distinction and agree on an accepted approach to avoid further exacerbating the problem. Plain English summary Involving and engaging members of the public is recognised best practice in university research and teaching. Involvement and engagement activities (for instance, working with the public to design a research study) continue to increase in priority and are an important part of an academic’s role. However, there is often confusion amongst researchers and educators around whether involving the public in these activities requires prior ethical approval, similar to what would be the case when inviting members of the public to participate in a clinical research study, or to donate samples such as blood for experiments. As an example, sometimes researchers are asked for ethical approval by scientific journals when trying to publish the findings from their public involvement and engagement work, when in fact this is not needed. The ongoing uncertainty about the difference between actual research on one hand and public involvement and engagement on the other hand wastes precious time and resources, and is a barrier for scientists to working with the public. We have developed guidance for academic staff on when ethical approval is and is not required, using examples from our own experience. We wrote this article to bring awareness to this problem; share our views with the wider academic community; encourage discussion around the problem and possible solutions; and ultimately contribute to educating on when research ethics approval is needed, and when not.

To describe the development, validation and inter-rater reliability of an instrument to measure the quality of patient decision support technologies (decision aids). Scale development study, involving construct, item and scale development, validation and reliability testing. There has been increasing use of decision support technologies--adjuncts to the discussions clinicians have with patients about difficult decisions. A global interest in developing these interventions exists among both for-profit and not-for-profit organisations. It is therefore essential to have internationally accepted standards to assess the quality of their development, process, content, potential bias and method of field testing and evaluation. Scale development study, involving construct, item and scale development, validation and reliability testing. Twenty-five researcher-members of the International Patient Decision Aid Standards Collaboration worked together to develop the instrument (IPDASi). In the fourth Stage (reliability study), eight raters assessed thirty randomly selected decision support technologies. IPDASi measures quality in 10 dimensions, using 47 items, and provides an overall quality score (scaled from 0 to 100) for each intervention. Overall IPDASi scores ranged from 33 to 82 across the decision support technologies sampled (n = 30), enabling discrimination. The inter-rater intraclass correlation for the overall quality score was 0.80. Correlations of dimension scores with the overall score were all positive (0.31 to 0.68). Cronbach's alpha values for the 8 raters ranged from 0.72 to 0.93. Cronbach's alphas based on the dimension means ranged from 0.50 to 0.81, indicating that the dimensions, although well correlated, measure different aspects of decision support technology quality. A short version (19 items) was also developed that had very similar mean scores to IPDASi and high correlation between short score and overall score 0.87 (CI 0.79 to 0.92). This work demonstrates that IPDASi has the ability to assess the quality of decision support technologies. The existing IPDASi provides an assessment of the quality of a DST's components and will be used as a tool to provide formative advice to DSTs developers and summative assessments for those who want to compare their tools against an existing benchmark.

Background The COVID-19 pandemic resulted in major disruption to healthcare delivery worldwide causing medical services to adapt their standard practices. Learning how these adaptations result in unintended patient harm is essential to mitigate against future incidents. Incident reporting and learning system data can be used to identify areas to improve patient safety. A classification system is required to make sense of such data to identify learning and priorities for further in-depth investigation. The Patient Safety (PISA) classification system was created for this purpose, but it is not known if classification systems are sufficient to capture novel safety concepts arising from crises like the pandemic. We aimed to review the application of the PISA classification system during the COVID-19 pandemic to appraise whether modifications were required to maintain its meaningful use for the pandemic context. Methods We conducted a mixed-methods study integrating two phases in an exploratory, sequential design. This included a comparative secondary analysis of patient safety incident reports from two studies conducted during the first wave of the pandemic, where we coded patient-reported incidents from the UK and clinician-reported incidents from France. The findings were presented to a focus group of experts in classification systems and patient safety, and a thematic analysis was conducted on the resultant transcript. Results We identified five key themes derived from the data analysis and expert group discussion. These included capitalising on the unique perspective of safety concerns from different groups, that existing frameworks do identify priority areas to investigate further, the objectives of a study shape the data interpretation, the pandemic spotlighted long-standing patient concerns, and the time period in which data are collected offers valuable context to aid explanation. The group consensus was that no COVID-19-specific codes were warranted, and the PISA classification system was fit for purpose. Conclusions We have scrutinised the meaningful use of the PISA classification system’s application during a period of systemic healthcare constraint, the COVID-19 pandemic. Despite these constraints, we found the framework can be successfully applied to incident reports to enable deductive analysis, identify areas for further enquiry and thus support organisational learning. No new or amended codes were warranted. Organisations and investigators can use our findings when reviewing their own classification systems.

Background Online asynchronous telemedicine platforms are effective and have been implemented in primary care practices, but it is unclear whether implementation was successful. Implementation has not been studied on a large scale in primary care practice. Normalisation Process Theory is a sociological theory used to understand how complex practices can be embedded into routine practice. We aimed to identify and evaluate factors affecting, and make recommendations for, implementation of online asynchronous telemedicine platforms in primary care practice using Normalisation Process Theory. Methods A systematic search was carried out across four databases. Studies included were empirical research, published between January 2015 and November 2022, of qualitative, quantitative and mixed methods designs, focusing on implementation of online asynchronous telemedicine platforms designed for two-way secure communication between patients and healthcare professionals to give or receive medical advice in primary care. Data extraction was guided by the domains of Normalisation Process Theory: context, mechanisms, outcomes. Results 25 reports from 21 primary studies were obtained. COVID-19 changed the context in which asynchronous platforms were implemented into primary care, due to restrictions on face-to-face contact. Coherence is supported by online platforms providing benefits for patients. Healthcare staff felt confident using platforms and better teamworking added to cognitive participation, however patient ‘misuse’ of platforms hindered this. Collective action was negatively affected by poor usability and integration of platforms into practice systems. Reflexive action through large- and small-scale studies had allowed improvements to be made, but poor response rates inhibit this. Outcomes include changed roles and responsibilities for staff and patients and high patient satisfaction. There are concerns regarding confidentiality and health inequities. Conclusions Increased workload, lack of integration into existing systems and poor usability affect implementation. Widespread implementation of online platforms in primary care practices can be supported by policy-makers through consistent guidelines to improve platforms’ content, functionality and compatibility with clinical systems to try to enable improvements in practice. Further research should explore patient groups or needs for which online platforms are most suitable, reasons why online platforms work better for different patients and how different patient groups can be supported to benefit from asynchronous telemedicine.

Public perceptions of pandemic viral threats and government policies can influence adherence to containment, delay, and mitigation policies such as physical distancing, hygienic practices, use of physical barriers, uptake of testing, contact tracing, and vaccination programs. The UK COVID-19 Public Experiences (COPE) study aims to identify determinants of health behaviour using the Capability, Opportunity, Motivation (COM-B) model using a longitudinal mixed-methods approach. Here, we provide a detailed description of the demographic and self-reported health characteristics of the COPE cohort at baseline assessment, an overview of data collected, and plans for follow-up of the cohort. The COPE baseline survey was completed by 11,113 UK adult residents (18+ years of age). Baseline data collection started on the 13 th of March 2020 (10-days before the introduction of the first national COVID-19 lockdown in the UK) and finished on the 13 th of April 2020. Participants were recruited via the HealthWise Wales (HWW) research registry and through social media snowballing and advertising (Facebook ® , Twitter ® , Instagram ® ). Participants were predominantly female (69%), over 50 years of age (68%), identified as white (98%), and were living with their partner (68%). A large proportion (67%) had a college/university level education, and half reported a pre-existing health condition (50%). Initial follow-up plans for the cohort included in-depth surveys at 3-months and 12-months after the first UK national lockdown to assess short and medium-term effects of the pandemic on health behaviour and subjective health and well-being. Additional consent will be sought from participants at follow-up for data linkage and surveys at 18 and 24-months after the initial UK national lockdown. A large non-random sample was recruited to the COPE cohort during the early stages of the COVID-19 pandemic, which will enable longitudinal analysis of the determinants of health behaviour and changes in subjective health and well-being over the course of the pandemic.