Informing evidence-based policy during the COVID-19 pandemic and recovery period: learning from a national evidence centre.

BACKGROUND: The COVID-19 pandemic demonstrated the vital need for research to inform policy decision-making and save lives. The Wales COVID-19 Evidence Centre (WCEC) was established in March 2021 and funded for two years, to make evidence about the impact of the pandemic and ongoing research priorities for Wales available and actionable to policy decision-makers, service leads and the public. OBJECTIVES: We describe the approaches we developed and our experiences, challenges and future vision. PROGRAM IMPLEMENTATION: The centre operated with a core team, including a public partnership group, and six experienced research groups as collaborating partners. Our rapid evidence delivery process had five stages: 1. Stakeholder engagement (continued throughout all stages); 2. Research question prioritisation; 3. Bespoke rapid evidence review methodology in a phased approach; 4. Rapid primary research; and 5. Knowledge Mobilisation to ensure the evidence was available for decision-makers. MAIN ACHIEVEMENTS: Between March 2021-23 we engaged with 44 stakeholder groups, completed 35 Rapid Evidence Reviews, six Rapid Evidence Maps and 10 Rapid Evidence Summaries. We completed four primary research studies, with three published in peer reviewed journals, and seven ongoing. Our evidence informed policy decision-making and was cited in 19 Welsh Government papers. These included pandemic infection control measures, the Action Plan to tackle gender inequalities, and Education Renew and Reform policy. We conducted 24 Welsh Government evidence briefings and three public facing symposia. POLICY IMPLICATIONS: Strong engagement with stakeholder groups, a phased rapid evidence review approach, and primary research to address key gaps in current knowledge enabled high-quality efficient, evidence outputs to be delivered to help inform Welsh policy decision-making during the pandemic. We learn from these processes to continue to deliver evidence from March 2023 as the Health and Care Research Wales Evidence Centre, with a broader remit of health and social care, to help inform policy and practice decisions during the recovery phase and beyond.

Medicina familiar y comunitaria: la especialidad más elegida en el MIR / Family and community medicine: The most chosen specialty in the MIR

Medicina Familiar y Comunitaria es la especialidad más ofertada y elegida en el MIR, sin embargo, cada año se cuestiona su atractivo debido que no se ocupan todas las plazas ofertadas y un determinado número de médicos residentes desisten de continuar en dicha especialidad una vez iniciada. En este contexto algunas de las propuestas que se plantean para abordar el problema se centran en incrementar la oferta cuando los hechos muestran que el reto está en actuar sobre la demanda haciendo más atractiva la especialidad y su ámbito de ejercicio profesional. Se procede a analizar este problema y sus condicionantes abriendo el foco del análisis a 4 elementos que pueden estar influyendo en el mismo: los aspectos vocacionales de los graduados en medicina que acuden a la especialización, las características del programa de la especialidad y de las unidades docentes en las que se lleva a cabo la formación, la presencia de la medicina de familia en la universidad como elemento clave para el conocimiento y la afección a dicha especialidad desde el grado y finalmente la situación de la atención primaria, como espacio en el que se materializa la formación y lugar prioritario de desempeño profesional de los futuros especialistas. (AU)

Family and Community Medicine is the most offered and chosen specialty in the MIR (Spanish medical residency examination), however, every year its attractiveness is questioned due to not all offered positions being filled and a certain number of resident doctors deciding not to continue in this specialty once started. In this context, some of the proposals to address the problem focus on increasing the supply when the facts show that the challenge lies in addressing the demand by making the specialty and its professional scope more attractive. The problem and its determinants are analyzed in this context by focusing on four elements that may be influencing it: the vocational aspects of medical graduates who pursue specialization, the characteristics of the specialty program and the teaching units where training is carried out, the presence of family medicine in the university as a key element for knowledge and affinity to this specialty from undergraduate studies, and finally, the situation of primary care as the space where training is materialized and the priority setting for the professional practice of future specialists. (AU)

[The Italian law 219/2017: informed consent and advance directives. When the patient-doctor communication time is law, but it is forgotten]. / Legge 219/2017: consenso informato e disposizioni anticipate di trattamento. Quando il tempo della comunicazione medico-paziente è legge, ma viene dimenticato.

The Italian law 217/2019 on "Informed consent and advance directives" is an important step forward in the redefinition of patient-doctor relationships. The law points out the principles of the decisional autonomy and freedom of the patient to choose the treatment options. However, it is underestimated and largely unapplied by the Italian cardiologists. The main elements of patient-doctor communication are present in the law. The most important is the time devoted to the patient-doctor relationship, necessary to ease the disease awareness. This time is clearly emphasized in the law, but the healthcare institutions did not arrange for the appropriate organizational procedures. Through the advance directives (ADs) the patients may express their own wishes about healthcare treatments, as well as their consent or refusal regarding the diagnostic or therapeutical doctors' suggestions, allowing their respect in case they become incompetent. This right is supported by the patients' designation of a healthcare proxy, who can interact for them with the healthcare team. However, after 6 years since the law enactment, only 0.4% of the Italian citizens signed ADs, due to insufficient information and organization by the healthcare authorities. In the Law, the advance care planning is closely related to ADs. In this process, the adults can understand and share their personal values, life goals and preferences, in order to define the potential future medical care and to discuss all the issues with family and physicians. These processes can be integrated in a broader shared decision-making, a strong tool of the patient-doctor alliance.

Experiences of cohabiting partners of women diagnosed with cancer during pregnancy: a qualitative study.

PURPOSE: When a pregnant woman is diagnosed with cancer, she faces complex and unique challenges while navigating both obstetric and oncological care. Despite often being the primary support for women diagnosed with cancer during pregnancy (CDP), little is known about the experiences of their partners. We undertook an in-depth exploration of the experiences of partners of women diagnosed with CDP in Australia. METHODS: Semi-structured interviews were conducted with partners of women diagnosed with CDP treated in Australia. Interviews explored partners' inclusion in decision making and communication with health professionals and their own coping experiences. Data were analysed thematically. RESULTS: Data from interviews with 12 male partners (N = 12) of women diagnosed with CDP were analysed. Two unique themes relevant to partners were identified: 'Partners require support to adjust to changing roles and additional burdens' and 'Treating the couple as a team facilitates agency and coping, but partners' needs are placed second by all'. CONCLUSION: Partners of women diagnosed with CDP commonly experience unique stressors and a substantial shift in previously established roles across multiple domains including medical advocacy, household coordination and parenting. Partners' coping is interlinked with how the woman diagnosed with CDP is coping. Inclusion of partners in treatment decisions and communications, and considering partners' wellbeing alongside that of the woman with CDP, is likely to be supportive for partners. In turn, this is likely to enhance the quality of support that women diagnosed with CDP receive from their partners.

From decision to reflection: understanding the experiences and unmet care needs of patients treated with immunotherapy for melanoma in the adjuvant or metastatic setting.

BACKGROUND: Despite increased use of immune checkpoint inhibitors (ICIs) in patients with advanced melanoma, little is known about patient experiences during this treatment. This study aimed to gain an in-depth understanding of experiences and unmet care needs of patients treated in the adjuvant or metastatic setting for advanced melanoma regarding their ICI treatment trajectory. METHODS: Interviews and focus groups were conducted among 35 patients treated with ICIs in the adjuvant setting for completely resected stage III (n = 14), or in the metastatic setting for irresectable stage IV (n = 21) melanoma. A thorough thematic content analysis was conducted. RESULTS: Three main themes were identified. When (1) dealing with uncertainty in the decision-making process, adjuvant patients explored the pros and cons, whereas metastatic patients considered immunotherapy their only viable option. Both groups expressed the need for additional guidance. In (2) navigating the immunotherapy course, both perceived the trajectory as intense, experienced a major impact on their and their (close) relatives' lives, and felt the need to (re)gain control. When (3) looking back on the immunotherapy experience, metastatic patients generally felt relieved, while among adjuvant patients, feelings of doubt regarding their choice for ICIs were also reported. CONCLUSIONS: ICI treatment is perceived as intensive for both patient groups, facing both comparable and distinct challenges throughout the treatment trajectory, underscoring the need for stage-specific, individualised guidance. Options regarding flexible follow-ups, low-threshold contact and psychosocial support throughout the treatment trajectory should be explored.

Comparative analysis of treatment decision-making in patients with localized prostate and cervical cancer: what influences receiving surgery or radiotherapy?

PURPOSE: This study focused on identifying the factors influencing the decision-making process in patients with localized prostate and cervical cancer in Japan and specifically examining the choice between surgery and radiotherapy. METHODS: Patients with specific cancer stages registered with a healthcare research company for whom radical surgery or radiotherapy was equally effective and recommended participated in this cross-sectional online survey. RESULTS: The responses of 206 and 231 patients with prostate and cervical cancer, respectively, revealed that both groups relied heavily on the physicians' recommendations (prostate: odds ratio (OR) = 40.3, p < 0.001; cervical: OR = 5.59, p < 0.001) and their impression of radiotherapy (prostate: OR = 9.22, p < 0.001; cervical: OR = 2.31, p < 0.001). Factors such as hypertension (OR = 6.48, p < 0.05), diabetes mellitus (OR = 9.68, p < 0.05), employment status (OR = 0.08, p < 0.01), and impressions of surgery (OR = 0.14, p < 0.01) also played a significant role in patients with prostate cancer. In contrast, the specialty of the physician (OR = 4.55, p < 0.05) proposing the treatment influenced the decision-making process of patients with cervical cancer. Information sources varied between the two groups: patients with prostate cancer were more inclined towards printed materials, whereas patients with cervical cancer were more inclined towards interpersonal relationships. CONCLUSION: Although several limitations, such as the sample and recall bias, were noted, this study emphasizes the role of psychosocial factors in the decision-making process and the requirement for tailored information sources.

Medical record prompts improve the frequency and documentation of dizziness and driving conversations in the ENT balance clinic.

BACKGROUND: Driving capacity is affected by vestibular disorders and the medications used to treat them. Driving is not considered during medical consultations, with 92 per cent of patients attending a centre for dizziness not discussing it with the doctor. OBJECTIVE: To investigate if medical record prompts facilitate dizziness and driving conversations in ENT balance clinics. METHODS: A questionnaire was designed to reflect the current standards of practice and advice given regarding driving and dizziness during balance clinic consultations. RESULTS: Medical record prompts facilitated the improved frequency and recording of shared decision-making conversations about driving and dizziness in 98 per cent of consultations. CONCLUSION: This study highlights the benefits of medical record prompts for documented and accurate shared decision-making conversations surrounding dizziness, vertigo, vestibular conditions and driving. This potentially improves safety for all road users, and protects the patient and clinician in the event of road traffic accidents and medico-legal investigations.

Practical implications of overlapping mental capacity assessments.

Richard Griffith, Senior Lecturer in Health Law at Swansea University, considers the practical implications of undertaking mental capacity assessments with a person across a range of different decisions.

An integrated group decision-making method under q-rung orthopair fuzzy 2-tuple linguistic context with partial weight information.

Considering the advantages of q-rung orthopair fuzzy 2-tuple linguistic set (q-RFLS), which includes both linguistic and numeric data to describe evaluations, this article aims to design a new decision-making methodology by integrating Vlsekriterijumska Optimizacija I Kompromisno Resenje (VIKOR) and qualitative flexible (QUALIFLEX) methods based on the revised aggregation operators to solve multiple criteria group decision making (MCGDM). To accomplish this, we first revise the extant operational laws of q-RFLSs to make up for their shortcomings. Based on novel operational laws, we develop q-rung orthopair fuzzy 2-tuple linguistic (q-RFL) weighted averaging and geometric operators and provide the corresponding results. Next, we develop a maximization deviation model to determine the criterion weights in the decision-making procedure, which accounts for partial weight unknown information. Then, the VIKOR and QUALIFLEX methodologies are combined, which can assess the concordance index of each ranking combination using group utility and individual maximum regret value of alternative and acquire the ranking result based on each permutation's general concordance index values. Consequently, a case study is conducted to select the best bike-sharing recycling supplier utilizing the suggested VIKOR-QUALIFLEX MCGDM method, demonstrating the method's applicability and availability. Finally, through sensitivity and comparative analysis, the validity and superiority of the proposed method are demonstrated.

A theory of oral healthcare decision-making in Appalachia.

INTRODUCTION: People make oral healthcare decisions regardless of having partial information, misinformation, sources that deliberately mislead, or information that is culturally influenced. This is particularly true in the Appalachian culture where oral healthcare decision-making practices are not well understood by researchers and dental professionals. Despite efforts to improve dental care utilization, the Appalachia region remains low in oral healthcare utilization. There is a need for a theory to identify concepts in decision-making when seeking oral healthcare. The theory could be useful in creating oral health interventions. The study objective is to develop a theory to identify concepts that influence oral healthcare decision-making in Appalachia (OHDA). METHODS: The researchers used a grounded theory qualitative study design to explain data for a theory of OHDA. Participants from Appalachia, in 20-minute interviews, provided insights into concepts that influence OHDA from August 22, 2017 to May 26, 2022. Notes/memos were written during and after the interviews and coding was conducted after the interviews. Open coding categories emerged through constant comparison of responses. RESULTS: Five overarching concepts that embody OHDA were discovered: Affect (Level of Pain/Emotion/Stress involvement), Awareness, Trust/belief, Resources, and Risk Perception. All participants discussed the impact of social media toward these concepts. CONCLUSION: To influence a person's OHDA, public health officials and researchers need to address the person's affect, level of awareness, trust/belief, available resources, and risk perception. Social media is very important in awareness concerning oral health information. These factors are important to consider for similar research in oral healthcare utilization at the population level.

Locus coeruleus integrity is related to an exploitation-based decision-making bias in older adulthood.

Optimal decision-making balances exploration for new information against exploitation of known rewards, a process mediated by the locus coeruleus and its norepinephrine projections. We predicted that an exploitation-bias that emerges in older adulthood would be associated with lower microstructural integrity of the locus coeruleus. Leveraging in vivo histological methods from quantitative MRI-magnetic transfer saturation-we provide evidence that older age is associated with lower locus coeruleus integrity. Critically, we demonstrate that an exploitation bias in older adulthood, assessed with a foraging task, is sensitive and specific to lower locus coeruleus integrity. Because the locus coeruleus is uniquely vulnerable to Alzheimer's disease pathology, our findings suggest that aging, and a presymptomatic trajectory of Alzheimer's related decline, may fundamentally alter decision-making abilities in later life.

The relative contribution of acoustic signals versus movement cues in group coordination and collective decision-making.

To benefit from group living, individuals need to maintain cohesion and coordinate their activities. Effective communication thus becomes critical, facilitating rapid coordination of behaviours and reducing consensus costs when group members have differing needs and information. In many bird and mammal species, collective decisions rely on acoustic signals in some contexts but on movement cues in others. Yet, to date, there is no clear conceptual framework that predicts when decisions should evolve to be based on acoustic signals versus movement cues. Here, we first review how acoustic signals and movement cues are used for coordinating activities. We then outline how information masking, discrimination ability (Weber's Law) and encoding limitations, as well as trade-offs between these, can identify which types of collective behaviours likely rely on acoustic signals or movement cues. Specifically, our framework proposes that behaviours involving the timing of events or expression of specific actions should rely more on acoustic signals, whereas decisions involving complex choices with multiple options (e.g. direction and destination) should generally use movement cues because sounds are more vulnerable to information masking and Weber's Law effects. We then discuss potential future avenues of enquiry, including multimodal communication and collective decision-making by mixed-species animal groups. This article is part of the theme issue 'The power of sound: unravelling how acoustic communication shapes group dynamic'.

Individual and ecological heterogeneity promote complex communication in social vertebrate group decisions.

To receive the benefits of social living, individuals must make effective group decisions that enable them to achieve behavioural coordination and maintain cohesion. However, heterogeneity in the physical and social environments surrounding group decision-making contexts can increase the level of difficulty social organisms face in making decisions. Groups that live in variable physical environments (high ecological heterogeneity) can experience barriers to information transfer and increased levels of ecological uncertainty. In addition, in groups with large phenotypic variation (high individual heterogeneity), individuals can have substantial conflicts of interest regarding the timing and nature of activities, making it difficult for them to coordinate their behaviours or reach a consensus. In such cases, active communication can increase individuals' abilities to achieve coordination, such as by facilitating the transfer and aggregation of information about the environment or individual behavioural preferences. Here, we review the role of communication in vertebrate group decision-making and its relationship to heterogeneity in the ecological and social environment surrounding group decision-making contexts. We propose that complex communication has evolved to facilitate decision-making in specific socio-ecological contexts, and we provide a framework for studying this topic and testing related hypotheses as part of future research in this area. This article is part of the theme issue 'The power of sound: unravelling how acoustic communication shapes group dynamics'.

Group vocal composition and decision-making during roost finding in Spix's disk-winged bats.

Theoretical work suggests that having many informed individuals within social groups can promote efficient resource location. However, it may also give rise to group fragmentation if members fail to reach consensus on their direction of movement. In this study, we investigate whether the number of informed individuals, exemplified by bats emitting calls from different roosts, influences group cohesion in Spix's disk-winged bats (Thyroptera tricolor). Additionally, we explore the role of signal reliability, quantified through signalling rates, in group consensus on where to roost. These bats use contact calls to announce the location of a roost site and recruit conspecifics. The groups they form exhibit high levels of cohesion and consist of both vocal and non-vocal bats, with vocal behaviour being consistent over time. Our findings revealed that an increase in the number of roosts broadcasting calls is strongly associated with the likelihood of groups fragmenting among multiple roosts. Additionally, we found that a majority of group members enter the roost with higher calling rates. This phenomenon can mitigate the risk of group fragmentation, as bats emitting more calls may contribute to greater group consensus on roosting locations, thereby reducing the likelihood of individuals separating and enhancing overall group cohesion. Our results highlight the potential costs of having too many information producers for group coordination, despite their established role in finding critical resources. This article is part of the theme issue 'The power of sound: unravelling how acoustic communication shapes group dynamics'.

How prehospital emergency personnel manage ethical challenges: the importance of confidence, trust, and safety.

BACKGROUND: Ethical challenges constitute an inseparable part of daily decision-making processes in all areas of healthcare. Ethical challenges are associated with moral distress that can lead to burnout. Clinical ethics support has proven useful to address and manage such challenges. This paper explores how prehospital emergency personnel manage ethical challenges. The study is part of a larger action research project to develop and test an approach to clinical ethics support that is sensitive to the context of emergency medicine. METHODS: We explored ethical challenges and management strategies in three focus groups, with 15 participants in total, each attended by emergency medical technicians, paramedics, and prehospital anaesthesiologists. Focus groups were audio-recorded and transcribed verbatim. The approach to data analysis was systematic text condensation approach. RESULTS: We stratified the management of ethical challenges into actions before, during, and after incidents. Before incidents, participants stressed the importance of mutual understandings, shared worldviews, and a supportive approach to managing emotions. During an incident, the participants employed moral perception, moral judgments, and moral actions. After an incident, the participants described sharing ethical challenges only to a limited extent as sharing was emotionally challenging, and not actively supported by workplace culture, or organisational procedures. The participants primarily managed ethical challenges informally, often using humour to cope. CONCLUSION: Our analysis supports and clarifies that confidence, trust, and safety in relation to colleagues, management, and the wider organisation are essential for prehospital emergency personnel to share ethical challenges and preventing moral distress turning into burnout.

Urban people's preferences for life-sustaining treatment or artificial nutrition and hydration in advance decisions.

BACKGROUND: The Patient Right to Autonomy Act (PRAA), implemented in Taiwan in 2019, enables the creation of advance decisions (AD) through advance care planning (ACP). This legal framework allows for the withholding and withdrawal of life-sustaining treatment (LST) or artificial nutrition and hydration (ANH) in situations like irreversible coma, vegetative state, severe dementia, or unbearable pain. This study aims to investigate preferences for LST or ANH across various clinical conditions, variations in participant preferences, and factors influencing these preferences among urban residents. METHODS: Employing a survey of legally structured AD documents and convenience sampling for data collection, individuals were enlisted from Taipei City Hospital, serving as the primary trial and demonstration facility for ACP in Taiwan since the commencement of the PRAA in its inaugural year. The study examined ADs and ACP consultation records, documenting gender, age, welfare entitlement, disease conditions, family caregiving experience, location of ACP consultation, participation of second-degree relatives, and the intention to participate in ACP. RESULTS: Data from 2337 participants were extracted from electronic records. There was high consistency in the willingness to refuse LST and ANH, with significant differences noted between terminal diseases and extremely severe dementia. Additionally, ANH was widely accepted as a time-limited treatment, and there was a prevalent trend of authorizing a health care agent (HCA) to make decisions on behalf of participants. Gender differences were observed, with females more inclined to decline LST and ANH, while males tended towards accepting full or time-limited treatment. Age also played a role, with younger participants more open to treatment and authorizing HCA, and older participants more prone to refusal. CONCLUSION: Diverse preferences in LST and ANH were shaped by the public's current understanding of different clinical states, gender, age, and cultural factors. Our study reveals nuanced end-of-life preferences, evolving ADs, and socio-demographic influences. Further research could explore evolving preferences over time and healthcare professionals' perspectives on LST and ANH decisions for neurological patients..

Prosocial emotions predict individual differences in economic decision-making during ultimatum game with dynamic reciprocal contexts.

Social decision-making is known to be influenced by predictive emotions or the perceived reciprocity of partners. However, the connection between emotion, decision-making, and contextual reciprocity remains less understood. Moreover, arguments suggest that emotional experiences within a social context can be better conceptualised as prosocial rather than basic emotions, necessitating the inclusion of two social dimensions: focus, the degree of an emotion's relevance to oneself or others, and dominance, the degree to which one feels in control of an emotion. For better representation, these dimensions should be considered alongside the interoceptive dimensions of valence and arousal. In an ultimatum game involving fair, moderate, and unfair offers, this online study measured the emotions of 476 participants using a multidimensional affective rating scale. Using unsupervised classification algorithms, we identified individual differences in decisions and emotional experiences. Certain individuals exhibited consistent levels of acceptance behaviours and emotions, while reciprocal individuals' acceptance behaviours and emotions followed external reward value structures. Furthermore, individuals with distinct emotional responses to partners exhibited unique economic responses to their emotions, with only the reciprocal group exhibiting sensitivity to dominance prediction errors. The study illustrates a context-specific model capable of subtyping populations engaged in social interaction and exhibiting heterogeneous mental states.

Heuristics in risky decision-making relate to preferential representation of information.

When making choices, individuals differ from one another, as well as from normativity, in how they weigh different types of information. One explanation for this relates to idiosyncratic preferences in what information individuals represent when evaluating choice options. Here, we test this explanation with a simple risky-decision making task, combined with magnetoencephalography (MEG). We examine the relationship between individual differences in behavioral markers of information weighting and neural representation of stimuli pertinent to incorporating that information. We find that the extent to which individuals (N = 19) behaviorally weight probability versus reward information is related to how preferentially they neurally represent stimuli most informative for making probability and reward comparisons. These results are further validated in an additional behavioral experiment (N = 88) that measures stimulus representation as the latency of perceptual detection following priming. Overall, the results suggest that differences in the information individuals consider during choice relate to their risk-taking tendencies.

A progressive approach to multi-criteria group decision-making: N-bipolar hypersoft topology perspective.

This paper investigates N-bipolar hypersoft topology (N-BHST), a novel extension of both the well-established N-hypersoft topology (N-HST) and hypersoft topology (HST). Deviating significantly from its precursor, the N-bipolar hypersoft (N-BHS) set, N-BHST introduces a multi-opinion approach to decision-making, augmenting robustness and adaptability. This innovative framework addresses identified limitations in N-bipolar soft topology (N-BST), especially in managing multi-argument approximate functions. The study analyzes various operators (closure, interior, exterior, and boundary) within the N-BHST framework, elucidating their interrelationships. Additionally, an examination is carried out on the enhancement of multi-criteria group decision-making (MCGDM) using N-BHST, setting it apart from existing models. A numerical example is presented to illustrate its application in real-world decision scenarios.

Reminder in scarlet: balancing empathy and detachment in oncology.

This article explores an oncologist's journey from emotional vulnerability to practised detachment. A transformative moment, prompted by a poignant photograph of a patient in a scarlet saree, confronts the author with the emotional intricacies of patient care. The narrative delves into the human stories woven into the medical landscape, capturing the delicate balance between clinical detachment and maintaining a genuine connection. It prompts reflection on the emotional dynamics within the decision-making fabric of healthcare.