Advancing the communication of genetic risk for cardiometabolic diseases: a critical interpretive synthesis.

BACKGROUND: Genetics play an important role in risk for cardiometabolic diseases-including type 2 diabetes, cardiovascular disease and obesity. Existing research has explored the clinical utility of genetic risk tools such as polygenic risk scores-and whether interventions communicating genetic risk information using these tools can impact on individuals' cognitive appraisals of disease risk and/or preventative health behaviours. Previous systematic reviews suggest mixed results. To expand current understanding and address knowledge gaps, we undertook an interpretive, reflexive method of evidence synthesis-questioning the theoretical basis behind current interventions that communicate genetic risk information and exploring how the effects of genetic risk tools can be fully harnessed for cardiometabolic diseases. METHODS: We obtained 189 records from a combination of database, website and grey literature searches-supplemented with reference chaining and expert subject knowledge within the review team. Using pre-defined critical interpretive synthesis methods, quantitative and qualitative evidence was synthesised and critiqued alongside theoretical understanding from surrounding fields of behavioural and social sciences. FINDINGS: Existing interventions communicating genetic risk information focus predominantly on the "self", targeting individual-level cognitive appraisals, such as perceived risk and perceived behavioural control. This approach risks neglecting the role of contextual factors and upstream determinants that can reinforce individuals' interpretations of risk. It also assumes target populations to embody an "ascetic subject of compliance"-the idea of a patient who strives to comply diligently with professional medical advice, logically and rationally adopting any recommended lifestyle changes. We developed a synthesising argument-"beyond the ascetic subject of compliance"-grounded in three major limitations of this perspective: (1) difficulty applying existing theories/models to diverse populations, (2) the role of familial variables and (3) the need for a life course perspective. CONCLUSIONS: Interventions communicating genetic risk information should account for wider influences that can affect individuals' responses to risk at different levels-including through interactions with their family systems, socio-cultural environments and wider health provision. PROTOCOL REGISTRATION: PROSPERO CRD42021289269.

Multimorbidity as chronic crisis: 'Living on' with multiple long-term health conditions in a socially disadvantaged London borough.

Contemporary health services are primarily designed around single diseases. People with multimorbidity (multiple long-term health conditions) often become burdened by accumulated treatments. Through multimodal fieldwork in a socially disadvantaged London borough, we explore how people living with multimorbidity navigate conditions of 'chronic crisis', encompassing ill-health, overmedicalisation, polypharmacy and social exclusion. Participants in our study frequently experience 'existential stuckness', exacerbated by processes of social exclusion. We argue that diagnoses and treatments should account for people's unique aetiologies, and prioritise the notion of 'flourishing' over 'cure' as the absence of disease is not always achievable. To foster this emphasis on flourishing, we advocate for a dialogical turn in diagnostic processes that better support patients' existential needs in the context of long-term illness.

What do we want to get out of this? a critical interpretive synthesis of the value of process evaluations, with a practical planning framework.

BACKGROUND: Process evaluations aim to understand how complex interventions bring about outcomes by examining intervention mechanisms, implementation, and context. While much attention has been paid to the methodology of process evaluations in health research, the value of process evaluations has received less critical attention. We aimed to unpack how value is conceptualised in process evaluations by identifying and critically analysing 1) how process evaluations may create value and 2) what kind of value they may create. METHODS: We systematically searched for and identified published literature on process evaluation, including guidance, opinion pieces, primary research, reviews, and discussion of methodological and practical issues. We conducted a critical interpretive synthesis and developed a practical planning framework. RESULTS: We identified and included 147 literature items. From these we determined three ways in which process evaluations may create value or negative consequences: 1) through the socio-technical processes of 'doing' the process evaluation, 2) through the features/qualities of process evaluation knowledge, and 3) through using process evaluation knowledge. We identified 15 value themes. We also found that value varies according to the characteristics of individual process evaluations, and is subjective and context dependent. CONCLUSION: The concept of value in process evaluations is complex and multi-faceted. Stakeholders in different contexts may have very different expectations of process evaluations and the value that can and should be obtained from them. We propose a planning framework to support an open and transparent process to plan and create value from process evaluations and negotiate trade-offs. This will support the development of joint solutions and, ultimately, generate more value from process evaluations to all.

Patient engagement with research: European population register study.

BACKGROUND: Lay involvement in implementation of research evidence into practice may include using research findings to guide individual care, as well as involvement in research processes and policy development. Little is known about the conditions required for such involvement. AIM: To assess stroke survivors' research awareness, use of research evidence in their own care and readiness to be involved in research processes. METHODS: Cross sectional survey of stroke survivors participating in population-based stroke registers in six European centres. RESULTS: The response rate was 74% (481/647). Reasons for participation in register research included responding to clinician request (56%) and to 'give something back' (19%); however, 20% were unaware that they were participating in a stroke register. Research awareness was generally low: 57% did not know the purpose of the register they had been recruited to; 73% reported not having received results from the register they took part in; 60% did not know about any research on stroke care. Few participants (7.6%) used research evidence during their consultations with a doctor. The 34% of participants who were interested in being involved in research were younger, more highly educated and already research aware. CONCLUSIONS: Across Europe, stroke survivors already participating in research appear ill informed about stroke research. Researchers, healthcare professionals and patient associations need to improve how research results are communicated to patient populations and research participants, and to raise awareness of the relationship between research evidence and increased quality of care.

'Troubling' medication reviews in the context of polypharmacy and ageing: A linguistic ethnography.

Healthy ageing is a global priority. Polypharmacy (the use of 5+ medicines) amongst older people is increasing, with over one-third of adults in England, aged 80-89, prescribed at least eight medications. Although sometimes necessary, polypharmacy can be harmful; the risk of harm increases with age and number of medicines prescribed. Medication reviews are recommended as one way of reducing the potential harms of polypharmacy although evidence of clinically significant benefit of medication reviews as currently delivered is limited. What happens in medication reviews in practice is poorly understood. We used a linguistic ethnography approach to explore how medication reviews proceed and what is accomplished during these consultations. We studied 18 video-recorded medication review consultations from three general practices in England. The consultations involved patients aged 65 or older, prescribed 10+ medications ('higher risk' polypharmacy), and primary care clinicians (general practitioner or clinical pharmacist). Video-recordings were gathered as part of a wider ethnographic study investigating practices of polypharmacy in primary care between 2017 and 2021. We conducted microanalysis of consultation data, drawing on our ethnographic knowledge of the organisational, institutional and domestic contexts of polypharmacy to inform our interpretation of these interactions. Consultations were time-consuming and involved lengthy stretches of interactional trouble: non-understandings; misunderstandings; misalignments. These stretches revealed profound uncertainties as to the effectiveness of medicines in the context of multimorbidity and polypharmacy. These uncertainties seeped further into 'troubles talk' concerning patients' existential concerns relating to enduring illness, ageing and mortality. Although these existential concerns were partially articulated, clinicians and patients left such troubles talk unelaborated, unresolved and unfinished. Participants succeeded in smoothing over interactional difficulties and maintaining respectful relationships but often fell short of addressing problematic polypharmacy more directly.

Providing care to marginalised communities: a qualitative study of community pharmacy teams.

BACKGROUND: Health inequalities in the UK are widening, particularly since the COVID-19 pandemic. Community pharmacies are the most visited healthcare provider in England and are ideally placed to provide and facilitate access to care for those most disadvantaged. AIM: To explore the experiences and needs of community pharmacy teams in providing care for marginalised groups and how this has changed since the COVID-19 pandemic. DESIGN AND SETTING: A qualitative study in community pharmacy and across primary care. METHOD: Semi-structured interviews were undertaken with members of community pharmacy teams, primary care network (PCN) pharmacists, GPs, and nurses in the North of England. RESULTS: In total, 31 individuals participated in an interview (26 pharmacy staff, three GPs, and two nurses). Most participants acknowledged that their pharmacy had become busier since COVID-19 because of increased footfall compounded by patient difficulties in navigating remote digital systems. Few participants had received any formal training on working with marginalised communities; however, organisational barriers (such as lack of access to translation facilities) combined with interorganisational barriers (such as lack of integrated care) made it more difficult to provide care for some marginalised groups. Despite this, the continuity of care provided by many pharmacies was viewed as an important factor in enabling marginalised groups to access and receive care. CONCLUSION: There are opportunities to better utilise the skills of community pharmacy teams. Resources, such as access to translation services, and interventions to enable better communication between community pharmacy teams and other primary care services, such as general practice, are essential.

Negotiating the polypharmacy paradox: a video-reflexive ethnography study of polypharmacy and its practices in primary care.

BACKGROUND: Polypharmacy is an important safety concern. Medication reviews are recommended for patients affected by polypharmacy, but little is known about how they are conducted, nor how clinicians make sense of them. We used video-reflexive ethnography (VRE) to: illuminate how reviews are conducted; elicit professional dialogue and concerns about polypharmacy; invite new transferable understandings of polypharmacy and its management. METHODS: We conducted 422 hours of fieldwork (participant observation), filmed 18 consultations between clinicians and patients receiving 10 or more regular items of medication (so-called 'higher risk' polypharmacy) and played short clips of film footage to 34 participants (general practitioners, nurses, clinical pharmacists, practice managers) in seven audio-recorded reflexive workshops. Our analysis focused on 'moments of potentiation' and traced clinicians' shifting understandings of their practices. RESULTS: Participants rarely referenced biomedical aspects of prescribing (eg, drug-drug interactions, 'Numbers Needed to Treat/Harm') focussing instead on polypharmacy as an emotional and relational challenge. Clinicians initially denigrated their medication review work as mundane. Through VRE they reframed their work as complex, identifying polypharmacy as a delicate matter to negotiate. In patients with multimorbidity and polypharmacy it was difficult to disentangle medication review from other aspects of patients' medical care. Such conditions of complexity presented clinicians with competing professional obligations which were difficult to reconcile. Medication review was identified as an ongoing process, rather than a discrete 'one-off' activity. Meaningful progress towards tackling polypharmacy was only possible through small, incremental, carefully supported changes in which both patient and clinician negotiated a sharing of responsibility, best supported by continuity of care. CONCLUSIONS: Supporting acceptable, feasible and meaningful progress towards addressing problematic polypharmacy may require shifts in how medication reviews are conceptualised. Responsible decision-making under conditions of such complexity and uncertainty depends crucially on the affective or emotional quality of the clinician-patient relationship.

Keeping in balance on the multimorbidity tightrope: A narrative analysis of older patients' experiences of living with and managing multimorbidity.

Primary care management of patients with multimorbidity in the UK is underpinned by clinical guidelines, quality standards and measurable targets which govern practices of risk management and disease control. There is concern that standardised approaches may not always be appropriate for older patients living with multimorbidity. Using a narrative approach, we elicited the voices of older people living with multiple conditions in order to rethink chronicity, and consider what their accounts might mean for reconfiguring care practices. Within an ethnographic study of multimorbidity and polypharmacy, we conducted in-depth interviews, based on the Biographical Narrative Interpretive Method, with 24 participants aged 65 to 94. Participants were recruited from three general practices in England. All had two or more chronic conditions and were prescribed ten or more medicines. Our analysis draws on Bakhtinian theory, tracing the multiple ways in which participants voiced living with multimorbidity. In this paper, we focus on 'keeping in balance' which emerged as a key meta-conceptualisation across our dataset. Adopting the metaphor of the 'multimorbidity tightrope' we explore the precarity of patients' experiences and show their struggle to create coherence from within a deeply ambiguous living situation. We consider how and to what extent participants' narrative constructions co-opt or resist normative biomedical framings of multimorbidity. Our analysis foregrounds the complex ways in which patients' voices and values may sometimes be at odds with those promoted within professional guidelines. Narrative approaches may offer significant potential for reorienting healthcare towards enabling patients to live a flourishing life, even when facing significant adversity.

Community pharmacy and general practice collaborative and integrated working: a realist review protocol.

INTRODUCTION: Increasing collaborative and integrated working between General practice (GP) and Community pharmacy (CP) is a key priority of the UK National Health Service and has been proposed as a solution to reducing health system fragmentation, improving synergies and coordination of care. However, there is limited understanding regarding how and under which circumstances collaborative and integrated working between GP and CP can be achieved in practice and how regulatory, organisational and systemic barriers can be overcome. METHODS AND ANALYSIS: The aim of our review is to understand how, when and why working arrangements between GP and CP can provide the conditions necessary for optimal communication, decision-making, and collaborative and integrated working. A realist review approach will be used to synthesise the evidence to make sense of the complexities inherent in the working relationships between GP and CP. Our review will follow Pawson's five iterative stages: (1) finding existing theories; (2) searching for evidence (our main searches were conducted in April 2022); (3) article selection; (4) data extraction and (5) synthesising evidence and drawing conclusions. We will synthesise evidence from grey literature, qualitative, quantitative and mixed-methods research. The research team will work closely with key stakeholders and include patient and public involvement and engagement throughout the review process to refine the focus of the review and the programme theory. Collectively, our refined programme theory will explain how collaborative and integrated working between GP and CP works (or not), for whom, how and under which circumstances. ETHICS AND DISSEMINATION: Formal ethical approval is not required for this review as it draws on secondary data from published articles and grey literature. Findings will be widely disseminated through: publication in peer-reviewed journals, seminars, international conference presentations, patients' association channels, social media, symposia and user-friendly summaries. PROSPERO REGISTRATION NUMBER: CRD42022314280.

Self-reported long-term needs after stroke.

BACKGROUND AND PURPOSE: Development of interventions to manage patients with stroke after discharge from the hospital requires estimates of need. This study estimates the prevalence of self-reported need in community-dwelling stroke survivors across the United Kingdom. METHODS: We conducted a survey of stroke survivors 1 to 5 years poststroke recruited through Medical Research Council General Practice Research Framework general practices and 2 population-based stroke registers. Levels and type of need were calculated with comparisons among sociodemographic groups, disability level, and cognitive status using the χ2 test or Fisher exact test, as appropriate. RESULTS: From 1251 participants, response rates were 60% (national sample) and 78% (population registers sample) with few differences in levels of reported need between the 2 samples. Over half (51%) reported no unmet needs; among the remainder, the median number of unmet needs was 3 (range, 1 to 13). Proportions reporting unmet clinical needs ranged from 15% to 59%; 54% reported an unmet need for stroke information; 52% reported reduction in or loss of work activities, significantly more from black ethnic groups (P=0.006); 18% reported a loss in income and 31% an increase in expenses with differences by age, ethnic group, and deprivation score. In multivariable analysis, ethnicity (P=0.032) and disability (P=0.014) were associated with total number of unmet needs. CONCLUSIONS: Multiple long-term clinical and social needs remain unmet long after incident stroke. Higher levels of unmet need were reported by people with disabilities, from ethnic minority groups, and from those living in the most deprived areas. Development and testing of novel methods to meet unmet needs are required.

Organising polypharmacy: unpacking medicines, unpacking meanings-an ethnographic study.

OBJECTIVES: We explore how older patients affected by polypharmacy manage the 'hidden work' of organising their medicines, how they make sense of this work and integrate it into their lives. DESIGN AND SETTING: Ethnographic study observing patients over 18-24 months in patients' homes, general practice and community pharmacy, in England, UK. PARTICIPANTS AND METHODS: Ethnographic case study including longitudinal follow-up of 24 patients aged 65 or older and prescribed ten or more items of medication. Our dataset includes: 562 hours of ethnographic observation across patients homes, community pharmacies and general practices; 47 audio-recorded interviews with patients about their lives and medicines practices; cultural probes (photographs, body maps, diaries and imagined 'wishful thinking' conversations); fieldnotes from regular home visits; telephone calls, and observation/video-recording of healthcare encounters. We apply a 'practice theory' lens to our analysis, illuminating what is being accomplished, why and by whom. RESULTS: All patients had developed strategies and routines for organising medicines into their lives, negotiating medicine taking to enable acceptable adherence and make their medicines manageable. Strategies adopted by patients often involved the use of 'do-it-yourself' dosette boxes. This required careful 'organising' work similar to that done by pharmacy staff preparing multicompartment compliance aids (MCCAs). Patients incorporated a range of approaches to manage supplies and flex their regimens to align with personal values and priorities. Practices of organising medicines are effortful, creative and often highly collaborative. Patients strive for adherence, but their organisational efforts privilege 'living with medicines' over taking medicines strictly 'as prescribed'. CONCLUSIONS: Polypharmacy demands careful organising. The burden of organising polypharmacy always falls somewhere, whether undertaken by pharmacists as they prepare MCCAs or by patients at home. Greater appreciation among prescribers of the nature and complexity of this work may provide a useful point of departure for tackling the key issue that sustains it: polypharmacy.

'It's all about patient safety': an ethnographic study of how pharmacy staff construct medicines safety in the context of polypharmacy.

OBJECTIVE: As polypharmacy increases, so does the complexity of prescribing, dispensing and consuming medicines. Medication safety is typically framed as the avoidance of harm, achievable through adherence to policies, guidelines and operational standards. Automation, robotics and technologies are positioned as key players in the elimination of medication error in the face of escalating demand, despite limited research illuminating how these innovations are taken up, used and adapted in practice. We explore how 'safety' is constructed and accomplished in community pharmacies in the context of polypharmacy. DESIGN AND SETTING: In-depth ethnographic case study across four community pharmacies in England (December 2017-July 2019). Data collection entailed 140 hours participant observation and 19 in-depth interviews. Practice theory informed the analysis. PARTICIPANTS: 33 pharmacy staff (counter staff, technicians, dispensers, pharmacists). RESULTS: In their working practices related to polypharmacy, staff used the term 'safety' in explanations of why and how they were doing things in particular ways. We present three interlinked analytic themes within an overarching narrative of care: caring for the technology; caring for each other; and caring for the patient. Our study revealed a paradox: polypharmacy was visible, pervasive and productive of numerous routines, but rarely discussed as a safety concern per se. Safety meant ensuring medicines were dispensed as prescribed, and correcting errors pertaining to individual drugs through the clinical check. Pharmacy staff did not actively challenge polypharmacy, even when the volume of medicines dispensed might indicate 'high risk' polypharmacy, locating the responsibility for polypharmacy with prescribing clinicians. CONCLUSION: 'Safety' in the performance of practices relating to polypharmacy was not a fixed, defined notion, but an ongoing, collaborative accomplishment, emerging within an organisational narrative of 'care'. Despite meticulous attention to 'safety', carefully guarded professional boundaries meant that addressing polypharmacy per se in the context of community pharmacy was beyond reach.

What is involvement in research and what does it achieve? Reflections on a pilot study of the personal costs of stroke.

BACKGROUND: Health researchers are encouraged to involve service users as partners in their research. There is a need to increase the evidence base of involvement, including an accumulation of empirical accounts of involvement practices, demonstrating how involvement influences research and refinement of the concept itself. AIMS: To report the development of a pilot study by academic researchers and stroke service users belonging to a user research group to investigate costs of stroke to individuals and families; to reflect on what this example of user involvement achieved and implications for what involvement means. METHODS: We conducted a 2-year ethnographic study that included participant observation, formal and informal interviews with professionals and user group members and documentary analysis. Data were systematically recorded to permit description of processes and reflexive analysis. RESULTS AND CONCLUSIONS: We report on five stages of the research process from service user identification of a research question to interpretation of pilot study findings. Professional researchers led the research process and developed a novel method to involve stroke service users in the development of a questionnaire. Some academic colleagues questioned the value of the proposed investigation as it did not appear to conform to implicit criteria of quality research. We argue that the moral status that user involvement has acquired means that academics' concerns about quality did not prevent the pilot study from being conducted. We suggest that much of what was undertaken might be considered standard good practice in developing new research studies but also identify additional benefits of user involvement. Implications for conceptual development and evaluation are discussed.

The impact of public involvement in health research: what are we measuring? Why are we measuring it? Should we stop measuring it?

As public involvement in the design, conduct and dissemination of health research has become an expected norm and firmly enshrined in policy, interest in measuring its impact has also grown. Despite a drive to assess the impact of public involvement, and a growing body of studies attempting to do just this, a number of questions have been largely ignored. This commentary addresses these omissions: What is the impact of all this focus on measuring impact? How is the language of impact shaping the debate about, and the practice of, public involvement in health research? And how have shifting conceptualisations of public involvement in health research shaped, and been shaped by, the way we think about and measure impact? We argue that the focus on impact risks distorting how public involvement in health research is conceptualised and practised, blinding us to possible negative impacts. We call for a critical research agenda for public involvement that [a] considers public involvement not as an instrumental intervention but a social practice of dialogue and learning between researchers and the public; [b] explores how power relations play out in the context of public involvement in health research, what empowerment means and whose interests are served by it, and [c] asks questions about possible harms as well as benefits of public involvement, and whether the language of impact is helpful or not.

Addressing the polypharmacy challenge in older people with multimorbidity (APOLLO-MM): study protocol for an in-depth ethnographic case study in primary care.

INTRODUCTION: Polypharmacy is on the rise. It is burdensome for patients and is a common source of error and adverse drug reactions, especially among older adults. Health policy advises clinicians to practice medicines optimisation-a person-centred approach to safe, effective medicines use. There has been little research exploring older patients' perspectives and priorities around medicines-taking or their actual practices of fitting medicines into their daily lives and how these are shaped by the wider context of healthcare. METHODS AND ANALYSIS: We will conduct an in-depth multisite ethnographic case study. The study is based in seven clinical sites (three general practices and four community pharmacies) and includes longitudinal ethnographic follow-up of older adults, organisational ethnography and participatory methods. Main data sources include field notes of observations in the home and clinical settings; interviews with patients and professionals; cultural probe activities; video recordings of clinical consultations and interprofessional talk; documents. Our analysis will illuminate the everyday practices of polypharmacy from a range of lay and professional perspectives; the institutional contexts within which these practices play out and the sense-making work that sustains-or challenges-these practices. Our research will adopt a 'practice theory' lens, drawing on the sociology of organisational routines and other relevant social theory guided by ongoing iterative data analysis. ETHICS APPROVAL: The study has HRA approval and received a favourable ethical opinion from the Leeds West Research Ethics Committee (IRAS project ID: 205517; REC reference 16/YH/0462). DISSEMINATION: Aside from academic outputs, our findings will inform the development of recommendations for practice and policy including an interactive e-learning resource. We will also work with service users to co-design patient/public engagement resources.

Closing the gap between science and policy on air pollution and health.

This paper discusses critical issues underlying the interface between air quality science, stakeholder participation, and policy development within the context of the European AIRNET Network multistakeholder project. The paper argues that it is not only the content of air pollution and health issues that stakeholders consider important, but also the process and mechanisms by which the interface operates. A visual representation of the interaction between science, society, and stakeholders in the development, dissemination, and evaluation of effective air quality policy strategies is provided. The paper discusses the role of AIRNET in supporting the Clean Air for Europe (CAFE) program and assesses the AIRNET experience in establishing a network to bridge the gap between air quality policy, stakeholders, the public, and scientific communities.

Meeting report: national workshops for the communication of air pollution and health information: summary of four workshops in different regions of Europe.

AIRNET was a thematic network project (2002-2004) initiated to stimulate the interaction between researchers in air pollution and health in Europe. As part of AIRNET's communication strategy, a standardized workshop model was developed to organize national meetings on air pollution and health (AIRNET network days) . Emphasis was given to tailor the national workshop information and related activities to the specific needs of a wider range of stakeholders (e.g., policy makers, nongovernmental organizations, industry representatives) . In this report we present an overview of the results of four workshops held in western, northern, central/eastern, and southern regions of Europe in 2004. Overall, workshop experiences indicated that by actively involving participants in the planning of each meeting, AIRNET helped create an event that addressed participants' needs and interests. A wide range of communication formats used to discuss air pollution and health also helped stimulate active interaction among participants. Overall, the national workshops held by AIRNET offered a way to improve communication among the different stakeholders. Because a broad stakeholder involvement in decision making can positively affect the development of widely supported policies, such meetings should be continued for Europe and elsewhere.

Stakeholder needs for air pollution and health information.

Within the European Commission-supported thematic network project AIRNET, a stakeholder survey was performed to identify key questions and issues of concern for end users regarding air pollution and health information. On the whole, survey respondents typically asked general questions concerning air pollution and health (i.e., regarding the type of pollutant, emission sources, monitoring, and health impact). Furthermore, an overwhelming response across all stakeholder categories was not the unavailability of information sources to inform policy, but the lack of time available to read and absorb all the information. Overall, the respondents expressed their preference for information that is (1) presented as short and clear overviews, (2) ready for policy use by including a practical linkage between the research findings and implementation of public protection, and (3) in a format easily passed on to others.