Interventions to improve the uptake of screening across a range of conditions in Ethnic Minority Groups: a systematic review.

BACKGROUND: Screening programmes are well established in cancer, and are now being implemented in other conditions. An effective screening programme leads to early disease detection and improved outcomes but its impact is dependent on the quality of the test and the proportion of the target population participating. A further consideration is that uptake of screening by minority groups is low. PURPOSE: To determine which interventions have successfully increased screening uptake amongst minorities. DATA SOURCES: Medline, Cochrane database and the grey literature were searched from 1990 to 1st March 2016. STUDY SELECTION: Fifty-five English language studies that assessed uptake of screening in any minority population in the country of study aged over 18 years and that included a comparison arm. DATA EXTRACTION: Independent data extraction was undertaken by two researchers (CK and MP), using a predesigned data extraction form (DEF) which assisted retrieval of the core contents of each study and the organisation of material. DATA SYNTHESIS: Evidence was organised by screening test and type of intervention. Two authors (CK and MP) extracted data into evidence tables to enable comparison of study characteristics and findings. The heterogeneity of methods precluded a meta-analysis thus results are descriptive. Evidence was also assessed, using the Cochrane Collaboration risk of bias tables. RESULTS: This systematic review appraises data from international studies on a variety of minority groups, interventions and screening programmes providing a narrative review of their success and limitations.

Leadership for Knowledge Translation: The Case of CLAHRCs.

Calls for successful knowledge translation (KT) in health care have multiplied over recent years. The National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) program is a policy initiative in the United Kingdom aimed at speeding-up the translation of research into health care practice. Using multiple qualitative research methods and drawing on the ongoing processes used by individuals to interpret and contextualize information, we explore how new organizational forms for KT bridge the gap between research and practice. We pay particular attention to the relationship between the organization and practices of KT and leadership. Our empirical data demonstrate how the relationship between leadership and KT shifted over time from a push model where the authoritarian top-down leadership team set outcome measures by which to judge KT performance to one which aimed to distribute leadership capacity across a wide range of stakeholders in health and social care systems. The relationship between the organization and practices of KT and leadership is affected by local contextual influences on policies directed at increasing the uptake of research in clinical practice. Policy makers and service leaders need to recognize that more dispersed type of leadership is needed to accommodate the idiosyncratic nature of collective action.

The effect of telecare on the quality of life and psychological well-being of elderly recipients of social care over a 12-month period: the Whole Systems Demonstrator cluster randomised trial.

BACKGROUND: home-based telecare (TC) is utilised to manage risks of independent living and provide prompt emergency responses. This study examined the effect of TC on health-related quality of life (HRQoL), anxiety and depressive symptoms over 12 months in patients receiving social care. DESIGN: a study of participant-reported outcomes [the Whole Systems Demonstrator (WSD) Telecare Questionnaire Study; baseline n = 1,189] was nested in a pragmatic cluster-randomised trial of TC (the WSD Telecare trial), held across three English Local Authorities. General practice (GP) was the unit of randomisation and TC was compared with usual care (UC). METHODS: participant-reported outcome measures were collected at baseline, short-term (4 months) and long-term (12 months) follow-up, assessing generic HRQoL, anxiety and depressive symptoms. Primary intention-to-treat analyses tested treatment effectiveness and were conducted using multilevel models to control for GP clustering and covariates for participants who completed questionnaire measures at baseline assessment plus at least one other assessment (n = 873). RESULTS: analyses found significant differences between TC and UC on Short Form-12 mental component scores (P < 0.05), with parameter estimates indicating being a member of the TC trial-arm increases mental component scores (UC-adjusted mean = 40.52; TC-adjusted mean = 43.69). Additional significant analyses revealed, time effects on EQ5D (decreasing over time) and depressive symptoms (increasing over time). CONCLUSIONS: TC potentially contributes to the amelioration in the decline in users' mental HRQoL over a 12-month period. TC may not transform the lives of its users, but it may afford small relative benefits on some psychological and HRQOL outcomes relative to users who only receive UC. International Standard Randomised Controlled Trial Number Register: ISRCTN 43002091.

Effect of telecare on use of health and social care services: findings from the Whole Systems Demonstrator cluster randomised trial.

OBJECTIVE: to assess the impact of telecare on the use of social and health care. Part of the evaluation of the Whole Systems Demonstrator trial. PARTICIPANTS AND SETTING: a total of 2,600 people with social care needs were recruited from 217 general practices in three areas in England. DESIGN: a cluster randomised trial comparing telecare with usual care, general practice being the unit of randomisation. Participants were followed up for 12 months and analyses were conducted as intention-to-treat. DATA SOURCES: trial data were linked at the person level to administrative data sets on care funded at least in part by local authorities or the National Health Service. MAIN OUTCOME MEASURES: the proportion of people admitted to hospital within 12 months. Secondary endpoints included mortality, rates of secondary care use (seven different metrics), contacts with general practitioners and practice nurses, proportion of people admitted to permanent residential or nursing care, weeks in domiciliary social care and notional costs. RESULTS: 46.8% of intervention participants were admitted to hospital, compared with 49.2% of controls. Unadjusted differences were not statistically significant (odds ratio: 0.90, 95% CI: 0.75-1.07, P = 0.211). They reached statistical significance after adjusting for baseline covariates, but this was not replicated when adjusting for the predictive risk score. Secondary metrics including impacts on social care use were not statistically significant. CONCLUSIONS: telecare as implemented in the Whole Systems Demonstrator trial did not lead to significant reductions in service use, at least in terms of results assessed over 12 months.

Unpacking COVID-19 and conspiracy theories in the UK black community.

OBJECTIVES: Conspiracy theories are associated with significant COVID-19 health consequences including lower engagement with protective behaviours. This study uses sensemaking theory, a process of constructing meanings through interpersonal exchanges that enable people to interpret their world to explain the theoretical process underlying the development of conspiratorial beliefs around COVID-19 within Black African and Caribbean communities in the UK. DESIGN: Qualitative, in-depth interviews were used. METHODS: Twenty-eight members of the communities were recruited: semi-structured interviews were analysed using grounded theory. RESULTS: Our findings provide an explanation of how an environment of crisis combined with current and historical mistrust, perceived injustice and inequality provided a context in which alternative conspiracy narratives could thrive. The nature of these conspiratorial beliefs made more sense to many of our respondent's than institutional sources (such as the UK Government). Critically, these alternative beliefs helped respondents shape their decision-making, leading to non-engagement with COVID protective behaviours. CONCLUSIONS: We conclude that the uncertainty of the pandemic, combined with historical and contemporary perceived injustice and mistrust, and a lack of specific identity-aligned messaging, created a perfect environment for conspiratorial sense-making to thrive. This alternative sensemaking was inconsistent with the health-protection messaging espoused by the Government. To ensure all groups in society are protected, and for health promotion messages to take purchase, the experiences of different target audiences must be taken into account, with sensemaking anchored in lived experience.

Exploring awareness and prevalence of chronic viral hepatitis in a UK based Nepali population - lessons learned for future models in engaging migrant communities.

INTRODUCTION: The burden of chronic viral hepatitis (CVH) in the UK Nepali population is unknown. We aimed to determine knowledge of liver disease (LD) and prevalence of CVH in this community. METHODS: This was a mixed method (qualitative and quantitative) study guided by a multidisciplinary stakeholder group. Focus groups (FG) led by Nepali community leaders explored LD knowledge. Thereafter, a prospective community-based cohort study utilising dried-blood spot testing was conducted. Thematic analysis explored FG data with categorical data analysed with Excel and R Studio. RESULTS: FG data showed a lack of LD knowledge, with conflict between the roles of traditional and modern practices; 1,005 participants (525 male, 480 female) were tested for CVH, with a mean age of 63 years (range:19-86). Rates of CVH infection were low: 0.3% had current hepatitis B, with no active hepatitis C. DISCUSSION: Key drivers for enthusiastic participation were development of peer support networks and advisory groups to disseminate information, including hepatitis B vaccine recommendations.

An organisational analysis of the implementation of telecare and telehealth: the whole systems demonstrator.

BACKGROUND: To investigate organisational factors influencing the implementation challenges of redesigning services for people with long term conditions in three locations in England, using remote care (telehealth and telecare). METHODS: Case-studies of three sites forming the UK Department of Health's Whole Systems Demonstrator (WSD) Programme. Qualitative research techniques were used to obtain data from various sources, including semi-structured interviews, observation of meetings over the course programme and prior to its launch, and document review. Participants were managers and practitioners involved in the implementation of remote care services. RESULTS: The implementation of remote care was nested within a large pragmatic cluster randomised controlled trial (RCT), which formed a core element of the WSD programme. To produce robust benefits evidence, many aspect of the trial design could not be easily adapted to local circumstances. While remote care was successfully rolled-out, wider implementation lessons and levels of organisational learning across the sites were hindered by the requirements of the RCT. CONCLUSIONS: The implementation of a complex innovation such as remote care requires it to organically evolve, be responsive and adaptable to the local health and social care system, driven by support from front-line staff and management. This need for evolution was not always aligned with the imperative to gather robust benefits evidence. This tension needs to be resolved if government ambitions for the evidence-based scaling-up of remote care are to be realised.

Exploring barriers to participation and adoption of telehealth and telecare within the Whole System Demonstrator trial: a qualitative study.

BACKGROUND: Telehealth (TH) and telecare (TC) interventions are increasingly valued for supporting self-care in ageing populations; however, evaluation studies often report high rates of non-participation that are not well understood. This paper reports from a qualitative study nested within a large randomised controlled trial in the UK: the Whole System Demonstrator (WSD) project. It explores barriers to participation and adoption of TH and TC from the perspective of people who declined to participate or withdrew from the trial. METHODS: Qualitative semi-structured interviews were conducted with 22 people who declined to participate in the trial following explanations of the intervention (n = 19), or who withdrew from the intervention arm (n = 3). Participants were recruited from the four trial groups (with diabetes, chronic obstructive pulmonary disease, heart failure, or social care needs); and all came from the three trial areas (Cornwall, Kent, east London). Observations of home visits where the trial and interventions were first explained were also conducted by shadowing 8 members of health and social care staff visiting 23 people at home. Field notes were made of observational visits and explored alongside interview transcripts to elicit key themes. RESULTS: Barriers to adoption of TH and TC associated with non-participation and withdrawal from the trial were identified within the following themes: requirements for technical competence and operation of equipment; threats to identity, independence and self-care; expectations and experiences of disruption to services. Respondents held concerns that special skills were needed to operate equipment but these were often based on misunderstandings. Respondents' views were often explained in terms of potential threats to identity associated with positive ageing and self-reliance, and views that interventions could undermine self-care and coping. Finally, participants were reluctant to risk potentially disruptive changes to existing services that were often highly valued. CONCLUSIONS: These findings regarding perceptions of potential disruption of interventions to identity and services go beyond more common expectations that concerns about privacy and dislike of technology deter uptake. These insights have implications for health and social care staff indicating that more detailed information and time for discussion could be valuable especially on introduction. It seems especially important for potential recipients to have the opportunity to discuss their expectations and such views might usefully feed back into design and implementation.

'It's possibly made us feel a little more alienated': How people from ethnic minority communities conceptualise COVID-19 and its influence on engagement with testing.

OBJECTIVES: The cultural beliefs, practices and experiences of ethnic minority groups, alongside structural inequalities and the political economy play a critical, but overlooked role in health promotion. This study aimed to understand how ethnic minority groups in the United Kingdom conceptualised COVID-19 and how this influenced engagement in testing. METHOD: Black (African and Caribbean) and South Asian (Indian, Pakistani and Bangladeshi) community members were purposefully recruited from across the UK. Fifty-seven semi-structured interviews were conducted and analysed using principles of grounded theory. RESULTS: We found that people of Black and South Asian ethnicity conceptualised COVID-19 as a disease that makes them visible to others outside their community and was seen as having more severe risk and suffering worse consequences, resulting in fear, stigmatisation and alienation. Views about COVID-19 were embedded in cultural beliefs, relating to culturally specific ideas around disease, such as ill-health being God's will. Challenges brought about by the pandemic were conceptualised as one of many struggles, with the saliency of the virus contextualised against life experiences. These themes and others influenced engagement with COVID-19 testing. Testing was less about accessing timely and effective treatment for themselves and more about acting to protect the family and community. Testing symbolised a loss of income, anxiety and isolation, accentuated by issues of mistrust of the system and not being valued, or being treated unfairly. CONCLUSION: Health communications should focus on counterbalancing the mistrust, alienation and stigmatisation that act as barriers to testing, with trust built using local credible sources.

A comprehensive evaluation of the impact of telemonitoring in patients with long-term conditions and social care needs: protocol for the whole systems demonstrator cluster randomised trial.

BACKGROUND: It is expected that increased demands on services will result from expanding numbers of older people with long-term conditions and social care needs. There is significant interest in the potential for technology to reduce utilisation of health services in these patient populations, including telecare (the remote, automatic and passive monitoring of changes in an individual's condition or lifestyle) and telehealth (the remote exchange of data between a patient and health care professional). The potential of telehealth and telecare technology to improve care and reduce costs is limited by a lack of rigorous evidence of actual impact. METHODS/DESIGN: We are conducting a large scale, multi-site study of the implementation, impact and acceptability of these new technologies. A major part of the evaluation is a cluster-randomised controlled trial of telehealth and telecare versus usual care in patients with long-term conditions or social care needs. The trial involves a number of outcomes, including health care utilisation and quality of life. We describe the broad evaluation and the methods of the cluster randomised trial DISCUSSION: If telehealth and telecare technology proves effective, it will provide additional options for health services worldwide to deliver care for populations with high levels of need. TRIAL REGISTRATION: Current Controlled Trials ISRCTN43002091.

Improving uptake of hepatitis B and hepatitis C testing in South Asian migrants in community and faith settings using educational interventions-A prospective descriptive study.

BACKGROUND: Chronic viral hepatitis (CVH) is a leading contributor to the UK liver disease epidemic, with global migration from high prevalence areas (e.g., South Asia). Despite international guidance for testing high-risk groups in line with elimination targets, there is no consensus on how to achieve this. The objectives of this study were to assess the following: (1) the feasibility of recruiting South Asian migrants to view an educational film on CVH, (2) the effectiveness of the film in promoting testing and increasing knowledge of CVH, and (3) the methodological issues relevant to scale-up to a randomized controlled trial. METHODS: South Asian migrants were recruited to view the film (intervention) in community venues (primary care, religious, community), with dried blood spot CVH testing offered immediately afterwards. Pre/post-film questionnaires assessed the effectiveness of the intervention. RESULTS: Two hundred and nineteen first-generation migrants ≥18 years of age (53% female) were recruited to view the film at the following sites: religious, n = 112 (51%), community n = 98 (45%), and primary care, n = 9 (4%). One hundred and eighty-four (84%) underwent CVH testing; hepatitis B core antibody or hepatitis C antibody positivity demonstrated exposure in 8.5%. Pre-intervention (n = 173, 79%) and post-intervention (n = 154, 70%) questionnaires were completed. CONCLUSIONS: This study demonstrated the feasibility of recruiting first-generation migrants to view a community-based educational film promoting CVH testing in this higher risk group, confirming the value of developing interventions to facilitate the global World Health Organization plan for targeted case finding and elimination, and a future randomized controlled trial. We highlight the importance of culturally relevant interventions including faith and culturally sensitive settings, which appear to minimize logistical issues and effectively engage minority groups, allowing ease of access to individuals 'at risk'.

Electronic Consultation in Primary Care Between Providers and Patients: Systematic Review.

BACKGROUND: Governments and health care providers are keen to find innovative ways to deliver care more efficiently. Interest in electronic consultation (e-consultation) has grown, but the evidence of benefit is uncertain. OBJECTIVE: This study aimed to assess the evidence of delivering e-consultation using secure email and messaging or video links in primary care. METHODS: A systematic review was conducted on the use and application of e-consultations in primary care. We searched 7 international databases (MEDLINE, EMBASE, CINAHL, Cochrane Library, PsycINFO, EconLit, and Web of Science; 1999-2017), identifying 52 relevant studies. Papers were screened against a detailed inclusion and exclusion criteria. Independent dual data extraction was conducted and assessed for quality. The resulting evidence was synthesized using thematic analysis. RESULTS: This review included 57 studies from a range of countries, mainly the United States (n=30) and the United Kingdom (n=13). There were disparities in uptake and utilization toward more use by younger, employed adults. Patient responses to e-consultation were mixed. Patients reported satisfaction with services and improved self-care, communication, and engagement with clinicians. Evidence for the acceptability and ease of use was strong, especially for those with long-term conditions and patients located in remote regions. However, patients were concerned about the privacy and security of their data. For primary health care staff, e-consultation delivers challenges around time management, having the correct technological infrastructure, whether it offers a comparable standard of clinical quality, and whether it improves health outcomes. CONCLUSIONS: E-consultations may improve aspects of care delivery, but the small scale of many of the studies and low adoption rates leave unanswered questions about usage, quality, cost, and sustainability. We need to improve e-consultation implementation, demonstrate how e-consultations will not increase disparities in access, provide better reassurance to patients about privacy, and incorporate e-consultation as part of a manageable clinical workflow.

Genetic testing and the relationship between specific and general self-efficacy.

The study examined the extent to which variations in health-specific self-efficacy could affect general self-efficacy. In a repeated measures design, 300 participants were administered an efficacy questionnaire, before and after an alleged news report, aimed at increasing or decreasing self-efficacy over genetic-testing decision making. The results found that self-efficacy over testing was significantly reduced after reading the negative news report in those participants who felt personal efficacy over testing decisions was important. Levels of general self-efficacy were also significantly decreased. The findings suggest that being denied control over a specific area of self-efficacy can have a wider impact, with a lack of perceived efficacy over testing decision making adversely impacting on levels of general well-being. The wider implications of this generalization effect and the processes involved in efficacy generalization are discussed.

The importance of role sending in the sensemaking of change agent roles.

PURPOSE: The purpose of this paper is to investigate what happens when a lack of role-sending results in ambiguous change agent roles during a large scale organisational reconfiguration. The authors consider the role of sensemaking in resolving role ambiguity of middle manager change agents and the consequences of this for organisational restructuring. DESIGN/METHODOLOGY/APPROACH: Data were collected from a case study analysis of significant organisational reconfiguration across a local National Health Service Trust in the UK. Data consists of 82 interviews, complemented by analysis of over 100 documents and field notes from 51 hours of observations collected over five phases covering a three year period before, during and after the reconfiguration. An inductive qualitative analysis revealed the sensemaking processes by which ambiguity in role definition was resolved. FINDINGS: The data explains how change agents collectively make sense of a role in their own way, drawing on their own experiences and views as well as cues from other organisational members. The authors also identified the organisational outcomes which resulted from this freedom in sensemaking. This study demonstrates that by leaving too much flexibility in the definition of the role, agents developed their own sensemaking which was subsequently very difficult to manipulate. PRACTICAL IMPLICATIONS: In creating new roles, management first needs to have a realistic vision of the task and roles that their agents will perform, and second, to communicate these expectations to both those responsible for recruiting these roles and to the agents themselves. ORIGINALITY/VALUE: Much of the focus in sensemaking research has been on the importance of change agents' sensemaking of the change but there has been little focus on how change agents sensemake their own role in the change.

Investigating healthcare IT innovations: a "conceptual blending" approach.

PURPOSE: The purpose of this paper is to better understand how and why adoption and implementation of healthcare IT innovations occur. The authors examine two IT applications, computerised physician order entry (CPOE) and picture archiving and communication systems (PACS) at the meso and micro levels, within the context of the National Programme for IT in the English National Health Service (NHS). DESIGN/METHODOLOGY/APPROACH: To analyse these multi-level dynamics, the authors blend Rogers' diffusion of innovations theory (DoIT) with Webster's sociological critique of technological innovation in medicine and healthcare systems to illuminate a wider range of interacting factors. Qualitative data collected between 2004 and 2006 uses semi-structured, in-depth interviews with 72 stakeholders across four English NHS hospital trusts. FINDINGS: Overall, PACS was more successfully implemented (fully or partially in three out of four trusts) than CPOE (implemented in one trust only). Factors such as perceived benefit to users and attributes of the application - in particular speed, ease of use, reliability and flexibility and levels of readiness - were highly relevant but their influence was modulated through interaction with complex structural and relational issues. PRACTICAL IMPLICATIONS: Results reveal that combining contextual system level theories with DoIT increases understanding of real-life processes underpinning implementation of IT innovations within healthcare. They also highlight important drivers affecting success of implementation, including socio-political factors, the social body of practice and degree of "co-construction" between designers and end-users. ORIGINALITY/VALUE: The originality of the study partly rests on its methodological innovativeness and its value on critical insights afforded into understanding complex IT implementation programmes.

Evidence into practice: a theory based study of achieving national health targets in primary care.

RATIONALE, AIMS AND OBJECTIVES: This study investigates reasons why general practices achieve nationally set milestones to different extents. It compares the beliefs, self-reported behaviours and organizational context of general practitioners (GPs) who have been successful in achieving milestones set out in the UK's National Service Framework (NSF) for Coronary Heart Disease (CHD) with those who have been less successful. METHODS: Sixteen London GPs were interviewed, eight 'high implementers' (having met five or more of six CHD NSF milestones) and eight 'low implementers' (having met one or two milestones). Practices were matched for practice size across the groups as far as possible. The interview consisted of open-ended questions, based on theoretical constructs identified as key to implementation research in a previous project. Interviews were transcribed and analysed with Interpretative Phenomenological Analysis (IPA). RESULTS: There were three main areas that differentiated high and low implementers: beliefs about evidence-based practice, control over professional practice and consequences of achieving the milestones. Low implementers: (i) expressed less belief in evidence-based guidelines as the basis of their practice; (ii) were more concerned about their lack of control over the development and implementation of the guidelines (lack of ownership), and over their own practice (lack of autonomy); and (iii) perceived more negative consequences and fewer positive consequences, both for themselves and for patient care. CONCLUSIONS: This study demonstrates the application of psychological theory in trying to understand and improve professional practice. The results suggest areas that could be targeted in developing interventions to increase guideline implementation in primary care.

Experiences of front-line health professionals in the delivery of telehealth: a qualitative study.

BACKGROUND: Telehealth is an emerging field of clinical practice but current UK health policy has not taken account of the perceptions of front-line healthcare professionals expected to implement it. AIM: To investigate telehealth care for people with long-term conditions from the perspective of the front-line health professional. DESIGN AND SETTING: A qualitative study in three sites within the UK (Kent, Cornwall, and the London Borough of Newham) and embedded in the Whole Systems Demonstrator evaluation, a large cluster randomised controlled trial of telehealth and telecare for patients with long-term and complex conditions. METHOD: Semi-structured qualitative interviews with 32 front-line health professionals (13 community matrons, 10 telehealth monitoring nurses and 9 GPs) involved in the delivery of telehealth. Data were analysed using a modified grounded theory approach. RESULTS: Mixed views were expressed by front-line professionals, which seem to reflect their levels of engagement. It was broadly welcomed by nursing staff as long as it supplemented rather than substituted their role in traditional patient care. GPs held mixed views; some gave a cautious welcome but most saw telehealth as increasing their work burden and potentially undermining their professional autonomy. CONCLUSION: Health care professionals will need to develop a shared understanding of patient self-management through telehealth. This may require a renegotiation of their roles and responsibilities.

Stimulating whole system redesign: Lessons from an organizational analysis of the Whole System Demonstrator programme.

OBJECTIVES: Whole system integration of health and social care has been positioned as key to improving care, increasing efficiency and controlling costs. However, evidence for the benefits of whole system integration is scarce. Drawing on organizational theory, this study uses the implementation of remote care services, viewed as an enabler for whole system working, to explore the reality of achieving this policy objective. METHODS: Qualitative, longitudinal data were collected across nine UK sites adopting remote care over three years. Three sites formed the Department of Health's Whole Systems Demonstrator (WSD) programme for remote care. In addition, the implementation of remote care was explored in six other sites unconstrained by the randomized control trial procedures of the WSD programme. The methods were ethnographic (including 235 hours of observations and 184 interviews). Participants were health and social care staff and Government policy makers. RESULTS: Remote care did not lead to system redesign; however, local 'ownership' of new services did lead to more collaborative practices across the care system. Lack of integration was an enduring and endemic challenge across all sites, relating to differences in statutory responsibilities, absence of shared budgets and hybrid organizational roles, differences in work practices and organizational philosophies, and ambiguity around what 'whole system working' actually entailed. CONCLUSIONS: Policy initiatives like the WSD programme provide opportunities to phase in collaborative practices and create an awareness of the need for joint working. However, the progress observed suggests that the concept of whole system redesign around remote care is currently unrealistic.