Exploring how to improve the involvement of Polish and South Asian communities around big data research. A qualitative study using COM-B model.

Introduction: Involving public contributors helps researchers to ensure that public views are taken into consideration when designing and planning research, so that it is person-centred and relevant to the public. This paper will consider public involvement in big data research. Inclusion of different communities is needed to ensure everyone's voice is heard. However, there remains limited evidence on how to improve the involvement of seldom-heard communities in big data research. Objectives: This study aims to understand how South Asians and Polish communities in the UK can be encouraged to participate in public involvement initiatives in big data research. Methods: Forty interviews were conducted with Polish (n=20) and South Asian (n=20) participants on Zoom. The participants were living in the United Kingdom and had not previously been involved as public contributors. Transcribed interviews were analysed using reflexive thematic analysis. Results: We identified eight themes. The 'happy to reuse data' theme sets the scene by exploring our participants' views towards big data research and under what circumstances they thought that data could be used. The remaining themes were mapped under the capability-opportunity-motivation-behaviour (COM-B) model, as developed by Michie and colleagues. This allowed us to discuss multiple factors that could influence people's willingness to become public contributors. Conclusions: Our study is the first to explore how to improve the involvement and engagement of seldom-heard communities in big data research using the COM-B model. The results have the potential to support researchers who want to identify what can influence members of the public to be involved. By using the COM-B model, it is possible to determine what measures could be implemented to better engage these communities.

The perception of risk in contracting and spreading COVID-19 amongst individuals, households and vulnerable groups in England: a longitudinal qualitative study.

BACKGROUND: Social distancing restrictions to manage the COVID-19 pandemic were put in place from March 2020 in the United Kingdom (UK), with those classed as "highly clinically vulnerable" advised to shield entirely and remain at home. However, personal risk perception has been shown to comprise of various elements beyond those outlined in the national pandemic guidance. It is unclear whether those deemed COVID-19 vulnerable identified as high-risk to COVID-19 and thus complied with the relevant advice. The aim of this research is to explore the perception of risk in catching and spreading COVID-19, amongst individuals from individual households, and vulnerable groups in a region of the UK. METHODS: Two individual, semi-structured interviews were conducted, four-weeks apart, with adults living in households in the Liverpool City Region. At the follow-up interview, participants were given the option of using photo-elicitation to guide the discussion. Reflexive thematic analysis was employed to conceptualise themes. The qualitative analysis was underpinned with symbolic interactionism. RESULTS: Twenty-seven participants (13:14 males:females, and 20 with a vulnerable risk factor to COVID-19) completed a baseline interview, and 15 of these completed a follow-up interview four-weeks later. Following thematic analysis, two overarching themes were conceptualised, with subthemes discussed: theme 1) Confusion and trust in the risk prevention guidance; and theme 2) Navigating risk: compliance and non-compliance with public health guidance. CONCLUSION: Participants developed their own understanding of COVID-19 risk perception through personal experience and comparison with others around them, irrespective of vulnerability status. COVID-19 guidance was not complied with as intended by the government, and at times even rejected due to lack of trust. The format in which future pandemic guidance is conveyed must be carefully considered, and take into account individuals' experiences that may lead to non-compliance. The findings from our study can inform future public health policy and interventions for COVID-19 and future pandemics.

'To me, it's ones and zeros, but in reality that one is death': A qualitative study exploring researchers' experience of involving and engaging seldom-heard communities in big data research.

BACKGROUND: Big data research requires public support. It has been argued that this can be achieved by public involvement and engagement to ensure that public views are at the centre of research projects. Researchers should aim to include diverse communities, including seldom-heard voices, to ensure that a range of voices are heard and that research is meaningful to them. OBJECTIVE: We explored how researchers involve and engage seldom-heard communities around big data research. METHODS: This is a qualitative study. Researchers who had experience of involving or engaging seldom-heard communities in big data research were recruited. They were based in England (n = 5), Scotland (n = 4), Belgium (n = 2) and Canada (n = 1). Twelve semistructured interviews were conducted on Zoom. All interviews were audio-recorded and transcribed, and we used reflexive thematic analysis to analyse participants' experiences. RESULTS: The analysis highlighted the complexity of involving and engaging seldom-heard communities around big data research. Four themes were developed to represent participants' experiences: (1) abstraction and complexity of big data, (2) one size does not fit all, (3) working in partnership and (4) empowering the public contribution. CONCLUSION: The study offers researchers a better understanding of how to involve and engage seldom-heard communities in a meaningful way around big data research. There is no one right approach, with involvement and engagement activities required to be project-specific and dependent on the public contributors, researchers' needs, resources and time available. PATIENT AND PUBLIC INVOLVEMENT: Two public contributors are authors of the paper and they were involved in the study design, analysis and writing.

Cluster randomised control trial protocol for estimating the effectiveness and cost-effectiveness of a complex intervention to increase care home staff influenza vaccination rates compared to usual practice (FLUCARE).

The care home staff influenza vaccination rate in England is significantly lower than the 75% World Health Organisation recommendation. This represents a substantial potential for resident harm. Barriers to staff vaccination stem from individual and organisational levels. Existing interventions address some but not all barriers and are not underpinned by behavioural science theory. This study aims to estimate the effectiveness and cost-effectiveness of a theory-informed intervention to improve care home staff vaccination rates compared to routine practice.Set in care homes with both nursing and residential focus, and a range of ownership status, only homes providing long stay care to older people with a staff vaccination rate below 40% are eligible to participate. Participation expressions of interest will be sought using a variety of approaches prior to seeking consent.The primary outcome measure is the proportion of staff vaccinated at 6 months, with secondary outcome measures being proportion vaccinated at 3 months, numbers of staff sick days, general practitioner and nurse visits to care home, care home resident hospitalisations and mortality.Based on the assumptions that the mean cluster (care home) size is 54 staff, a coefficient of variation of 0.48, control vaccination rate is 55%, intervention 75%, intra-cluster correlation coefficient of 0.2 and with 90% power, and 20% attrition, we require 39 care homes per arm.Blocked randomisation will be at the level of care home, stratified by the proportion of non-white care home staff, and implemented by Norwich Clinical Trials Unit.The intervention comprises co-designed information videos and posters, provision of in-house staff vaccination clinics, and incentive scheme and monthly data collection on trial outcomes. Beyond usual practice, the control arm will additionally contribute monthly data.Data will be collected at the start, monthly and at 6 months, and analysis will be blind to allocation. Statistical analysis will use the intention-to-treat principle with the difference in vaccination rates between groups compared using a random effect logistic regression model at the staff-level.This will be the first study to use a theory-informed intervention designed to comprehensively address identified barriers to care home staff influenza vaccination.Trial registration: ISRCTN ISRCTN22729870 . Registered on 24 August 22. Secondary identifiers: R209939, IRAS 316820, CPMS 53812.

Impact of local air quality management policies on emergency hospitalisations for respiratory conditions in the North West Coast region of England: a longitudinal controlled ecological study.

BACKGROUND: Air quality is monitored at a local level in the UK as part of the Local Air Quality Management (LAQM) system. If air quality objectives within an area are not achieved an Air Quality Management Area (AQMA) is declared and action plan developed. The efficacy of this system in reducing air pollution has increasingly come into question, however very little is known about its impact on health or health inequalities. We therefore investigated the effect of declaring an AQMA on emergency hospitalisations for respiratory conditions in the North West Coast region of England, and examined whether the effect differed between more compared to less deprived neighbourhoods. METHODS: This longitudinal controlled ecological study analysed neighbourhoods located within or touching the boundaries of AQMAs declared in the North West Coast region between 2006 and 2016. Each of these intervention neighbourhoods were matched with five control neighbourhoods which had never been located within/touching an AQMA boundary. Difference-in-differences methods were used to compare the change in hospitalisation rates in the intervention neighbourhoods to the change in hospitalisation rates in the matched control neighbourhoods, before and after the declaration of an AQMA. RESULTS: In total, 108 intervention neighbourhoods and 540 control neighbourhoods were analysed over the period 2005-2017, giving a total sample size of 8424 neighbourhood-years. Emergency hospitalisations for respiratory conditions decreased in the intervention neighbourhoods by 158 per 100,000 per year [95% CI 90 to 227] after an AQMA was declared relative to the control neighbourhoods. There was a larger decrease in hospitalisation rates following the declaration of an AQMA in more compared to less income deprived neighbourhoods. CONCLUSIONS: Our results suggest the LAQM system has contributed to a reduction in emergency hospitalisations for respiratory conditions, and may represent an effective strategy to reduce inequalities in health. These findings highlight the importance of measuring the success of air quality policies not just in terms of air pollution but also in terms of population health.

Public involvement and engagement in big data research: protocol for a scoping review and a systematic review of delivery and effectiveness of strategies for involvement and engagement.

INTRODUCTION: Big data research has grown considerably over the last two decades. This presents new ethical challenges around consent, data storage and anonymisation. Big data research projects require public support to succeed and it has been argued that one way to achieve this is through public involvement and engagement. To better understand the role public involvement and engagement can play in big data research, we will review the current literature. This protocol describes the planned review methods. METHODS AND ANALYSIS: Our review will be conducted in two stages. In the first stage, we will conduct a scoping review using Arksey and O'Malley methodology to comprehensively map current evidence on public involvement and engagement in big data research. Databases (CINAHL, Health Research Premium Collection, PubMed, Scopus, Web of Science) and grey literature will be searched for eligible papers. We provide a narrative description of the results based on a thematic analysis. In the second stage, out of papers found in the scoping review which discuss involvement and engagement strategies, we will conduct a systematic review following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, exploring the delivery and effectiveness of these strategies. We will conduct a qualitative synthesis. Relevant results from the quantitative studies will be extracted and placed under qualitative themes. Individual studies will be appraised through Mixed Methods Appraisal Tool (MMAT), we will then assess the overall confidence in each finding through Confidence in the Evidence from Reviews of Qualitative research (GRADE-CERQual). Results will be reported in a thematic and narrative way. ETHICS AND DISSEMINATION: This protocol sets out how the review will be conducted to ensure rigour and transparency. Public advisors were involved in its development. Ethics approval is not required. Review findings will be presented at conferences and published in peer-reviewed journals.

The value of involving patients and public in health services research and evaluation: a qualitative study.

BACKGROUND: Public and Patient Involvement, Engagement and Participation research encompasses working with patients/service users (people with a medical condition receiving health service treatment), public members, caregivers and communities (who use services or care for patients). The Partner Priority Programme (PPP) was developed by the National Health Service [NHS] and National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care [NIHR CLAHRC] NWC to share information and experience on evaluating new services being offered to patients that were seeking to reduce health inequalities, improve people's health and wellbeing and reduce emergency hospital admissions. This paper seeks to explore an approach developed for involving the public as equal partners within the evaluation and decision-making processes of health and social care services research. The aim of this study was to identify how public advisors were included, the impact of their involvement, and how change occurred within the organisations following their involvement. METHODS: A qualitative approach using focus group discussions was adopted to explore the experiences of two cohorts of participants involved in PPP project teams. Focus groups were held with public advisors (n = 9), interns (n = 9; staff or public who received a funded internship for a PPP project), NHS and Local Authority initiative leads (n = 10), and academic facilitators (n = 14). These were transcribed verbatim and analysed using a thematic approach. RESULTS: Thirty-two public advisors were recruited to support 25 PPP projects across the Collaboration for Leadership in Applied Health Research and CLAHRC North West Coast [NWC] partner organisations. Three inter-related themes were conceptualised: 1)"Where it all started - involving public advisors" identified the varying journeys to recruitment and experiences of becoming a public advisor; 2)"Steps toward active involvement and engagement" related to public advisors becoming core team members; and 3) "Collaborative working to enhance public and patient involvement" relayed how projects identified the benefits of working jointly with the public advisors, particularly for those who had not experienced this style of working before. CONCLUSIONS: The findings indicate that the PPP model is effective for embedding Public and Patient Involvement [PPI] within health services research, and recommends that PPI is integrated at the earliest opportunity within research projects and service evaluations through the use of support-led and facilitative programmes.

The purpose of involving the public and patients in research is to help them have a say in decisions about healthcare and enable patients or other people with relevant experience to contribute to how research is planned, carried out, and shared with a wider audience. The Partner Priority Programme (PPP) was developed by the National Health Service [NHS] and Local Authority partners to share information and experience on evaluating new services being offered to patients that were seeking to reduce health inequalities, improve people's health and wellbeing and reduce emergency hospital admissions. In this paper, we explore an approach we developed for involving public advisors (service users/patients, and caregivers) as equal partners within the evaluation and decision-making processes of health and social care services research. The aim of this study was to identify how public advisors were included, the impact of their involvement, and identify the changes organisations made as a result of public advisor involvement. Most projects had not included public advisors in their teams before and initially did not understand how to involve them. By attending scheduled meetings, they had time to learn how to engage with public advisors (and what methods to use to recruit them to be part of their teams). Participants also learned the benefits of including public advisors within their teams. With the help and support provided as part of the programme, public advisors seemed to grow in confidence and take part in teams as equal partners.

From fringe to centre-stage: experiences of mainstreaming health equity in a health research collaboration.

BACKGROUND: Action to address the structural determinants of health inequalities is prioritized in high-level initiatives such as the United Nations Sustainable Development Goals and many national health strategies. Yet, the focus of much local policy and practice is on behaviour change. Research shows that whilst lifestyle approaches can improve population health, at best they fail to reduce health inequalities because they fail to address upstream structural determinants of behaviour and health outcomes. In health research, most efforts have been directed at three streams of work: understanding causal pathways; evaluating the equity impact of national policy; and developing and evaluating lifestyle/behavioural approaches to health improvement. As a result, there is a dearth of research on effective interventions to reduce health inequalities that can be developed and implemented at a local level. OBJECTIVE: To describe an initiative that aimed to mainstream a focus on health equity in a large-scale research collaboration in the United Kingdom and to assess the impact on organizational culture, research processes and individual research practice. METHODS: The study used multiple qualitative methods including semi-structured interviews, focus groups and workshops (n = 131 respondents including Public Advisers, university, National Health Service (NHS), and local and document review. RESULTS: utilizing Extended Normalization Process Theory (ENPT) and gender mainstreaming theory, the evaluation illuminated (i) the processes developed by Collaboration for Leadership in Applied Health Research and Care North West Coast to integrate ways of thinking and acting to tackle the upstream social determinants of health inequities (i.e. to mainstream a health equity focus) and (ii) the factors that promoted or frustrated these efforts. CONCLUSIONS: Findings highlight the role of contextual factors and processes aimed at developing and implementing a robust strategy for mainstreaming health equity as building blocks for transformative change in applied health research.

Mainstreaming public involvement in a complex research collaboration: A theory-informed evaluation.

INTRODUCTION: There is an extensive literature on public involvement (PI) in research, but this has focused primarily on experiences for researchers and public contributors and factors enabling or restricting successful involvement in specific projects. There has been less consideration of a 'whole system' approach to embedding PI across an organization from governance structures through to research projects. OBJECTIVE: To investigate how a combination of two theoretical frameworks, one focused on mainstreaming and the other conceptualizing quality, can illuminate the embedding of positive and influential PI throughout a research organization. METHODS: The study used data from the evaluation of a large UK research collaboration. Primary data were collected from 131 respondents (including Public Advisers, university, NHS and local government staff) via individual and group interviews/workshops. Secondary sources included monitoring data and internal documents. FINDINGS: CLAHRC-NWC made real progress in mainstreaming PI. An organizational vision and infrastructure to embed PI at all levels were created, and the number and range of opportunities increased; PI roles became more clearly defined and increasingly public contributors felt able to influence decisions. However, the aspiration to mainstream PI throughout the collaboration was not fully achieved: a lack of staff 'buy-in' meant that in some areas, it was not experienced as positively or was absent. CONCLUSION: The two theoretical frameworks brought a novel perspective, facilitating the investigation of the quality of PI in structures and processes across the whole organization. We propose that combining these frameworks can assist the evaluation of PI research.

A systematic review of barriers and enablers to South Asian women's attendance for asymptomatic screening of breast and cervical cancers in emigrant countries.

OBJECTIVES: The aim of this review was to identify the cultural, social, structural and behavioural factors that influence asymptomatic breast and cervical cancer screening attendance in South Asian populations, in order to improve uptake and propose priorities for further research. DESIGN: A systematic review of the literature for inductive, comparative, prospective and intervention studies. We searched the following databases: MEDLINE/In-Process, Web of Science, EMBASE, SCOPUS, CENTRAL, CDSR, CINAHL, PsycINFO and PsycARTICLES from database inception to 23 January 2018. The review included studies on the cultural, social, structural and behavioural factors that influence asymptomatic breast and cervical cancer screening attendance and cervical smear testing (Papanicolaou test) in South Asian populations and those published in the English language. The framework analysis method was used and themes were drawn out following the thematic analysis method. SETTINGS: Asymptomatic breast or cervical screening. PARTICIPANTS: South Asian women, including Bangladeshi, Indian, Pakistani, Sri Lankan, Bhutanese, Maldivian and Nepali populations. RESULTS: 51 included studies were published between 1991 and 2018. Sample sizes ranged from 25 to 38 733 and participants had a mean age of 18 to 83 years. Our review showed that South Asian women generally had lower screening rates than host country women. South Asian women had poorer knowledge of cancer and cancer prevention and experienced more barriers to screening. Cultural practices and assumptions influenced understandings of cancer and prevention, emphasising the importance of host country cultures and healthcare systems. CONCLUSIONS: High-quality research on screening attendance is required using prospective designs, where objectively validated attendance is predicted from cultural understandings, beliefs, norms and practices, thus informing policy on targeting relevant public health messages to the South Asian communities about screening for cancer. PROSPERO REGISTRATION NUMBER: CSD 42015025284.