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  1. Article ; Online: Variable uptake of face masks could reinforce health inequalities.

    Robling, Michael R

    BMJ (Clinical research ed.)

    2020  Volume 369, Page(s) m2001

    MeSH term(s) Betacoronavirus ; COVID-19 ; Coronavirus Infections ; Health Status Disparities ; Humans ; Masks ; Pandemics ; Pneumonia, Viral ; SARS-CoV-2 ; Socioeconomic Factors
    Keywords covid19
    Language English
    Publishing date 2020-05-20
    Publishing country England
    Document type Letter ; Comment
    ZDB-ID 1362901-3
    ISSN 1756-1833 ; 0959-8154 ; 0959-8146 ; 0959-8138 ; 0959-535X ; 1759-2151
    ISSN (online) 1756-1833
    ISSN 0959-8154 ; 0959-8146 ; 0959-8138 ; 0959-535X ; 1759-2151
    DOI 10.1136/bmj.m2001
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  2. Article ; Online: Attitudes towards the collection and linkage of maltreatment data for research: A qualitative study.

    Moody, Gwenllian / Cannings-John, Rebecca / Hood, Kerenza / Robling, Michael

    International journal of population data science

    2022  Volume 7, Issue 1, Page(s) 1693

    Abstract: Introduction: Factors that affect public and professionals' attitudes towards the collection and linkage of health and other data have been explored in the literature. Thus far there has been no study exploring attitudes towards the collection of child ... ...

    Abstract Introduction: Factors that affect public and professionals' attitudes towards the collection and linkage of health and other data have been explored in the literature. Thus far there has been no study exploring attitudes towards the collection of child maltreatment data.
    Objectives: Our aim is to explore attitudes regarding the collection and linkage of maltreatment data for research.
    Methods: Participants included younger mothers, older mothers, care-experienced young people, and professionals who were responsible for recording child maltreatment data. Four face-to-face focus groups were conducted, one with younger mothers (n = 6), one with older mothers (n = 10), and two with care-experienced young people (n = 6 and n = 5). An online focus group was conducted with professionals (n = 10), two of whom additionally participated in telephone interviews. Transcribed audio-recorded data were inductively coded, a portion were double-coded by a second researcher, and thematically analysed.
    Results: Three major themes were identified. The first concerned issues of consent, specifically the conditions for providing consent and factors influencing this. The second concerned trust in data security and validity, the organisations and individuals providing and using the data, and how the information provided shapes attitudes. The third theme explored the benefits of research and the researchers' role in child protection. Participants wanted the choice of providing consent for data collection, especially when consenting on behalf of another, but there were concerns that maltreated children were unidentifiable in anonymised datasets. Care-experienced young people were concerned about data collection from Social Services records due to their sensitivity. There was a general lack of understanding about how research data is viewed and the accuracy of records.
    Conclusions: Novel findings in the study were strongly related to the sensitive nature of the topic. The findings may be particularly useful when designing research studies and participant materials and a co-productive approach to this should be taken.
    MeSH term(s) Adolescent ; Attitude ; Child ; Data Collection ; Focus Groups ; Humans ; Qualitative Research ; Trust
    Language English
    Publishing date 2022-01-26
    Publishing country Wales
    Document type Journal Article
    ISSN 2399-4908
    ISSN (online) 2399-4908
    DOI 10.23889/ijpds.v6i1.1693
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  3. Article ; Online: A DELPHI study priority setting the remaining challenges for the use of routinely collected data in trials: COMORANT-UK.

    Williams, Adam D N / Davies, Gwyneth / Farrin, Amanda J / Mafham, Marion / Robling, Michael / Sydes, Matthew R / Lugg-Widger, Fiona V

    Trials

    2023  Volume 24, Issue 1, Page(s) 243

    Abstract: Background: Researchers are increasingly seeking to use routinely collected data to support clinical trials. This approach has the potential to transform the way clinical trials are conducted in the future. The availability of routinely collected data ... ...

    Abstract Background: Researchers are increasingly seeking to use routinely collected data to support clinical trials. This approach has the potential to transform the way clinical trials are conducted in the future. The availability of routinely collected data for research, whether healthcare or administrative, has increased, and infrastructure funding has enabled much of this. However, challenges remain at all stages of a trial life cycle. This study, COMORANT-UK, aimed to systematically identify, with key stakeholders across the UK, the ongoing challenges related to trials that seek to use routinely collected data.
    Methods: This three-step Delphi method consisted of two rounds of anonymous web-based surveys and a virtual consensus meeting. Stakeholders included trialists, data infrastructures, funders of trials, regulators, data providers and the public. Stakeholders identified research questions or challenges that they considered were of particular importance and then selected their top 10 in the second survey. The ranked questions were taken forward to the consensus meeting for discussion with representatives invited from the stakeholder groups.
    Results: In the first survey, 66 respondents yielded over 260 questions or challenges. These were thematically grouped and merged into a list of 40 unique questions. Eighty-eight stakeholders then ranked their top ten from the 40 questions in the second survey. The most common 14 questions were brought to the virtual consensus meeting in which stakeholders agreed a top list of seven questions. We report these seven questions which are within the following domains: trial design, Patient and Public Involvement, trial set-up, trial open and trial data. These questions address both evidence gaps (requiring further methodological research) and implementation gaps (requiring training and/or service re-organisation).
    Conclusion: This prioritised list of seven questions should inform the direction of future research in this area and should direct efforts to ensure that the benefits in major infrastructure for routinely collected data are achieved and translated. Without this and future work to address these questions, the potential societal benefits of using routinely collected data to help answer important clinical questions will not be realised.
    MeSH term(s) Humans ; Delphi Technique ; Health Priorities ; Research Design ; Routinely Collected Health Data ; United Kingdom ; Clinical Trials as Topic
    Language English
    Publishing date 2023-03-30
    Publishing country England
    Document type Journal Article
    ZDB-ID 2040523-6
    ISSN 1745-6215 ; 1468-6694 ; 1745-6215
    ISSN (online) 1745-6215
    ISSN 1468-6694 ; 1745-6215
    DOI 10.1186/s13063-023-07251-x
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  4. Article ; Online: Identifying researcher learning needs to develop online training for UK researchers working with administrative data: CENTRIC training.

    Lugg-Widger, Fiona / Munnery, Kim / Townson, Julia / Trubey, Rob / Robling, Michael

    International journal of population data science

    2022  Volume 7, Issue 1, Page(s) 1712

    Abstract: Background: The use of administrative data in health and social science research continues to expand, with increased availability of data and interest from funders. Researchers, however, continue to experience delays in access, storage and sharing of ... ...

    Abstract Background: The use of administrative data in health and social science research continues to expand, with increased availability of data and interest from funders. Researchers, however, continue to experience delays in access, storage and sharing of administrative data. Training opportunities are limited and typically specific to individual data providers or focussed on the analytical aspects of working with administrative data. The CENTRIC study was funded by the Information Commissioners Office, with the aim of developing a broader training curriculum for researchers working with administrative data in the UK.
    Methods: A mixed-methods design informed curriculum content, including surveys with researchers, focus group discussions with data providers and workshops with members of the public. Researchers were identified from relevant administrative data networks and invited to participate in an online survey identifying training needs. Data providers were approached with a request to input to a face-to-face or online meeting with two members of the research team about their experiences of working with researchers. Data were analysed within the broad framework of the interview schedule, free text responses in the survey were analysed thematically.
    Results: 107 researchers responded to the online survey and four data providers participated in the focus groups. We identified five main themes, relating to research training needs for UK researchers working with administrative data: communication; timelines; changes & amendments; future-proofing applications; and, the availability of training and support. Data providers either provided additional evidence on these learning needs or ways to address identified challenges. Six modules were developed addressing these training needs. Quotes from the survey and focus groups are used anonymously in the online training modules.
    Conclusion: The CENTRIC online training curriculum was launched in September 2020 and is available, free of charge for UK researchers. CENTRIC specifically addresses commonly identified training needs of researchers working with administrative data.
    MeSH term(s) Communication ; Curriculum ; Humans ; Research Personnel ; Surveys and Questionnaires ; United Kingdom
    Language English
    Publishing date 2022-02-02
    Publishing country Wales
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ISSN 2399-4908
    ISSN (online) 2399-4908
    DOI 10.23889/ijpds.v6i1.1712
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  5. Article ; Online: The practicalities of adapting UK maternity clinical information systems for observational research: Experiences of the POOL study.

    Lugg-Widger, Fiona / Barlow, Christian / Cannings-John, Rebecca / Gale, Chris / Houlding, Nicola / Milton, Rebecca / Plachcinski, Rachel / Robling, Michael / Sanders, Julia

    International journal of population data science

    2023  Volume 8, Issue 1, Page(s) 2072

    Abstract: Background: Using routinely collected clinical data for observational research is an increasingly important method for data collection, especially when rare outcomes are being explored. The POOL study was commissioned to evaluate the safety of ... ...

    Abstract Background: Using routinely collected clinical data for observational research is an increasingly important method for data collection, especially when rare outcomes are being explored. The POOL study was commissioned to evaluate the safety of waterbirth in the UK using routine maternity and neonatal clinical data. This paper describes the design, rationale, set-up and pilot for this data linkage study using bespoke methods.
    Methods: Clinical maternity information systems hold many data items of value for research purposes, but often lack specific data items required for individual studies. This study used the novel method of amending an existing clinical maternity database for the purpose of collecting additional research data fields. In combination with the extraction of existing data fields, this maximised the potential use of existing routinely collected clinical data for research purposes, whilst reducing NHS staff data collection burden.Wellbeing Software
    Results: Twenty-six NHS sites were set-up over 27 months (January 2019 - April 2021). Twenty-four thousand maternity records were extracted from the one NHS site, pertaining to the period January 2015 to March 2019. Data field completeness for maternal and neonatal primary outcomes were mostly acceptable. Neonatal identifiers flowed to the National Neonatal Research Database for successful matching and linkage between maternity and neonatal unit records.
    Discussion: Piloting the data extraction and linkage highlighted the need for additional governance arrangements, training at NHS sites and new processes for the study team to ensure data quality and confidentiality are upheld during the study. Amending existing NHS electronic information systems and accessing clinical data at scale, is possible, but continues to be a time consuming and a technically challenging exercise.
    MeSH term(s) Infant, Newborn ; Infant ; Humans ; Female ; Pregnancy ; Data Collection/methods ; Natural Childbirth ; Data Accuracy ; Information Systems ; United Kingdom
    Language English
    Publishing date 2023-08-07
    Publishing country Wales
    Document type Journal Article
    ISSN 2399-4908
    ISSN (online) 2399-4908
    DOI 10.23889/ijpds.v8i1.2072
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  6. Article ; Online: Lessons learned from using linked administrative data to evaluate the Family Nurse Partnership in England and Scotland.

    Cavallaro, Francesca L / Cannings-John, Rebecca / Lugg-Widger, Fiona / Gilbert, Ruth / Kennedy, Eilis / Kendall, Sally / Robling, Michael / Harron, Katie L

    International journal of population data science

    2023  Volume 8, Issue 1, Page(s) 2113

    Abstract: Introduction: "Big data" - including linked administrative data - can be exploited to evaluate interventions for maternal and child health, providing time- and cost-effective alternatives to randomised controlled trials. However, using these data to ... ...

    Abstract Introduction: "Big data" - including linked administrative data - can be exploited to evaluate interventions for maternal and child health, providing time- and cost-effective alternatives to randomised controlled trials. However, using these data to evaluate population-level interventions can be challenging.
    Objectives: We aimed to inform future evaluations of complex interventions by describing sources of bias, lessons learned, and suggestions for improvements, based on two observational studies using linked administrative data from health, education and social care sectors to evaluate the Family Nurse Partnership (FNP) in England and Scotland.
    Methods: We first considered how different sources of potential bias within the administrative data could affect results of the evaluations. We explored how each study design addressed these sources of bias using maternal confounders captured in the data. We then determined what additional information could be captured at each step of the complex intervention to enable analysts to minimise bias and maximise comparability between intervention and usual care groups, so that any observed differences can be attributed to the intervention.
    Results: Lessons learned include the need for i) detailed data on intervention activity (dates/geography) and usual care; ii) improved information on data linkage quality to accurately characterise control groups; iii) more efficient provision of linked data to ensure timeliness of results; iv) better measurement of confounding characteristics affecting who is eligible, approached and enrolled.
    Conclusions: Linked administrative data are a valuable resource for evaluations of the FNP national programme and other complex population-level interventions. However, information on local programme delivery and usual care are required to account for biases that characterise those who receive the intervention, and to inform understanding of mechanisms of effect. National, ongoing, robust evaluations of complex public health evaluations would be more achievable if programme implementation was integrated with improved national and local data collection, and robust quasi-experimental designs.
    MeSH term(s) Child ; Humans ; Semantic Web ; England ; Scotland ; Big Data ; Child Health
    Language English
    Publishing date 2023-05-11
    Publishing country Wales
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ISSN 2399-4908
    ISSN (online) 2399-4908
    DOI 10.23889/ijpds.v8i1.2113
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  7. Article ; Online: A DELPHI study priority setting the remaining challenges for the use of routinely collected data in trials

    Adam D. N. Williams / Gwyneth Davies / Amanda J. Farrin / Marion Mafham / Michael Robling / Matthew R. Sydes / Fiona V. Lugg-Widger

    Trials, Vol 24, Iss 1, Pp 1-

    COMORANT-UK

    2023  Volume 8

    Abstract: Abstract Background Researchers are increasingly seeking to use routinely collected data to support clinical trials. This approach has the potential to transform the way clinical trials are conducted in the future. The availability of routinely collected ...

    Abstract Abstract Background Researchers are increasingly seeking to use routinely collected data to support clinical trials. This approach has the potential to transform the way clinical trials are conducted in the future. The availability of routinely collected data for research, whether healthcare or administrative, has increased, and infrastructure funding has enabled much of this. However, challenges remain at all stages of a trial life cycle. This study, COMORANT-UK, aimed to systematically identify, with key stakeholders across the UK, the ongoing challenges related to trials that seek to use routinely collected data. Methods This three-step Delphi method consisted of two rounds of anonymous web-based surveys and a virtual consensus meeting. Stakeholders included trialists, data infrastructures, funders of trials, regulators, data providers and the public. Stakeholders identified research questions or challenges that they considered were of particular importance and then selected their top 10 in the second survey. The ranked questions were taken forward to the consensus meeting for discussion with representatives invited from the stakeholder groups. Results In the first survey, 66 respondents yielded over 260 questions or challenges. These were thematically grouped and merged into a list of 40 unique questions. Eighty-eight stakeholders then ranked their top ten from the 40 questions in the second survey. The most common 14 questions were brought to the virtual consensus meeting in which stakeholders agreed a top list of seven questions. We report these seven questions which are within the following domains: trial design, Patient and Public Involvement, trial set-up, trial open and trial data. These questions address both evidence gaps (requiring further methodological research) and implementation gaps (requiring training and/or service re-organisation). Conclusion This prioritised list of seven questions should inform the direction of future research in this area and should direct efforts to ensure that the ...
    Keywords Priority setting ; Trials methodology ; Routinely collected data ; Consensus ; Medicine (General) ; R5-920
    Subject code 310
    Language English
    Publishing date 2023-03-01T00:00:00Z
    Publisher BMC
    Document type Article ; Online
    Database BASE - Bielefeld Academic Search Engine (life sciences selection)

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  8. Article ; Online: Correction: Medicines and Healthcare products Regulatory Agency's "Consultation on proposals for legislative changes for clinical trials": a response from the Trials Methodology Research Partnership Adaptive Designs Working Group, with a focus on data sharing.

    Law, Martin / Couturier, Dominique-Laurent / Choodari-Oskooei, Babak / Crout, Phillip / Gamble, Carrol / Jacko, Peter / Pallmann, Philip / Pilling, Mark / Robertson, David S / Robling, Michael / Sydes, Matthew R / Villar, Sofía S / Wason, James / Wheeler, Graham / Williamson, S Faye / Yap, Christina / Jaki, Thomas

    Trials

    2023  Volume 24, Issue 1, Page(s) 744

    Language English
    Publishing date 2023-11-21
    Publishing country England
    Document type Published Erratum
    ZDB-ID 2040523-6
    ISSN 1745-6215 ; 1468-6694 ; 1745-6215
    ISSN (online) 1745-6215
    ISSN 1468-6694 ; 1745-6215
    DOI 10.1186/s13063-023-07763-6
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  9. Article ; Online: "I don't mean to be rude, but could you put a mask on while I'm here?" A qualitative study of risks experienced by domiciliary care workers in Wales during the COVID-19 pandemic.

    Prout, Hayley / Lugg-Widger, Fiona V / Brookes-Howell, Lucy / Cannings-John, Rebecca / Akbari, Ashley / John, Ann / Thomas, Daniel Rh / Robling, Michael

    Health & social care in the community

    2022  Volume 30, Issue 6, Page(s) e6601–e6612

    Abstract: Domiciliary care workers (DCWs) continued to provide care to adults in their own homes throughout the COVID-19 pandemic. The evidence of the impact of COVID-19 on health outcomes of DCWs is currently mixed. The OSCAR study will quantify the impact of ... ...

    Abstract Domiciliary care workers (DCWs) continued to provide care to adults in their own homes throughout the COVID-19 pandemic. The evidence of the impact of COVID-19 on health outcomes of DCWs is currently mixed. The OSCAR study will quantify the impact of COVID-19 upon health outcomes of DCWs in Wales, explore causes of variation and extrapolate to the rest of the UK DCW population. An embedded qualitative study aimed to explore DCW experiences during the pandemic, including factors that may have varied risk of exposure to COVID-19 and adverse health and wellbeing outcomes. Registered DCWs working throughout Wales were invited to participate in a semi-structured telephone interview. 24 DCWs were interviewed between February and July 2021. Themes were identified through inductive analysis using thematic coding. Several themes emerged relating to risk of exposure to COVID-19. First, general changes to the role of the DCW during the pandemic were identified. Second, practical challenges for DCWs in the workplace were reported, including staff shortages, clients and families not following safety procedures, initial shortages of personal protective equipment (PPE), DCW criticism of standard use PPE, client difficulty with PPE and management of rapid antigen testing. Third, lack of government/employer preparation for a pandemic was described, including the reorganisation of staff clients and services, inadequate or confusing information for many DCWs, COVID-19 training and the need for improved practical instruction and limited official standard risk assessments for DCWs. Pressure to attend work and perceptions of COVID-19 risk and vaccination was also reported. In summary, this paper describes the risk factors associated with working during the pandemic. We have mapped recommendations for each problem using these qualitative findings including tailored training and better support for isolated team members and identified the required changes at several socio-ecological levels.
    MeSH term(s) Adult ; Humans ; Pandemics ; COVID-19/epidemiology ; Wales/epidemiology ; Health Personnel ; Home Care Services
    Language English
    Publishing date 2022-11-24
    Publishing country England
    Document type Journal Article ; Research Support, Non-U.S. Gov't
    ZDB-ID 1155902-0
    ISSN 1365-2524 ; 0966-0410
    ISSN (online) 1365-2524
    ISSN 0966-0410
    DOI 10.1111/hsc.14109
    Database MEDical Literature Analysis and Retrieval System OnLINE

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