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In: Schriften zum Parteienrecht und zur Parteienforschung Band 56
Der Einsatz sog. "Social Bots" durch politische Parteien wird vor allem im Zusammenhang mit Wahlen diskutiert. Diese Form der Automatisierung ermöglicht es den Parteien, Meinungen praktisch unbegrenzt und auch unerkannt zu verbreiten. Mit den daraus resultierenden verfassungsrechtlichen Fragen, aber auch dem einfachrechtlichen Ordnungsrahmen, der für einen Social-Bot-Einsatz politischer Parteien besteht, setzt sich die Arbeit auseinander. Zugleich wird der Parteienwettbewerb betrachtet und untersucht, inwiefern eine Kontrolle durch die Parteien selbst zur Sicherung des Parteienwettbewerbs möglich ist. Dabei werden sowohl die Möglichkeiten de lege lata als auch verschiedene Ausgestaltungsmöglichkeiten de lege ferenda aufgezeigt.
In: International journal of population data science: (IJPDS), Band 7, Heft 3
ISSN: 2399-4908
ObjectivesThe Family Nurse Partnership (FNP) is a specialist home-visiting programme for first-time teenage mothers. Developed in the US, short-term outcomes (by age 2 years) were established in England in the Building Blocks trial. We used routine data (health, education, social care) linked to our trial cohort to assess longer-term impact.
ApproachMothers recruited to the trial and their first-born children were linked to health (Hospital Episode Statistics/HES: NHS Digital; Abortion statistics: Department of Health and Social Care), education/social care (National Pupil Database/NPD: Department for Education) data in England up to age 7-years. Analysis of data within in a trusted-research environment assessed programme impact upon child maltreatment, child development/educational and maternal life course outcomes when compared to usually provided health and social care support alone. Our primary outcome was child in need registration. Planned sub-group analysis included differential effects by maternal age, deprivation level, care experience and for child outcomes, sex.
ResultsMatch rates for 1547 children were 97.4% (NPD) and 98.3% (HES). We found no difference between trial arms in proportion of children assessed as in need (adjusted odds ratio (aOR) OR:0.98, 95% confidence interval (CI): 0.74 to 1.31). Aside from a longer duration in care for children in the usual care arm (two months), there were no other differences in maltreatment outcomes. Children in the FNP arm were more likely to achieve a good level of development at reception age at age 4-5 years (aOR:1.24, 95%CI: 1.01 to 1.52) and, after adjusting for month of birth, to reach the expected standard in reading at Key Stage 1 at age around 7 years (aOR:1.26, 95%CI: 1.02 to 1.57).
ConclusionsWe found programme improvements for child development/educational achievement but not for child maltreatment outcomes. Additional sub-group analysis revealed some evidence of the programme benefiting mothers with greater baseline vulnerability and boys, consistent with previous trials. The study benefits from the linkage of administrative data to a previously randomised trial cohort.
In: Family court review: publ. in assoc. with: Association of Family and Conciliation Courts, Band 57, Heft 3, S. 368-374
ISSN: 1744-1617
This article explores and shares the learning from two of Cafcass' innovative dispute resolution pilot programs. The programs aim to improve outcomes for families against the backdrop of rising private law demand in England, while keeping the child at the center. The Positive co‐Parenting Programme pilot provides a structured intervention to reduce conflict and promote timely resolution for children and families in complex cases. The Support with Making Child Arrangements pilot explores whether the provision of a package of support to parents ahead of the first court hearing can help them come to safe agreements about their children without the need for court intervention.
In: International journal of population data science: (IJPDS), Band 7, Heft 3
ISSN: 2399-4908
ObjectivesAdministrative data linkage is relatively under-utilised as a way of generating evidence to guide homelessness policy and service delivery in the UK. Our objective is to contribute insight into the ethical, legal, and practical challenges of using data linkage with data from people experiencing homelessness (PEH).
ApproachWe outline the data collection and linkage methodologies for two UK-based studies related to PEH. The first design aimed to explore the acceptability and feasibility of consented linkage of trial data ('Moving On' trial) to NHS Digital records in a cohort of recruited PEH in two English local authorities (n=50). The second design used administrative data originating from a local authority homelessness service in Wales (n=17,000 cases) to explore educational outcomes of children in homeless households. The resultant data linkage rates are contrasted and discussed in relation to the mechanisms for obtaining and linking personal data.
ResultsThe Moving On trial demonstrated high rates of consent for data linkage and the ability to collect sufficient personal identifiable data to increase the chance of successful matching. Aggregate match rates will be discussed. Of the roughly 17,000 cases included in the local authority administrative data, 75% could be linked to unique individuals using probabilistic matching and were therefor 'useable' in linkage research. The proportion of useable cases rapidly decreased as the cut-off for matching quality was increased, to roughly 50% of cases being useable when a 99% match probability cut-off was used. Matching rates were higher amongst priority need homeless cases, possibly reflecting business need to identify and work closely with these people.
ConclusionWhere homelessness administrative data systems are not designed to enable data linkage, low matching rates can result, reducing study sample sizes and potentially leading to bias towards more extreme cases of homelessness if missed-matches are not random. Consented linkage within large-scale trials offers one possibility for generating long-term evidence.
In: International journal of population data science: (IJPDS), Band 7, Heft 1
ISSN: 2399-4908
IntroductionFactors 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.
ObjectivesOur aim is to explore attitudes regarding the collection and linkage of maltreatment data for research.
MethodsParticipants 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.
ResultsThree 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.
ConclusionsNovel 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.
In: International journal of population data science: (IJPDS), Band 7, Heft 3
ISSN: 2399-4908
ObjectivesDomiciliary care workers (DCWs) continued to provide social care to vulnerable adults in their own homes throughout the COVID-19 pandemic. However, evidence of pandemic impact upon DCWs' health is mixed. The OSCAR study aimed to quantify the impact of COVID-19 upon health outcomes of DCWs in Wales, and explore causes of variation.
ApproachData for all registered DCWs in Wales are newly available via the SAIL Databank using a secured, privacy-protecting encrypted anonymisation process. Occupational registration data for DCWs working during the pandemic was combined with electronic health records data to describe health outcomes within the first two years of the pandemic. Rates of confirmed COVID-19 infections and health outcomes including mental health contacts, fit notes, respiratory infections, and mortality will be reported and explore variation (by factors such as age, sex, ethnicity, deprivation quintile, employer). We will also explore changes over time (pre- and post- onset of COVID-19 pandemic) in outcomes.
ResultsThe OSCAR study used anonymised health records for 15,727 registered DCWs in Wales. PCR-confirmed infection rates in the first full year of the pandemic (March20-February21) were 12% although lower in males (9%) than for females (12%). However, 28% of care workers received care for mental health with large differences observed between males (20%) and females (29%), and between workers from different health board regions (range 22% to 33%). The extent to which these represent pre-pandemic rates overall and how they compare to the broader community will be explored in our remaining work. A qualitative sub-study involving interviews with DCWs has informed our approach to modelling and to interpretation of findings.
ConclusionUsing novel anonymised occupational records at a national level and existing linked EHR data and qualitative interviews, the OSCAR study will quantify the risk of COVID-19 on DCWs' health and explore sources of variation. This will provide a secure base for informing public health policy and occupational guidance.
In: International journal of population data science: (IJPDS), Band 7, Heft 3
ISSN: 2399-4908
ObjectivesThe Family Nurse Partnership (FNP) is an intensive home visiting service for teenage first-time mothers, developed/trialled in the US and adapted/trialled across Europe. The Scottish Government aims to build on and supplement the existing evidence base for FNP, to assess effectiveness of the programme, for future improvement work in Scotland.
ApproachThe commissioned natural experiment of FNP, takes advantage of existing information infrastructures in Scotland from health, education and social care and FNP programme implementation data. A cohort design was used covering ten Health Boards in Scotland. The cohort included first-time teenage mothers enrolled as FNP Clients between 2010 and 2016 and women who met FNP eligibility criteria but were pregnant when the programme was not recruiting (Controls). Outcomes are mapped to the Scottish FNP logic model and include those being tested statistically (n=34) or, where direction of effect is uncertain, outcomes are rare or data quality poor, descriptively (n=20).
ResultsWe established a model of data linkage to routine Scottish data. Approvals were obtained to access data on over 8000 mothers (FNP Clients and Controls) and their children which formed the study cohort and were mapped to routine health, education and social care data. Outcomes covered maternal (health (smoking, alcohol/drugs), subsequent pregnancies/births, education) and child (health, development, education, protection) domains. Observed baseline imbalances between study arms will be described and adjusted for in modelling. Results will be published by the time of the conference and include sensitivity analyses that explore a priori sub-groups, variation by health board, year of booking and programme dosage.
ConclusionThe impact of this evaluation will establish a robustly matched study cohort, develop the evidence base on FNP in Scotland and internationally, develop a more streamlined linkage and approval process, and identify outcomes for short-term follow-up and importantly for a longer-term follow-up of the mothers and their children.
In: International journal of population data science: (IJPDS), Band 3, Heft 4
ISSN: 2399-4908
IntroductionThe method used to define a GP-consultation using routine data will vary depending on the data source and research question. However, without consensus the approach will be tackled by numerous researchers and invariably result in different definitions. The LUCI study is assessing outcomes of childhood UTI using routine data sources.
Objectives and ApproachWe are interested in GP urine sampling rate and re-consultation rate. The GP dataset includes multiple clinical (acute, routine monitoring, prescribing, results) and administrative codes. A GP consultation therefore needed to be defined. GP read code frequencies for our study cohort of children were produced. One researcher reviewed the codes that represented 80% of the data and classified them as a consultation or not. Where there was uncertainty this was independently reviewed by two clinicians and discrepancies agreed by the management team.
ResultsWe will present the decisions and assumptions made for this study in defining a GP consultation. 25,623 Read Codes represented the consultations for our study cohort of which 460 codes represented 80% of the consultations. The remaining 20% of codes represented <0.032% of records each. The 460 Read Codes were reviewed and following independent review and agreement from the management group 149 Read Codes were excluded. These were grouped into the following categories Administrative (e.g. Incoming Mail Processing, Ethnicity codes), Vaccinations, Child Health (e.g. First Smiled), Asthma and Medication Review. The GP consultations to be included in the analysis were then restricted to exclude these codes. This has been an important step in cleaning and understanding the data prior to analysis.
Conclusion/ImplicationsA consultation was defined for this study however there will be pros and cons to this method. In lieu of a consensus approach to the method this work is the first step to sharing approaches to help researchers with the same challenge.
In: International journal of population data science: (IJPDS), Band 7, Heft 3
ISSN: 2399-4908
ObjectivesA Sore Throat Test and Treat (STTT) service was introduced in selected community pharmacies to screen against Streptococcus A and appropriately treat infections, relieving pressure on General Practices (GP). The long-term impact on patient and NHS outcomes is unclear. A robust evaluation is required to inform future policy and roll-out.
ApproachA matched cohort study comparing patients who received an STTT consultation in community pharmacy (exposed) compared to consultation with GP (unexposed). Individual-level data from participating STTT pharmacies were extracted from the Choose Pharmacy IT platform, anonymised and acquired into the Secure Anonymised Information Linkage (SAIL) Databank. Both cohorts were linked to other longitudinal health and administrative data within SAIL to create study outcomes (e.g. antibiotic prescribing, re-consultation, attendance/admission at Emergency Department/hospital). The impact of the STTT service was evaluated by modelling the outcomes using logistic regression to calculate odds ratios.
Results7553 patients exposed to the STTT service (8,313 consultations) in community pharmacies in Cwm Taf Morgannwg and Betsi Cadwaladr University Health Boards between 1st November 2018 and 28th February 2020, were successfully anonymised and acquired into the SAIL Databank (97.16%). 99.5% of these individuals were then linked to the Welsh Demographic Service Dataset (WDSD), enabling demographics to be generated. 6,665 distinct consultations remained in the exposed group after exclusion criteria were applied. A matched unexposed cohort will be created, and odds ratios will be presented to compare the risk of each outcome for those exposed to the STTT service compared to usual care.
ConclusionThis innovative study is the first to link national pharmacy service data to individual-level population-scale longitudinal health and administrative data in the SAIL Databank. Our findings will inform clear and actionable recommendations regarding the service design and future roll-out of STTT services across the UK and internationally.
In: International journal of population data science: (IJPDS), Band 4, Heft 3
ISSN: 2399-4908
BackgroundPOOL is a cohort study designed to establish whether waterbirth, compared to leaving a pool prior to birth, is as safe for mothers and infants. It is a novel case study using routine maternity and neonatal data for research purposes, including the adaptation and addition of locally collected electronic data at sites.
AimWe aimed to establish the feasibility of the study design, which combines data from maternity information systems(MIS) and neonatal data using a dissent-based linkage model and the addition of new variables into the MIS.
MethodsThe study will utilise individual level data entered into local MIS at 30 NHS Trusts linked with the National Neonatal Research Database(NNRD). New variables were added to one pilot site before rolling out to the remaining sites. A third party added the new variables, extracted data from the MIS to send to the study team and transferred data for matching to the NNRD, ensuring the study team receive only anonymised data. The feasibility study aimed to establish the quality and completion of the newly added variables, the levels of missingness for key outcomes from an extract of 4 years of retrospective data, and ensured the datasets could link using the study ID generated by our third party.
ResultsThe new variables were added into the MIS and data were extracted after a 10week pilot. New variables were present and had been entered as per specified metadata requirements. 23,140 records were extracted from the retrospective data and key variables assessed for missingness e.g.place of birth(<0.1% missing). The datasets could link using the studyID generated by the third party.
ConclusionThrough study set-up and in this pilot, we provide evidence that the main study is feasible, satisfies governance requirements and likely to generate data of sufficient quality to address our main research questions.
In: International journal of population data science: (IJPDS), Band 3, Heft 4
ISSN: 2399-4908
IntroductionThe Family Nurse Partnership(FNP) is an intensive home-visiting service for teenage first-time mothers (and children), developed/trialled in the US and adapted/trialled across Europe.The Scottish Government(SG) aims to build on and supplement the existing national/international evidence base for FNP, to assess effectiveness and opportunities for optimisation of the programme, for future decision making in Scotland.
Objectives and ApproachThe evaluation commissioned is a natural experiment of FNP, taking advantage of the existing information infrastructure in Scotland. This natural experiment represents an important opportunity to determine programme impact upon many key programme outcomes using routinely collected data at a lower cost than a comparably sized effectiveness trial. Key objectives are: to identify clients in receipt of FNP-support and a control sample of matched families who would meet criteria for FNP but did not receive support, to obtain approval and through anonymised data linkage link to health and other data, and to determine the effect of FNP across a range of maternal and child outcomes.
ResultsThe succes of the natural experiment design in trying to replicate the gold standard design of the RCT will be presented and will cover the following topics: (how cases and a comparable group of first-time teenage women have been identified across 10 Health Boards (HBs) between 2009 and 2016 using data made available by the electronic Data Research and Innovation Service (eDRIS) from FNP, NHS Scotland and SG; the matching process of the cases and controls using propensity score methods to ensure an unbiased comparison; the linkage to health, social care and educational datasets and the approval processes involved, and the strengths and limitations of using routine data to evaluate relevant study outcomes that map to a logic model.
Conclusion/ImplicationsThe impact of this evaluation into the effectiveness of FNP in Scotland will establish a robustly matched study cohort, a more strealmined linkage and approval process, and identification of outcomes not only for a short-term follow-up but also for a longer-term follow-up of the teenage mothers and their children.
In: International journal of population data science: (IJPDS), Band 3, Heft 3
ISSN: 2399-4908
IntroductionResearchers are increasingly using routinely collected data in addition to, or instead of, other data collection methods. The UK government continues to invest in research centres to encourage use of these data, and trials and cohort studies utilise data linkage methods in the follow-up of participants. This does not come without its limitations and challenges, such as data access delays.
ObjectiveThis paper outlines the challenges faced by three projects utilising individual-level routinely-collected linked data for the longer-term follow-up of participants.
MethodsThese studies are varied in design, study population and data providers. One researcher was common to the three studies and collated relevant study correspondence, formal documentary evidence such as data sharing agreements and, where relevant, meeting records to review. Key themes were identified and reviewed by other members of the research teams. Mitigating strategies were identified and discussed with a data provider representative and a broader group of researchers to finalise the recommendations presented.
ResultsThe challenges discussed are grouped into five themes: Data application process; Project timelines; Dependencies and considerations related to consent; Information Governance; Contractual. In presenting our results descriptively we summarise each case study, identify the main cross-cutting themes and consider the potential for mitigation of challenges.
ConclusionsWe make recommendations that identify responsibilities for both researchers and data providers for mitigating and managing data access challenges. A continued conversation within the research community and with data providers is needed to continue to enable researchers to access and utilise the wealth of routinely-collected data available. The suggestions made in this paper will help researchers be better prepared to deal with the challenges of applying for data from multiple data providers.
In: Children and youth services review: an international multidisciplinary review of the welfare of young people, Band 160, S. 107548
ISSN: 0190-7409