Dataset Information

Cohort profile: he East London Health and Care Partnership Data Repository: using novel integrated data to support commissioning and research.

ABSTRACT: PURPOSE:The East London Health and Care Partnership (ELHCP) Data Repository was established to support commissioning decisions in London. This dataset comprises routine clinical data for the general practitioner (GP)-registered populations of two London boroughs, Tower Hamlets and City and Hackney, and provides a rich source of demographic, clinical and health service use data of relevance to clinicians, commissioners, researchers and policy makers. This paper describes the dataset in its current form, its representativeness and data completeness. PARTICIPANTS:There were 351?749 and 344?511 members of the GP-registered population in the two boroughs, respectively, for the financial year 2017/2018. Demographic information and prevalence data were available for 9 mental health and 15 physical health conditions. Prevalence rates from the cohort were compared with local and national data. In order to illustrate the health service use data available in the dataset, emergency department use across mental health conditions was described. Information about data completeness was provided. FINDINGS TO DATE:The ELHCP Data Repository provides a rich source of information about a relatively young, urban, ethnically diverse, population within areas of socioeconomic deprivation. Prevalence data were in line with local and national statistics with some exceptions. Physical health conditions were more common in those with mental health conditions, reflecting that comorbidities are the norm rather than the exception. This has implications for integrated care. Data completeness for risk factors (eg, blood pressure, cholesterol) was high in patients with long-term conditions. FUTURE PLANS:The data are being further cleaned and evaluated using imputation, Bayesian and economic methods, principally focusing on specific cohorts, including type II diabetes, depression and personality disorder. Data continue to be collected for the foreseeable future to support commissioning decisions, which will also enable more long-term prospective analysis as data become available at the end of each financial year.

SUBMITTER: Ronaldson A

PROVIDER: S-EPMC7511638 | biostudies-literature | 2020 Sep

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Cohort profile: he East London Health and Care Partnership Data Repository: using novel integrated data to support commissioning and research.

Ronaldson Amy A Chandakas Evangelos E Kang Qiongwen Q Brennan Katie K Akande Aminat A Ebyarimpa Irene I Wyllie Eleanor E Howard George G Fradgley Richard R Freestone Mark M Bhui Kamaldeep K

BMJ open 20200918 9

<h4>Purpose</h4>The East London Health and Care Partnership (ELHCP) Data Repository was established to support commissioning decisions in London. This dataset comprises routine clinical data for the general practitioner (GP)-registered populations of two London boroughs, Tower Hamlets and City and Hackney, and provides a rich source of demographic, clinical and health service use data of relevance to clinicians, commissioners, researchers and policy makers. This paper describes the dataset in it ...[more]

PMID: 32948559

Similar Datasets

Project description:PurposeLinked maternity, neonatal and maternal mental health records were created to support research into the early life origins of physical and mental health, in mothers and children. The Early Life Cross Linkage in Research (eLIXIR) Partnership was developed in 2018, generating a repository of real-time, pseudonymised, structured data derived from the electronic health record systems of two acute and one Mental Health Care National Health Service (NHS) Provider in South London. We present early descriptive data for the linkage database and the robust data security and governance structures, and describe the intended expansion of the database from its original development. Additionally, we report details of the accompanying eLIXIR Research Tissue Bank of maternal and neonatal blood samples.ParticipantsDescriptive data were generated from the eLIXIR database from 1 October 2018 to 30 June 2019. Over 17 000 electronic patient records were included.Findings to date10 207 women accessed antenatal care from the 2 NHS maternity services, with 8405 deliveries (8772 infants). This diverse, inner-city maternity service population was born in over 170 countries with an ethnic profile of 46.1% white, 19.1% black, 7.0% Asian, 4.1% mixed and 4.1% other. Of the 10 207 women, 11.6% had a clinical record in mental health services with 3.0% being treated during their pregnancy. This first data extract included 947 infants treated in the neonatal intensive care unit, of whom 19.1% were postnatal transfers from external healthcare providers.Future plansElectronic health records provide potentially transformative information for life course research, integrating physical and mental health disorders and outcomes in routine clinical care. The eLIXIR database will grow by ~14 000 new maternity cases annually, in addition to providing child follow-up data. Additional datasets will supplement the current linkage from other local and national resources, including primary care and hospital inpatient data for mothers and their children.

Project description:IntroductionThis paper examines one of the NHS England Pioneers programmes of Integrated Care, which was implemented in three localities in East London, covering the area served by one of the largest hospital groups in the UK and bringing together commissioners, providers and local authorities. The partners agreed to build a model of integrated care that focused on the whole person. This qualitative and participatory evaluation looked at how an ambitious vision translated into the delivery of integrated care on the ground. The study explored the micro-mechanisms of integrated care relationships based on the experience of health and social care professionals working in acute and community care settings.MethodsWe employed a participatory approach, the Researcher in Residence model, whereby the researcher was embedded in the organisations she evaluated and worked alongside managers and clinicians to build collaboration across the full range of stakeholders, develop shared learning, and find common ground through competing interests, while trying to address power imbalances. A number of complementary qualitative methods of data generation were used, including documentary analysis, participant observations, semi-structured interviews, and coproduction workshops with frontline health and social care professionals to interpret the data and develop recommendations.ResultsOur fieldwork exposed persistent organisational fragmentation, despite the dominant rhetoric of integration and efforts to build a shared vision at senior governance levels. The evaluation identified several important themes, including: a growing barrier between acute and community services; a persisting difficulty experienced by health and social care staff in working together because of professional and cultural differences, as well as conflicting organisational priorities and guidelines; and a lack of capacity and support to deliver a genuine multidisciplinary approach in practice, despite the ethos of multiagency being embraced widely.DiscussionBy focusing on professionals' working routines, we detailed how and why action taken by organisational leaders failed to have tangible impact. The inability to align organisational priorities and guidelines on the ground, as well as a failure to acknowledge the impact of structural incentives for organisations to compete at the expense of cooperation, in a context of limited financial and human resources, acted as barriers to more coordinated working. Within an environment of continuous reconfigurations, staff were often confused about the functions of new services and did not feel they had influence on change processes. Investing in a genuine bottom-up approach could ensure that the range of activities needed to generate system-wide cultural transformation reflect the capacity of the organisations and systems and address genuine local needs.LimitationsThe authors acknowledge several limitations of this study, including the focus on one geographical area, East London, and the timing of the evaluation, with several new interventions and programmes introduced more or less simultaneously. Some of the intermediate care services under evaluation were still at pilot stage and some teams were undergoing new reconfigurations, reflecting the fast-pace of change of the past decade. This created confusion at times, for instance when discussing specific roles and activities with participants. We tried to address some of these challenges by organising several workshops with different teams to co-interpret and discuss the findings.

Project description:BackgroundThere are increasing expectations for researchers and knowledge users in the health system to use a research partnership approach, such as integrated knowledge translation, to increase the relevance and use of research findings in health practice, programmes and policies. However, little is known about how health research trainees engage in research partnership approaches such as IKT. In response, the purpose of this scoping review was to map and characterize the evidence related to using an IKT or other research partnership approach from the perspective of health research trainees in thesis and/or postdoctoral work.MethodsWe conducted this scoping review following the Joanna Briggs Institute methodology and Arksey and O'Malley's framework. We searched the following databases in June 2020: MEDLINE, Embase, CINAHL and PsycINFO. We also searched sources of unpublished studies and grey literature. We reported our findings in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews.ResultsWe included 74 records that described trainees' experiences using an IKT or other research partnership approach to health research. The majority of studies involved collaboration with knowledge users in the research question development, recruitment and data collection stages of the research process. Intersecting barriers to IKT or other research partnerships at the individual, interpersonal and organizational levels were reported, including lack of skills in partnership research, competing priorities and trainees' "outsider" status. We also identified studies that evaluated their IKT approach and reported impacts on partnership formation, such as valuing different perspectives, and enhanced relevance of research.ConclusionOur review provides insights for trainees interested in IKT or other research partnership approaches and offers guidance on how to apply an IKT approach to their research. The review findings can serve as a basis for future reviews and primary research focused on IKT principles, strategies and evaluation. The findings can also inform IKT training efforts such as guideline development and academic programme development.

Project description:IntroductionCollaborative research approaches, such as co-production, co-design, engaged scholarship and integrated knowledge translation (IKT), aim to bridge the evidence to practice and policy gap. There are multiple benefits of collaborative research approaches, but studies report many challenges with establishing and maintaining research partnerships. Researchers often do not have the opportunity to learn how to build collaborative relationships, and most graduate students do not receive formal training in research partnerships. We are unlikely to make meaningful progress in strengthening graduate and postgraduate training on working collaboratively with the health system until we have a better understanding of how students are currently engaging in research partnership approaches. In response, this scoping review aims to map and characterise the evidence related to using an IKT or other research partnership approach from the perspective of health research trainees.Methods and analysisWe will employ methods described by the Joanna Briggs Institute and Arksey and O'Malley's framework for conducting scoping reviews. The reporting will follow the Preferred Reporting Items for Systematic Reviews and Meta-Analysis extension for scoping reviews checklist. We will include both published and unpublished grey literature and search the following databases: MEDLINE, Embase, CINAHL, PsycINFO, ProQuest Dissertations & Theses Global databases, Google Scholar and websites from professional bodies and other organisations. Two reviewers will independently screen the articles and extract data using a standardised data collection form. We will narratively describe quantitative data and conduct a thematic analysis of qualitative data. We will map the IKT and other research partnership activities onto the Knowledge to Action cycle and IAP2 Levels of Engagement Framework.Ethics and disseminationNo ethical approval is required for this study. We will share the results in a peer-reviewed, open access publication, conference presentation and stakeholder communications.

Dataset Information

Cohort profile: he East London Health and Care Partnership Data Repository: using novel integrated data to support commissioning and research.

Publications

Cohort profile: he East London Health and Care Partnership Data Repository: using novel integrated data to support commissioning and research.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets