Royal College of Paediatrics
Royal College of Paediatrics
2 Projects, page 1 of 1
assignment_turned_in Project2021 - 2023Partners:CARDIFF UNIVERSITY, Royal College of Paediatrics, Cardiff University, Royal College of Paediatrics, Diabetes UK +2 partnersCARDIFF UNIVERSITY,Royal College of Paediatrics,Cardiff University,Royal College of Paediatrics,Diabetes UK,Diabetes UK,Cardiff UniversityFunder: UK Research and Innovation Project Code: ES/V017314/1Funder Contribution: 259,544 GBPInformation governance background: Important health and social science research is limited by the capacity of individual researchers to adhere to the necessary safeguards which are put in place to protect the privacy of individuals. Universities, as publicly funded organisations, have a legal basis to use data for research (Article 6(1) of the Data Protection Act 2018); however, research that seeks to combine information for individuals from different datasets requires the sharing of more sensitive information - such as name and date of birth - between organisations, which has a higher threshold of confidentiality (common law duty of confidentiality). One way to share such confidential data is to seek consent from the individuals represented in the data. However, when considering administrative datasets containing entire populations, it becomes infeasible, and bias due to self-selection into a study diminishes the value of a population-based approach. This is particularly important in health studies, where those individuals of most concern may not be attending clinics and so cannot even be approached for the option to be included. The Health Research Authority offer an alternative set of approvals to share confidential information where consent cannot be obtained (known as 'Section 251', part of the National Health Service Act 2006). Typically, researchers seek such an exemption to answer a specific set of research questions (known as 'Project Specific Section 251'), as we did in our current project linking the diabetes audits to education datasets for Wales. However, in this proposal we extend this to a special case of the exemption known as 'Research Database Section 251'. Substantive background: Evidence on how children with chronic conditions such as diabetes, epilepsy, and asthma fare in spheres beyond health is limited, in part due to the challenges in combining administrative data described above. To tackle this for diabetes we worked with the national paediatric and adult diabetes audits, together with HESA and Welsh Government, to flow and link these health and education datasets for Wales. This was a gruelling process involving working with data providers, the Health Research Authority, and the Medical Research Council Regulatory Support Centre to ensure the information governance was of the highest standard and was well understood and supported by the data providers and other parties. Objective 1 Information governance framework: The central task of our project is to set up the information governance framework (with the Research Database Section 251 approval as the backbone) for the linkage of paediatric health data to education data for England and Wales. This includes drafting linkage protocols, planning and drafting an application process for external researchers that wish to use the linked datasets, publishing the application process for researchers to use our Research Database approvals to link their own disease specific datasets into the research database; publishing all fair processing documentation for patients including modified versions specifically for children, for parents, in other languages etc. Objective 2 Proof of concept linkages: To demonstrate the efficacy of the framework we will link the paediatric (aged 0 to 16) and adult (aged 16 to 30) diabetes audits to the schools (NPD) and university (HESA) data for England using DfE as the processor for the identifiers and ONS-SRS as the secure repository. Objective 3 Extensions to other conditions: While the potential to use the governance framework to add data for other health conditions is a fundamental part of objective 1, we will work with other researchers, primarily for epilepsy, to ensure they are able to use the framework to add their data.
more_vert assignment_turned_in Project2020 - 2022Partners:The Children's Society, EKAM UK Foundation, EKAM UK Foundation, Children's Society, UCL +2 partnersThe Children's Society,EKAM UK Foundation,EKAM UK Foundation,Children's Society,UCL,Royal College of Paediatrics,Royal College of PaediatricsFunder: UK Research and Innovation Project Code: ES/V016253/1Funder Contribution: 527,883 GBPCoronavirus disease 2019 (COVID-19) has and will have huge direct health and economic implications as highlighted by the media, but there are and likely will be also a myriad of significant indirect health, social, and educational consequences for children and families. These impacts will likely be most keenly felt on the most vulnerable of CYP - such as those experiencing homelessness while living in temporary or insecure accommodation. Specifically, homeless children under age five (under5s) are not only at greater risk of exposure and transmission of COVID due to overcrowding in substandard housing, but also immediate and long-term impacts on growth, optimal health, and brain development. The COVID-19 pandemic could result in a number of further waves of increased infection incidence and last for 18 months or longer. The longevity and periodicity of the pandemic will therefore not have only short-term impacts but long-term for some children extending across most of their infant life with some children even being born into this pandemic. The Children's Commissioner suggested that there could be more than 210,000 homeless children in temporary accommodation or 'sofa surfing,' and approximately 585,000 who either are homeless or at risk of becoming homeless in England alone. The purpose of this study is to determine the barriers attributed to the COVID-19 pandemic and our associated health services and societal response, experienced by parents of under5s living in temporary accommodation nationally for themselves and their children. First, we will explore perceptions around access to health care services, such as seeking medical review in response to common childhood assessments (e.g. fever, diarrhoea, respiratory symptoms, accidents). Second, we will explore parent/carer perceived ability to support their child in achieving their optimal health outcomes (e.g. nutrition, vaccination uptake, overall wellbeing, growth, reaching full developmental milestones). We will also co-develop an information toolkit with the parents of this vulnerable population and front line (health and social care) workers to address their short-term and long-term needs once the lockdown period ends and there is an effort to return to "normalcy" while at the same time, there is a need to learn from these current experiences in preparation for a possible Winter resurgence of COVID-19, for any future epidemics or pandemics but also to rapidly address the health challenges that these children have encountered during this pandemic.
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