Improving data sharing between acute hospitals in England: an overview of health record system distribution and retrospective observational analysis of inter-hospital transitions of care

Warren, Leigh R.; Clarke, Jonathan; Arora, Sonal; Darzi, Ara

doi:10.1136/bmjopen-2019-031637

Cited by 59 publications

(59 citation statements)

References 18 publications

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“…The NHS necessarily holds identifiable patients’ medical records within specific NHS organisations [ 1 ] but this is confidential [ 2 ] and classed as sensitive [ 3 ]. Electronic health records (EHRs) facilitate data sharing, which is beneficial for the individual [ 4 ] especially when care is co-delivered across organisations [ 5 ]. Also, EHRs facilitate health data sharing for health service planning, research and innovation, termed secondary use [ 6 ] but this usually involves anonymised data [ 7 ].…”

Section: Introductionmentioning

confidence: 99%

Perceptions of anonymised data use and awareness of the NHS data opt-out amongst patients, carers and healthcare staff

et al. 2021

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Background England operates a National Data Opt-Out (NDOO) for the secondary use of confidential health data for research and planning. We hypothesised that public awareness and support for the secondary use of health data and the NDOO would vary by participant demography and healthcare experience. We explored patient/public awareness and perceptions of secondary data use, grouping potential researchers into National Health Service (NHS), academia or commercial. We assessed awareness of the NDOO system amongst patients, carers, healthcare staff and the public. We co-developed recommendations to consider when sharing unconsented health data for research. Methods A patient and public engagement program, co-created and including patient and public workshops, questionnaires and discussion groups regarding anonymised health data use. Results There were 350 participants in total. Central concerns for health data use included unauthorised data re-use, the potential for discrimination and data sharing without patient benefit. 94% of respondents were happy for their data to be used for NHS research, 85% for academic research and 68% by health companies, but less than 50% for non-healthcare companies and opinions varied with demography and participant group. Questionnaires showed that knowledge of the NDOO was low, with 32% of all respondents, 53% of all NHS staff and 29% of all patients aware of the NDOO. Recommendations to guide unconsented secondary health data use included that health data use should benefit patients; data sharing decisions should involve patients/public. That data should remain in close proximity to health services with the principles of data minimisation applied. Further, that there should be transparency in secondary health data use, including publicly available lists of projects, summaries and benefits. Finally, organisations involved in data access decisions should participate in programmes to increase knowledge of the NDOO, to ensure public members were making informed choices about their own data. Conclusion The majority of participants in this study reported that the use of healthcare data for secondary purposes was acceptable when accessed by NHS. Academic and health-focused companies. However, awareness was limited, including of the NDOO. Further development of publicly-agreed recommendations for secondary health data use may improve both awareness and confidence in secondary health data use.

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Section: Introductionmentioning

confidence: 99%

Perceptions of anonymised data use and awareness of the NHS data opt-out amongst patients, carers and healthcare staff

et al. 2021

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“…44 Additionally, there is disparity in access to technology across mental health clinical services; 45 for example, variation in the UK National Health Service Trusts between using paper versus electronic patient records. 46 …”

Section: Discussionmentioning

confidence: 99%

Adapting practice in mental healthcare settings during the COVID-19 pandemic and other contagions: systematic review

2021

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Background During the global COVID-19 pandemic, there has been guidance concerning adaptations that physical healthcare services can implement to aid containment, but there is relatively little guidance for how mental healthcare services should adapt service provision to better support staff and patients, and minimise contagion spread. Aims This systematic review explores service adaptations in mental health services during the COVID-19 pandemic and other contagions. Method The Allied and Complementary Medicine database (AMED), the Cumulative Index to Nursing and Allied Health Literature (CINAHL), EMBASE, Medline, PsycINFO and Web of Science were systematically searched for published studies from database inception to April 2020. Data were extracted focusing on changes to mental health services during contagion outbreaks. Data were analysed with thematic analysis. Results Nineteen papers were included: six correspondence/point-of-view papers, five research papers, five reflection papers, two healthcare guideline documents and one government document. Analysis highlighted four main areas for mental health services to consider during contagion outbreaks: infection control measures to minimise contagion spread, including procedural and practical solutions across different mental health settings; service delivery, including service changes, operational planning and continuity of care; staff well-being (psychological and practical support); and information and communication. Conclusions Mental health services need to consider infection control measures and implement service changes to support continuity of care, and patient and staff well-being. Services also need to ensure they are communicating important information in a clear and accessible manner with their staff and patients, regarding service delivery, contagion symptoms, government guidelines and well-being.

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“…Finally, a research topic of broad and current interest is the creation of interoperability standards describing management and sharing of genomic and clinical data amongst EHR-paired biobanks ( 2 , 32 ). Although the importance of introducing interoperability in EHR ( 12 ) and in biobank systems ( 50 ) is recognized by the main stakeholders of healthcare systems, the actual progress toward true semantic interoperability has been slow, even for well-developed national healthcare information systems ( 51 ). “Enabling genomic data sharing for the benefit of human health” is the motto of the Global Alliance for Genomics and Health (GA4GH) network whose strategic plan involves progress acceleration of standards and frameworks for genomic data sharing aiming in responsible sharing of clinical-grade genomic data by 2022 ( 52 ).…”

Section: Methodsmentioning

confidence: 99%

Integration of Biobanks in National eHealth Ecosystems Facilitating Long-Term Longitudinal Clinical-Omics Studies and Citizens' Engagement in Research Through eHealthBioR

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et al. 2021

Front. Digit. Health

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Biobanks have long existed to support research activities with BBMRI-ERIC formed as a European research infrastructure supporting the coordination for biobanking with 20 country members and one international organization. Although the benefits of biobanks to the research community are well-established, the direct benefit to citizens is limited to the generic benefit of promoting future research. Furthermore, the advent of General Data Protection Regulation (GDPR) legislation raised a series of challenges for scientific research especially related to biobanking associate activities and longitudinal research studies. Electronic health record (EHR) registries have long existed in healthcare providers. In some countries, even at the national level, these record the state of the health of citizens through time for the purposes of healthcare and data portability between different providers. The potential of EHRs in research is great and has been demonstrated in many projects that have transformed EHR data into retrospective medical history information on participating subjects directly from their physician's collected records; many key challenges, however, remain. In this paper, we present a citizen-centric framework called eHealthBioR, which would enable biobanks to link to EHR systems, thus enabling not just retrospective but also lifelong prospective longitudinal studies of participating citizens. It will also ensure strict adherence to legal and ethical requirements, enabling greater control that encourages participation. Citizens would benefit from the real and direct control of their data and samples, utilizing technology, to empower them to make informed decisions about providing consent and practicing their rights related to the use of their data, as well as by having access to knowledge and data generated from samples they provided to biobanks. This is expected to motivate patient engagement in future research and even leads to participatory design methodologies with citizen/patient-centric designed studies. The development of platforms based on the eHealthBioR framework would need to overcome significant challenges. However, it would shift the burden of addressing these to experts in the field while providing solutions enabling in the long term the lower monetary and time cost of longitudinal studies coupled with the option of lifelong monitoring through EHRs.

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Improving data sharing between acute hospitals in England: an overview of health record system distribution and retrospective observational analysis of inter-hospital transitions of care

Cited by 59 publications

References 18 publications

Perceptions of anonymised data use and awareness of the NHS data opt-out amongst patients, carers and healthcare staff

Perceptions of anonymised data use and awareness of the NHS data opt-out amongst patients, carers and healthcare staff

Adapting practice in mental healthcare settings during the COVID-19 pandemic and other contagions: systematic review

Integration of Biobanks in National eHealth Ecosystems Facilitating Long-Term Longitudinal Clinical-Omics Studies and Citizens' Engagement in Research Through eHealthBioR

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