scholarly journals Should free-text data in electronic medical records be shared for research? A citizens’ jury study in the UK

2020 ◽  
Vol 46 (6) ◽  
pp. 367-377 ◽  
Author(s):  
Elizabeth Ford ◽  
Malcolm Oswald ◽  
Lamiece Hassan ◽  
Kyle Bozentko ◽  
Goran Nenadic ◽  
...  
Keyword(s):  
Clinical Information ◽  
Service Planning ◽  
Structured Data ◽  
Free Text ◽  
Patient Privacy ◽  
Text Data ◽  
The Public ◽  
Public Benefit ◽  
The Uk ◽  
Privacy Risks

BackgroundUse of routinely collected patient data for research and service planning is an explicit policy of the UK National Health Service and UK government. Much clinical information is recorded in free-text letters, reports and notes. These text data are generally lost to research, due to the increased privacy risk compared with structured data. We conducted a citizens’ jury which asked members of the public whether their medical free-text data should be shared for research for public benefit, to inform an ethical policy.MethodsEighteen citizens took part over 3 days. Jurors heard a range of expert presentations as well as arguments for and against sharing free text, and then questioned presenters and deliberated together. They answered a questionnaire on whether and how free text should be shared for research, gave reasons for and against sharing and suggestions for alleviating their concerns.ResultsJurors were in favour of sharing medical data and agreed this would benefit health research, but were more cautious about sharing free-text than structured data. They preferred processing of free text where a computer extracted information at scale. Their concerns were lack of transparency in uses of data, and privacy risks. They suggested keeping patients informed about uses of their data, and giving clear pathways to opt out of data sharing.ConclusionsInformed citizens suggested a transparent culture of research for the public benefit, and continuous improvement of technology to protect patient privacy, to mitigate their concerns regarding privacy risks of using patient text data.

scholarly journals Unsupervised identification of crime problems from police free-text data

Crime Science ◽  
2020 ◽  
Vol 9 (1) ◽  
Author(s):  
Daniel Birks ◽  
Alex Coleman ◽  
David Jackson
Keyword(s):  
Crime Reduction ◽  
Free Text ◽  
Topic Modelling ◽  
Modus Operandi ◽  
Text Data ◽  
Machine Learning Methods ◽  
Major Metropolitan Area ◽  
Operational Decision Making ◽  
The Uk ◽  
Crime Classification

Abstract We present a novel exploratory application of unsupervised machine-learning methods to identify clusters of specific crime problems from unstructured modus operandi free-text data within a single administrative crime classification. To illustrate our proposed approach, we analyse police recorded free-text narrative descriptions of residential burglaries occurring over a two-year period in a major metropolitan area of the UK. Results of our analyses demonstrate that topic modelling algorithms are capable of clustering substantively different burglary problems without prior knowledge of such groupings. Subsequently, we describe a prototype dashboard that allows replication of our analytical workflow and could be applied to support operational decision making in the identification of specific crime problems. This approach to grouping distinct types of offences within existing offence categories, we argue, has the potential to support crime analysts in proactively analysing large volumes of modus operandi free-text data—with the ultimate aims of developing a greater understanding of crime problems and supporting the design of tailored crime reduction interventions.

Public perspectives of social prescribing

2021 ◽  
Author(s):  
Koser Khan ◽  
Fiona Ward ◽  
Emma Halliday ◽  
Vivien Holt
Keyword(s):  
Service User ◽  
Public Awareness ◽  
Service Planning ◽  
North West ◽  
The Public ◽  
Social Prescribing ◽  
The Social ◽  
Public Perspectives ◽  
The Uk ◽  
User Perspectives

ABSTRACT Background There is a strong national drive within the UK government and National Health Service for social prescribing. Previous research studies have mainly focused on service user perspectives and evaluating their experiences. There is limited evidence on how the general public perceive and understand what social prescribing is and how these views could influence service planning and delivery. This paper seeks to understand perceptions of social prescribing within the wider community. Methods Semi-structured focus groups were conducted with 37 members of the public in four areas in north-west England. We explored public awareness and understanding of social prescribing. Results Limited knowledge of the term social prescribing was found amongst participants as well as limited involvement in community discussions of the topic. Concerns were raised about the short-term nature of activities and the need for adequate resourcing to support continuity of service provision. The social prescribing link worker was considered to be important in supporting engagement with services and it was preferred this role was undertaken by people with local knowledge. Conclusions The findings provide evidence of public perspectives on social prescribing and highlight how wider community perceptions can supplement service user feedback to support social prescribing service planning, commissioning and delivery.

scholarly journals Public Benefit: the challenge for development-led archaeology in the UK

2021 ◽  
Author(s):  
Sadie Watson
Keyword(s):  
Best Practice ◽  
Theoretical Concept ◽  
The Public ◽  
Public Benefit ◽  
Development Control ◽  
Research And Innovation ◽  
Archaeological Work ◽  
Briefing Document ◽  
The Uk ◽  
New Research

The challenge of providing public benefit from development control archaeology has been a concern across Europe after both the Valletta and Faro conventions encouraged the view that the public must be the key beneficiaries of archaeological work, and since then the theoretical concept of public benefit has become well recognised across our profession. However, it seems to me that the archaeological sector does not yet provide this in a meaningful way or know how to maximise the public benefit potential of our work; indeed, this is acknowledged at the highest levels (e.g. British Academy 2017, 33). The EAC established their Working Group on 'Making the Case' to investigate examples of best practice and provide a practical toolkit for the better articulation of public benefit arising from development-led archaeology (EAC 2019). In the UK the Chartered Institute for Archaeologists has published a briefing document that outlines the potential for public benefit offered by archaeology (CIfA 2020). This dovetails well with a new research project, funded by United Kingdom Research and Innovation (UKRI) and hosted at Museum of London Archaeology (MOLA), intended to ensure that public benefit is at the heart of decision-making throughout the development control sector in the UK (MOLA 2019). This article provides an introduction to the rationale behind this project and outlines how the project ambitions could be achieved through a careful navigation through the complex structures of development programmes' procurement and management.

scholarly journals Family refusal of eye tissue donation from potential solid organ donors: a retrospective analysis of summary and free-text data from the UK National Health Service Blood and Transplant Services (NHS-BT) National Referral Centre (1 April 2014 to 31 March 2017)

BMJ Open ◽  
2021 ◽  
Vol 11 (9) ◽  
pp. e045250
Author(s):  
Mike Bracher ◽  
Banyana C Madi-Segwagwe ◽  
Emma Winstanley ◽  
Helen Gillan ◽  
Tracy Long-Sutehall
Keyword(s):  
National Health Service ◽  
Health Service ◽  
Free Text ◽  
Solid Organ ◽  
Organ Donors ◽  
Text Data ◽  
Data Set ◽  
Uk National Health Service ◽  
The Uk ◽  
Eye Donation

ObjectivesLong-standing undersupply of eye tissue exists both in the UK and globally, and the UK National Health Service Blood and Transplant Service (NHSBT) has called for further research exploring barriers to eye donation. This study aims to: (1) describe reported reasons for non-donation of eye tissue from solid organ donors in the UK between 1 April 2014 and 31 March 2017 and (2) discuss these findings with respect to existing theories relating to non-donation of eyes by family members.DesignSecondary analysis of a national primary data set of recorded reasons for non-donation of eyes from 2790 potential solid organ donors. Data analysis including descriptive statistics and qualitative content analysis of free-text data for 126 recorded cases of family decline of eye donation.SettingNational data set covering solid organ donation (secondary care).Participants2790 potential organ donors were assessed for eye donation eligibility between 1 April 2014 and 31 March 2017.ResultsReasons for non-retrieval of eyes were recorded as: family wishes (n=1339, 48% of total cases); medical reasons (n=841, 30%); deceased wishes (n=180, 7%). In >50% of recorded cases, reasons for non-donation were based on family’s knowledge of the deceased wishes, their perception of the deceased wishes and specific concerns regarding processes or effects of eye donation (for the deceased body). Findings are discussed with respect to the existing theoretical perspectives.ConclusionEye donation involves distinct psychological and sociocultural factors for families and HCPs that have not been fully explored in research or integrated into service design. We propose areas for future research and service development including potential of only retrieving corneal discs as opposed to full eyes to reduce disfigurement concerns; public education regarding donation processes; exploration of how request processes potentially influence acceptance of eye donation; procedures for assessment of familial responses to information provided during consent conversations.

scholarly journals NHS Scotland Public Benefit and Privacy Panel (PBPP) – Does a Proportionate Governance Review Work?

2018 ◽  
Vol 3 (4) ◽  
Author(s):  
Carole Morris ◽  
Ashley Grey
Keyword(s):  
Measurement Tool ◽  
Tier 2 ◽  
Audit Process ◽  
The Public ◽  
Public Benefit ◽  
Audit Review ◽  
Tier 1 ◽  
Governance Process ◽  
Access To Data ◽  
Privacy Risks

IntroductionSince its’ inception in 2015, the NHS Scotland Public Benefit and Privacy Panel (PBPP) has approved over 200 applications for access to data. The PBPP are accountable to the public and must demonstrate their assessment of applications for data use in terms of envisaged public benefit and potential privacy risks. Objectives and ApproachIn 2017 the first annual audit took place. The purpose of the audit exercise was twofold; establish that the governance process is robust and that proportionate governance criteria are the correct measurement tool. The full PBPP committee reviewed a random selection of 10 applications approved at Tier 1 between January 2016 and December 2016. Committee members were split into groups and sent paperwork relating to the application. A review record was completed covering the questions within the proportionate governance criteria. Review records were sent to the PBPP Panel Manager for collation and an audit record compiled for each application. ResultsApplications were identified where a discrepancy existed between the Tier 1 decision and the PBPP Committee audit review. These audit records were tabled for discussion at a workshop involving a subgroup of PBPP Committee and Tier 1 panel members. From the ten applications that were randomly selected, six were consistently reviewed by both the Tier 1 and Tier 2 Committee with no referral points identified from the either Tier. 4 were identified for discussion in a workshop including representatives from both Tiers. During the discussion it was agreed that 2 out of the 4 should have triggered a further review by Tier 2 but that the decision to approve all 4 applications would have remained. Conclusion/ImplicationsThis suggests that both Tiers have a sound understanding of the proportionate governance criteria and that for the majority of applications this is being interpreted uniformly and that the audit process is required to ensure this is maintained going forward.

scholarly journals Support needs and barriers to accessing support: Baseline results of a mixed-methods national survey of people bereaved during the COVID-19 pandemic

2021 ◽  
Author(s):  
Emily J Harrop ◽  
Silvia Goss ◽  
Damian JJ Farnell ◽  
Mirella Longo ◽  
Anthony Byrne ◽  
...  
Keyword(s):  
Emotional Support ◽  
Support Needs ◽  
Free Text ◽  
Bereavement Support ◽  
Text Data ◽  
Face To Face ◽  
The Uk ◽  
High Level ◽  
Levels Of Support ◽  
Access Services

Background: The COVID-19 pandemic is a mass bereavement event which has profoundly disrupted grief experiences. Understanding support needs and access to support among people bereaved at this time is crucial to ensuring appropriate bereavement support infrastructure. Aim: To investigate grief experiences, support needs and use of formal and informal bereavement support among people bereaved during the pandemic. Design: Baseline results from a longitudinal survey. Support needs and experiences of accessing support are reported using descriptive statistics and thematic analysis of free-text data. Setting/Participants: 711 adults bereaved in the UK between March-December 2020, recruited via media, social media, national associations and community/charitable organisations. Results: High-level needs for emotional support were identified. Most participants had not sought support from bereavement services (59%, n=422) or their GP (60%, n=428). Of participants who had sought such support, over half experienced difficulties accessing bereavement services (56%, n=149)/GP support (52%, n=135). 51% reported high/severe vulnerability in grief; among these, 74% were not accessing bereavement or mental-health services. Barriers included limited availability, lack of appropriate support, discomfort asking for help, and not knowing how to access services. 39% (n=279) experienced difficulties getting support from family/friends, including relational challenges, little face-to-face contact, and disrupted collective mourning. The perceived uniqueness of pandemic bereavement and wider societal strains exacerbated their isolation. Conclusions: People bereaved during the pandemic have high levels of support needs alongside difficulties accessing support. We recommend increased provision and tailoring of bereavement services, improved information on support options, and social/educational initiatives to bolster informal support and ameliorate isolation.

scholarly journals Distributed NLP Framework to create new federated data-sets

2018 ◽  
Vol 3 (4) ◽  
Author(s):  
Simon Thompson
Keyword(s):  
Low Cost ◽  
Cost Effective ◽  
Free Text ◽  
Data Sets ◽  
Digital Information ◽  
Text Data ◽  
Governance Model ◽  
Large Numbers ◽  
Governance Challenges ◽  
The Uk

IntroductionAlthough healthcare systems generate significant amounts of structured data, there remains a untapped wealth of unstructured narrative data. In the UK, 70% of all NHS digital information is in unstructured form. The NHS has no plans to computerise this data, as it is simply would not be cost effective. Objectives and ApproachOur aim was to make all digitised free text within partner organisations accessible for NLP processing for research, while overcoming information governance challenges. We developed a distributed GATE-based NLP platform enabling NLP models to be automatically distributed and materialised against the free text data in each organisation to create new conventional datasets, which can then be transmitted back using an established governance model. This work adds NLP capability to the UK’s National Research Data Appliances, deployed throughout Wales and beyond and uses many open source components enabling a deployment without additional software licence costs, leading to increased potential use cases. ResultsWe have been able to demonstrate a fully federated network of analytical nodes into NHS Wales, which takes the analytical NLP model to the free text data, as opposed to the data having to travel. Under a common, acceptable, governance model, an approval system enables organisations such as health boards to give permission for projects and NLP models to be used against their data. In a proof of concept project, we have run a number of NLP models over large numbers of documents, which the platform has ingested, converted and analysed. We have developed a proposal for a common NLP model definition format to enable models to be interchangeable between different research groups and systems. Sharing/discovery of established NLP models is key deliverable. Conclusion/ImplicationsThe implications of being able to send the query to the data, enables access to this untapped data source, finally enabling the realisation of new datasets, while abiding by any IG framework. The low cost and simplicity will enable a many research opportunities, some of which are already being realised.

scholarly journals Unsupervised Identification of Crime Problems from Police Free-text Data

2020 ◽  
Author(s):  
Daniel Birks ◽  
Alex Coleman ◽  
David Jackson
Keyword(s):  
Crime Reduction ◽  
Free Text ◽  
Topic Modelling ◽  
Modus Operandi ◽  
Text Data ◽  
Machine Learning Methods ◽  
Major Metropolitan Area ◽  
Operational Decision Making ◽  
The Uk ◽  
Crime Classification

We present a novel exploratory application of unsupervised machine-learning methods to identify clusters of specific crime problems from unstructured modus operandi free-text data within a single administrative crime classification. To illustrate our proposed approach, we analyse police recorded free-text narrative descriptions of residential burglaries occurring over a two-year period in a major metropolitan area of the UK. Results of our analyses demonstrate that topic modelling algorithms are capable of clustering substantively different burglary problems without prior knowledge of such groupings. Subsequently, we describe a prototype dashboard that allows replication of our analytical workflow and could be applied to support operational decision making in the identification of specific crime problems. This approach to grouping distinct types of offences within existing offence categories, we argue, has the potential to support crime analysts in proactively analysing large volumes of modus operandi free-text data – with the ultimate aims of developing a greater understanding of crime problems and supporting the design of tailored crime reduction interventions.

scholarly journals Attitudes towards HIV testing via home-sampling kits ordered online (RUClear pilots 2011–12)

2016 ◽  
Vol 38 (3) ◽  
pp. 585-590 ◽  
Author(s):  
Y. Ahmed-Little ◽  
V. Bothra ◽  
D. Cordwell ◽  
D. Freeman Powell ◽  
D. Ellis ◽  
...  
Keyword(s):  
Hiv Testing ◽  
Cost Effective ◽  
Time Of Day ◽  
Hard Copy ◽  
Free Text ◽  
Text Data ◽  
Hiv Test ◽  
Undiagnosed Hiv ◽  
The Uk ◽  
Blood Spot

Background The burden of disease relating to undiagnosed HIV infection is significant in the UK. BHIVA (British HIV Association) recommends population screening in high prevalence areas, expanding outside traditional antenatal/GUM settings. Methods RUClear 2011–12 piloted expanding HIV testing outside traditional settings using home-sampling kits (dry-blood-spot testing) ordered online. Greater Manchester residents (≥age 16) could request testing via an established, online chlamydia testing service (www.ruclear.co.uk). Participant attitudes towards this new service were assessed. Qualitative methods (thematic analysis) were used to analyse free-text data submitted by participants via hard copy questionnaires issued in all testing kits. Results 79.9% (2447/3062) participants completed questionnaires, of which 30.9% (756/2447) provided free-text data. Participants overwhelmingly supported the service, valuing particularly accessibility and convenience, allowing individuals to order tests any time of day and self-sample comfortably at home; avoiding the invasive nature of venipuncture and avoiding the need for face-to-face interaction with health services. The pilot was also clinically and cost-effective. Conclusion Testing via home-sampling kits ordered online (dry-blood-spot testing) was felt to be an acceptable and convenient method for accessing a HIV test. Many individuals undertook HIV testing where they would otherwise not have been tested at all. Expansion of similar services may increase the uptake of HIV testing.

Sign in / Sign up

Export Citation Format

Share Document