Big Voice or Big Data? The Difficult Birth of care.data

2015 ◽  
Vol 3 (1) ◽  
pp. 135-142
Author(s):  
Michael Soljak
Keyword(s):  
Data Protection ◽  
Public Awareness ◽  
Specific Patient ◽  
Healthcare Data ◽  
National Review ◽  
Patient Organisations ◽  
Opt Out ◽  
Patient Consent ◽  
The Uk ◽  
Data Collections

In the United Kingdom (UK), a range of historical national healthcare data collections have occurred, in some cases without a very specific legal basis apart from overarching international and European Union data protection commitments expressed in the UK Data Protection Act 1998. In 2012, the English Government announced that the GP Extraction Service (now care. data), a new central flow of patient-identifiable healthcare data from general practice computer systems, would commence to support healthcare commissioning. Data on the whole population would be extracted, and specific patient consent would not be sought. UK primary healthcare data is characterised by its richness, and comprises demographic, diagnostic, clinical, prescribing, test results and a range of other classes of data. In 2014 the English media and several non-governmental patient organisations began a campaign questioning the care. data initiative, and uncovered quite limited but nonetheless damaging evidence of improper release of patient data from historical data sources. A subsequent national review of information governance and a parliamentary inquiry has delayed care. data implementation, and a patient opt-out is being introduced. Another positive effect is the subsequently much higher public awareness of care.data.

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

2020 ◽  
Author(s):  
Catherine Atkin ◽  
Benjamin L Crosby ◽  
Kevin W Dunn ◽  
Gary Price ◽  
Eliot D Marston ◽  
...  
Keyword(s):  
Public Involvement ◽  
Public Awareness ◽  
Data Use ◽  
Health Data ◽  
Healthcare Staff ◽  
Patient Benefit ◽  
The Public ◽  
Healthcare Data ◽  
Secondary Use ◽  
Opt Out

Introduction: Public awareness and support for secondary health data use may vary by health care experience and participant demographics. England provides an example of a centralised opt-out for secondary use of anonymised health data. We explored the awareness, support for and concerns about anonymised healthcare data secondary use and the NHS data opt-out system amongst patients, carers, healthcare staff and the public within the West Midlands. Methods: A patient and public engagement program was completed, including patient and public workshops, questionnaires regarding anonymised health data use and feedback discussion groups. Results: Central concerns for health data use included unauthorised data re-use, the potential for discrimination and profit generation without patient benefit. Key priorities were projects leading to patient benefit, oversight by the NHS as a trusted organisation, increasing awareness of the NHS data opt-out, and ongoing public/patient involvement. Questionnaires showed 31.8% were aware of the NHS data opt-out. 93.8% were happy for their data to be used for NHS research, 84.8% for academic research and 68.4% by health companies. However, opinion varied with demographics (age, gender or public, patient, NHS staff and volunteers). Agreed action points for health data use were education regarding the National Data Opt-Out, public involvement in data requests, NHS oversight, and transparency. Conclusion: Use of anonymised healthcare data for secondary purposes is acceptable to most patients, carers and healthcare workers. However, awareness is limited, and initiatives to publicise potential benefits are needed amongst patients, healthcare staff and the public.

scholarly journals Population screening for glaucoma in UK: current recommendations and future directions

Eye ◽  
2021 ◽  
Author(s):  
Sana Hamid ◽  
Parul Desai ◽  
Pirro Hysi ◽  
Jennifer M. Burr ◽  
Anthony P. Khawaja
Keyword(s):  
Screening Test ◽  
Vision Loss ◽  
Open Angle Glaucoma ◽  
Public Awareness ◽  
Population Based ◽  
Population Screening ◽  
Effective Population ◽  
Future Directions ◽  
The Future ◽  
The Uk

AbstractEffective population screening for glaucoma would enable earlier diagnosis and prevention of irreversible vision loss. The UK National Screening Committee (NSC) recently published a review that examined the viability, effectiveness and appropriateness of a population-based screening programme for primary open-angle glaucoma (POAG). In our article, we summarise the results of the review and discuss some future directions that may enable effective population screening for glaucoma in the future. Two key questions were addressed by the UK NSC review; is there a valid, accurate screening test for POAG, and does evidence exist that screening reduces morbidity from POAG compared with standard care. Six new studies were identified since the previous 2015 review. The review concluded that screening for glaucoma in adults is not recommended because there is no clear evidence for a sufficiently accurate screening test or for better outcomes with screening compared to current care. The next UK NSC review is due to be conducted in 2023. One challenge for POAG screening is that the relatively low disease prevalence results in too many false-positive referrals, even with an accurate test. In the future, targeted screening of a population subset with a higher prevalence of glaucoma may be effective. Recent developments in POAG polygenic risk prediction and deep learning image analysis offer potential avenues to identifying glaucoma-enriched sub-populations. Until such time, opportunistic case finding through General Ophthalmic Services remains the primary route for identification of glaucoma in the UK and greater public awareness of the service would be of benefit.

scholarly journals Routine use of immunosuppressants is associated with mortality in hospitalised patients with COVID-19

2021 ◽  
Vol 12 ◽  
pp. 204209862098569
Author(s):  
Phyo K. Myint ◽  
Ben Carter ◽  
Fenella Barlow-Pay ◽  
Roxanna Short ◽  
Alice G. Einarsson ◽  
...  
Keyword(s):  
Medical Attention ◽  
Close Monitoring ◽  
Plain Language ◽  
Discharge Data ◽  
Specific Patient ◽  
Risk Of Death ◽  
Hospitalised Patients ◽  
Increased Risk ◽  
The Uk ◽  
The Impact

Background: Whilst there is literature on the impact of SARS viruses in the severely immunosuppressed, less is known about the link between routine immunosuppressant use and outcome in COVID-19. Consequently, guidelines on their use vary depending on specific patient populations. Methods: The study population was drawn from the COPE Study (COVID-19 in Older People), a multicentre observational cohort study, across the UK and Italy. Data were collected between 27 February and 28 April 2020 by trained data-collectors and included all unselected consecutive admissions with COVID-19. Load (name/number of medications) and dosage of immunosuppressant were collected along with other covariate data. Primary outcome was time-to-mortality from the date of admission (or) date of diagnosis, if diagnosis was five or more days after admission. Secondary outcomes were Day-14 mortality and time-to-discharge. Data were analysed with mixed-effects, Cox proportional hazards and logistic regression models using non-users of immunosuppressants as the reference group. Results: In total 1184 patients were eligible for inclusion. The median (IQR) age was 74 (62–83), 676 (57%) were male, and 299 (25.3%) died in hospital (total person follow-up 15,540 days). Most patients exhibited at least one comorbidity, and 113 (~10%) were on immunosuppressants. Any immunosuppressant use was associated with increased mortality: aHR 1.87, 95% CI: 1.30, 2.69 (time to mortality) and aOR 1.71, 95% CI: 1.01–2.88 (14-day mortality). There also appeared to be a dose–response relationship. Conclusion: Despite possible indication bias, until further evidence emerges we recommend adhering to public health measures, a low threshold to seek medical advice and close monitoring of symptoms in those who take immunosuppressants routinely regardless of their indication. However, it should be noted that the inability to control for the underlying condition requiring immunosuppressants is a major limitation, and hence caution should be exercised in interpretation of the results. Plain Language Summary Regular Use of Immune Suppressing Drugs is Associated with Increased Risk of Death in Hospitalised Patients with COVID-19 Background: We do not have much information on how the COVID-19 virus affects patients who use immunosuppressants, drugs which inhibit or reduce the activity of the immune system. There are various conflicting views on whether immune-suppressing drugs are beneficial or detrimental in patients with the disease. Methods: This study collected data from 10 hospitals in the UK and one in Italy between February and April 2020 in order to identify any association between the regular use of immunosuppressant medicines and survival in patients who were admitted to hospital with COVID-19. Results: 1184 patients were included in the study, and 10% of them were using immunosuppressants. Any immunosuppressant use was associated with increased risk of death, and the risk appeared to increase if the dose of the medicine was higher. Conclusion: We therefore recommend that patients who take immunosuppressant medicines routinely should carefully adhere to social distancing measures, and seek medical attention early during the COVID-19 pandemic.

scholarly journals Consultant staffing in UK congenital cardiac services: a 10-year survey of leavers and joiners

Open Heart ◽  
2021 ◽  
Vol 8 (2) ◽  
pp. e001723
Author(s):  
David Steven Crossland ◽  
Richard Ferguson ◽  
Alan Magee ◽  
Petra Jenkins ◽  
Frances A Bulock ◽  
...  
Keyword(s):  
Turnover Rate ◽  
Adult Congenital Heart Disease ◽  
Staff Retention ◽  
High Turnover ◽  
National Review ◽  
Adult Congenital ◽  
Level 1 ◽  
The Uk ◽  
Cardiac Surgeons ◽  
Work Abroad

ObjectivesTo report the numbers of consultant congenital cardiac surgeons and cardiologists who have joined and left UK practice over the last 10 years and explore the reasons for leaving.MethodsRetrospective observational questionnaire study completed between 11 June 2019 and 1 July 2020 by UK level 1 congenital cardiac centres of 10-year consultant staff movement and reasons suggested for leaving UK practice.ResultsAt survey completion there were 218 (202 whole time equivalent (WTE)) consultant cardiologists and surgeons working within level 1 centres made up of 39 (38 WTE) surgeons, 137 (128.5 WTE) paediatric cardiologists, 42 (35.5 WTE) adult congenital heart disease (ACHD) cardiologists. 161 (74%) consultants joined in the last 10 years of whom 103 (64%) were UK trained. There were 91 leavers giving a staff turnover rate 42% (surgeons 56%, paediatric cardiologists 42%, ACHD cardiologists 29%). Of those, leaving 43% moved to work abroad (surgeons 55%, paediatric cardiologists 40%, ACHD cardiologists 67%). Among the 65 reported reasons for leaving 16 were financial, 9 for work life balance, 6 to working conditions within the National Health Service (NHS) and 12 related to the profession in the UK including six specifically highlighting the national review process.ConclusionsThere has been a high turnover rate of consultant staff within UK congenital cardiac services over the last 10 years with almost half of those leaving moving to work overseas. Financial reasons and pressures relating to working in the NHS or the specialty in the UK were commonly reported themes for leaving. This has major implications for future planning and staff retention within this specialised service.

scholarly journals POS0059-PARE DELAY TO DIAGNOSIS IN AXIAL SPONDYLOARTHRITIS – TIME FOR A GOLD STANDARD APPROACH

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 235.3-236
Author(s):  
D. Webb ◽  
K. Gaffney ◽  
R. Sengupta ◽  
S. S. Zhao ◽  
L. Swingler
Keyword(s):  
Primary Care ◽  
Gold Standard ◽  
Axial Spondyloarthritis ◽  
Public Awareness ◽  
Delayed Diagnosis ◽  
Research Support ◽  
Professional Societies ◽  
Standard Time ◽  
Time To Diagnosis ◽  
The Uk

Background:In the UK, the average time to diagnosis of axial SpA is 8.5 years (1). There is little evidence this has improved, despite the acceptance of MRI use in diagnosis (2). A recent review identified significant clinical, economic and humanistic burden from delayed diagnosis (3). Urgent action is needed to ensure delayed diagnosis is not normalized.Objectives:We created a proposal for a Gold Standard time to diagnosis for axial SpA and a national implementation plan (4) through consensus development with patients, healthcare professionals and professional bodies.Methods:A.A scoping literature review identifying where delays occur, from first symptom onset to diagnosis by a rheumatologist, and potential solutions. From this, a summary report / draft plan was produced for consultationB.A national consultation survey to elicit views on the proposals from clinicians, healthcare professionals, professional societies and patientsC.Structured feedback to written proposals via e-consultation with clinicians and patientsD.A consensus development workshop to finalise the Gold Standard and implementation plan.Results:The literature review identified four delays:1. People do not know axial SpA may be a cause of their chronic back pain2. Primary care practitioners may not recognise features of axial SpA3. People may be referred to non-rheumatologists who may not recognise axial SpA promptly4. Rheumatology and radiology teams may not optimally request or interpret investigations.202 participants responded to the summary report (74% patients, 21% healthcare professsionals, 5% professional societies). All supported the principles behind the gold standard time to diagnosis. Qualitive analysis confirmed agreement with the proposed solutions, underscoring the importance of education and visibility for axial SpA within primary care and increased public awareness. Additional proposals were suggested, including a tool in primary care to run audits on IT systems.40 clinicians contributed to the e-consultation and 55 clinicians, policy makers, social marketing experts, health journalists and patients attended the consensus workshop. Consensus was reached on a gold standard time to diagnosis of one year, and the principles, key components and phasing of the implemention plan. This included: public awareness about axial SpA symptoms; a primary care clinical champions programme; creating a referral pathway from primary care direct to rheumatology; a secondary care service educational programme.Conclusion:There is consensus from UK axial SpA clinicians, patients and professional societies on the need for a Gold Standard time to diagnosis of axial SpA of one year, so that patients can live happy, healthy and productive lives.References:[1]Hamilton L, Gilbert A, Skerett J, et al. Services for people with ankylosing spondylitis in the UK - a survey of rheumatologists and patients. Rheumatology 2011:50:1991[2]Sykes MP, Doll H, R Sengupta, Gaffney, K. Delay to diagnosis in axial spondyloarthritis: are we improving in the UK? Rheumatology, July 2015[3]Yi E, Ahuja A, Rajput T, et al. Clinical, Economic, and Humanistic Burden Associated With Delayed Diagnosis of Axial Spondyloarthritis: A Systematic Review. Rheumatol Ther. 2020 Mar;7(1):65–87.[4]Webb D, Zhao S, Whalley S, et al. Gold Standard Time to Diagnosis in axial Spondyloarthritis: Consultation Document. 2020, NASS.Disclosure of Interests:Dale Webb Speakers bureau: Janssen, Novartis, Grant/research support from: NASS receives grants from AbbVie, Biogen, Eli Lilly, Novartis and UCB, Karl Gaffney Speakers bureau: Abbvie, Lilly, Novartis, UCB, Consultant of: Abbvie, Celltrion, Lilly, Grant/research support from: Abbvie, Pfizer, Lilly, UCB, Raj Sengupta Speakers bureau: Abbvie, Biogen, Celgene, Novartis, Roche, UCB, Consultant of: Advisory boards for Abbvie, Biogen, Novartis, UCB, Grant/research support from: Abbvie, Celgene, Novartis, Sizheng Steven Zhao: None declared, Lisa Swingler Grant/research support from: NASS receives grants from AbbVie, Biogen, Eli Lilly, Novartis and UCB.

Can you measure IT? The UK experience of TechQual+

2014 ◽  
Vol 15 (1/2) ◽  
pp. 32-40 ◽  
Author(s):  
Ian Hall ◽  
Jessica Stephens ◽  
Sarah Kennedy
Keyword(s):  
Data Protection ◽  
Senior Managers ◽  
Web Based ◽  
Content Type ◽  
Survey Tool ◽  
Technology Services ◽  
Protection Legislation ◽  
The Uk ◽  
The University

Purpose – The University of York Library, part of its Information Directorate, has successfully run an annual user survey using LibQUAL+ since 2008. The tool has proven invaluable in understanding user needs and measuring improvements. The ability to benchmark performance has been well received by university senior managers. Following this positive experience, the Directorate piloted the TechQual+ survey to assess its technology services. TechQual+ is a total market-survey tool developed on the same principles as LibQUAL+. York was the first university in the UK to do this. The purpose of this paper is to reflect upon the experience and its relevance to information services. Design/methodology/approach – A team was established to co-ordinate the distribution of the survey, which was e-mailed to all university members. The survey was conducted over a period of three weeks in December 2011 using their web-based tool. The team worked with the survey providers to make amendments in order to comply with UK Data Protection legislation. Findings – The TechQual+ tool provided a rich set of data on the IT needs of University of York students and staff, including a wealth of comments. As the first use of the tool in the UK, a number of outcomes arose from the pilot: methods for running the survey in order to meet UK data protection requirements; feedback on the tool itself, with some questions not understood from a UK context; a rich set of results data, with some similarities (and several differences) to those available through LibQUAL+. Originality/value – The paper presents the first application of the TechQual+ survey in UK and discusses the issues faced when implementing it in a UK context. The case study will be of interest to libraries or converged services interested in assessing their IT provision.

The effect of feeding different protein sources on intake, milk yield, milk composition and liveweight in high yielding Holstein cows

1998 ◽  
Vol 1998 ◽  
pp. 202-202
Author(s):  
R J Mansbridge ◽  
J S Blake
Keyword(s):  
Weight Loss ◽  
Public Awareness ◽  
Block Design ◽  
Milk Composition ◽  
Holstein Cows ◽  
High Quality ◽  
Protein Sources ◽  
Sufficient Energy ◽  
Soyabean Meal ◽  
The Uk

High yielding cows require high quality diets to sustain milk yields and to minimise weight loss, metabolic disorders and fertility problems. Traditionally, these diets have contained fishmeal and soyabean meal, both widely regarded as good sources of high quality, digestible undegraded protein (DUP). However, there is increasing concern over the sustainability of world fish stocks and the BSE scare has increased public awareness to the extent that feeding animal protein to herbivores may become unacceptable in me future. This in turn has driven up the price of high quality imported vegetable proteins, such as soyabean meal. The aim of this study was to investigate whether fishmeal and soyabean meal could be replaced in the diet of high yielding cows, with protein sources grown in the UKIn a 12 week randomised block design experiment, 60 muciparous Holstein cows, on average 28 days calved at the start of the study, were fed total mixed rations based on grass silage and one of five protein mixtures. These were either 0.5 kg DM fishmeal + 0.7 kg DM soya + 2.5 kg DM rapeseed (PC), 1.3 kg DM soyabean + 2.3 kg DM rapeseed (PI), 3.8 kg DM lupins + 2.3 kg DM heat treated rapeseed (P2), 3.6 kg DM linseed + 1.4 kg DM rapeseed (P3) or 5.8 kg DM rapeseed (P4). Each diet was formulated to supply sufficient energy and metabolisable protein for maintenance + 43 litres and 0.75kg/d weight loss and to contain similiar levels of DUP (AFRC, 1993).

Competition Litigation

2019 ◽  
Keyword(s):  
Class Action ◽  
Criminal Proceedings ◽  
Applicable Law ◽  
Class Actions ◽  
Joint And Several Liability ◽  
Litigation Process ◽  
Opt Out ◽  
Full Analysis ◽  
Deutsche Bahn ◽  
The Uk

This book provides a comprehensive guide to all aspects of competition litigation in the UK. It covers both practice and procedure in the UK courts as well as in the Competition Appeal Tribunal. All aspects of case work are covered, from commencement of proceedings, group litigation, jurisdiction, applicable law, evidence, remedies, costs, and arbitration to criminal proceedings, giving competition lawyers a full analysis of the litigation process. There are also new chapters dedicated to the practice and procedure in Scotland and Northern Ireland.Fully updated in its second edition, coverage reflects important amendments to the Competition Act 1998; for example, the introduction of rules for class actions in the Competition Appeal Tribunal. As a result of the implementation of the Damages Directive, Directive 2014/204, new rules have been introduced for disclosure and joint and several liability. The book also covers the new cartel offence, which no longer has the mens rea of dishonesty.The new edition covers a range of important new cases: to name but a few, Sainsbury’s v MasterCard on the pass-on defence; Dorothy Gibson and Walter Merricks on opt-out class action; Cooper Tire and Toshiba Carrier on anchor defendants; and Deutsche Bahn on applicable law.

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