scholarly journals Definitely Maybe: New Governance of Uncertainty and Risk in Patient Group Involvement with UK Guidance on Testing for Lyme Disease

2021 ◽  
pp. 097172182096024
Author(s):  
Alex Faulkner ◽  
Kate Bloor ◽  
Vahsti Hale
Keyword(s):  
Lyme Disease ◽  
Patient Group ◽  
New Governance ◽  
Difficult Patient ◽  
Consultation Process ◽  
Diagnostic Uncertainty ◽  
Policy Actors ◽  
Patient Groups ◽  
Evidence Review ◽  
The Uk

States that claim responsibility for citizens’ healthcare try to deal with knowledge uncertainties while preserving a duty of care. Production of clinical guidelines in disputed medical conditions or where uncertainty is high, is difficult. Patient groups may advocate non-credentialed evidence, contribute to debates and form alliances with established policy actors. In this context, Lyme disease, especially highly contested ‘chronic’ Lyme disease is a good case with which to examine how official governance institutions are managing diagnostic uncertainty and evidence for tests. The healthcare state has been provoked to develop extensive policy for Lyme disease. In the UK, national Health Technology Assessment agency, NICE, began a consultation process in 2016. NICE and other policy actors are moving towards more participatory modes of decision-making. The article analyses NICE’s recently published guidelines and consultation documents; patient groups’ contributions; observations of consultations and of evidence review processes; and recent Department of Health systematic reviews, including patient group participation. We draw on concepts of participatory governance, patient group activism and guideline involvement. We find an increased level of participation by patient groups in recent policy and evidence review processes, and hence legitimation of them as ‘stakeholders’, alongside a strengthened state position on pre-existing diagnostic and testing standards.

scholarly journals Unmasked: an insight into three patients’ rare disease experiences during the COVID-19 pandemic

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Catriona Chaplin
Keyword(s):  
Rare Disease ◽  
Patient Group ◽  
Support Group ◽  
Group I ◽  
Patient Groups ◽  
The Uk ◽  
Insight Into ◽  
Disease Community

AbstractThis article describes my reflections of speaking with three patients and their families living with mastocytosis, who I was introduced to through the UK Mastocytosis Support Group. I discuss the various ways in which the condition affects their day-to-day lives and how this has changed during the Covid-19 pandemic. I have tried to give an insight into the particular difficulties that this patient group faces, both during and before the pandemic, whilst also considering how these challenges may resonate more widely with other patient groups in the rare disease community. Pseudonyms are used throughout to protect patient anonymity.

Net zero carbon: Energy performance targets for offices

2021 ◽  
Vol 42 (3) ◽  
pp. 349-369
Author(s):  
Robert Cohen ◽  
Karl Desai ◽  
Jennifer Elias ◽  
Richard Twinn
Keyword(s):  
Energy Efficiency ◽  
Minimum Energy ◽  
Energy Performance ◽  
Consultation Process ◽  
Net Zero ◽  
Extensive Consultation ◽  
Operational Energy ◽  
Legislative Framework ◽  
Zero Carbon ◽  
The Uk

The UKGBC Net Zero Carbon Buildings Framework was published in April 2019 following an industry task group and extensive consultation process. The framework acts as guidance for achieving net zero carbon for operational energy and construction emissions, with a whole life carbon approach to be developed in the future. In consultation with industry, further detail and stricter requirements are being developed over time. In October 2019, proposals were set out for industry consultation on minimum energy efficiency targets for new and existing commercial office buildings seeking to achieve net zero carbon status for operational energy today, based on the performance levels that all buildings will be required to achieve by 2050. This was complemented by modelling work undertaken by the LETI network looking into net zero carbon requirements for new buildings. In January 2020 UKGBC published its guidance on the levels of energy performance that offices should target to achieve net zero and a trajectory for getting there by 2035. This paper describes the methodology behind and industry perspectives on UKGBC’s proposals which aim to predict the reduction in building energy intensity required if the UK’s economy is to be fully-powered by zero carbon energy in 2050. Practical application: Many developers and investors seeking to procure new commercial offices or undertake major refurbishments of existing offices are engaging with the ‘net zero carbon’ agenda, now intrinsic to the legislative framework for economic activity in the UK. A UKGBC initiative effectively filled a vacuum by defining a set of requirements including energy efficiency thresholds for commercial offices in the UK to be considered ‘net zero carbon’. This paper provides all stakeholders with a detailed justification for the level of these thresholds and what might be done to achieve them. A worked example details one possible solution for a new office.

scholarly journals Social media and sentiment in bioenergy consultation

2016 ◽  
Vol 10 (1) ◽  
pp. 87-98 ◽  
Author(s):  
Victoria Uren ◽  
Daniel Wright ◽  
James Scott ◽  
Yulan He ◽  
Hassan Saif
Keyword(s):  
Social Media ◽  
New Media ◽  
Sentiment Analysis ◽  
Opinion Mining ◽  
Public Consultation ◽  
Short Paper ◽  
Consultation Process ◽  
Content Type ◽  
The Public ◽  
The Uk

Purpose – This paper aims to address the following challenge: the push to widen participation in public consultation suggests social media as an additional mechanism through which to engage the public. Bioenergy companies need to build their capacity to communicate in these new media and to monitor the attitudes of the public and opposition organizations towards energy development projects. Design/methodology/approach – This short paper outlines the planning issues bioenergy developments face and the main methods of communication used in the public consultation process in the UK. The potential role of social media in communication with stakeholders is identified. The capacity of sentiment analysis to mine opinions from social media is summarised and illustrated using a sample of tweets containing the term “bioenergy”. Findings – Social media have the potential to improve information flows between stakeholders and developers. Sentiment analysis is a viable methodology, which bioenergy companies should be using to measure public opinion in the consultation process. Preliminary analysis shows promising results. Research limitations/implications – Analysis is preliminary and based on a small dataset. It is intended only to illustrate the potential of sentiment analysis and not to draw general conclusions about the bioenergy sector. Social implications – Social media have the potential to open access to the consultation process and help bioenergy companies to make use of waste for energy developments. Originality/value – Opinion mining, though established in marketing and political analysis, is not yet systematically applied as a planning consultation tool. This is a missed opportunity.

scholarly journals Liaison psychiatry services in south England

2010 ◽  
Vol 34 (7) ◽  
pp. 270-273 ◽  
Author(s):  
Jackie Gordon ◽  
Sonia Wolf
Keyword(s):  
Royal College ◽  
Full Time ◽  
The South ◽  
Liaison Psychiatry ◽  
Hospital Size ◽  
Staffing Levels ◽  
The Past ◽  
Patient Groups ◽  
The Uk ◽  
And Function

Aims and methodTo investigate liaison psychiatry services across 38 acute trusts in the south of England. We used a telephone survey and compared the results to service structure and function as recommended by the Royal College of Physicians and the Royal College of Psychiatrists.ResultsApproximately two-thirds of trusts surveyed had a dedicated liaison service and this was not significantly related to hospital size. Most liaison teams were understaffed in all disciplines and only a third had a full-time consultant. Services for specialist patient groups were generally well provided for; 37% of teams had been created in the past 5 years and 33% were planning to increase their staffing levels in future.Clinical implicationsLiaison services in the south of England are similar to those in other parts of the UK that have been surveyed. Although the services did not meet the Colleges' recommendations, our study shows some recent growth and development in this specialty.

scholarly journals Lyme disease in the UK: clinical and laboratory features and response to treatment

2010 ◽  
Vol 10 (5) ◽  
pp. 454-457 ◽  
Author(s):  
Richard Dillon ◽  
Susan O'Connell ◽  
Stephen Wright
Keyword(s):  
Lyme Disease ◽  
Response To Treatment ◽  
Laboratory Features ◽  
The Uk

Competition and compromise in negotiating the new governance of medical performance: the clinical governance and revalidation policies in the UK

2009 ◽  
Vol 4 (3) ◽  
pp. 283-303 ◽  
Author(s):  
LAURA FENTON ◽  
BRIAN SALTER
Keyword(s):  
National Health Service ◽  
Health Service ◽  
Institutional Context ◽  
Clinical Governance ◽  
New Governance ◽  
Clinical Standards ◽  
High Profile ◽  
Chain Of Command ◽  
The Government ◽  
The Uk

AbstractThis article explores the development of two policies for the governance of medical performance in the UK: the Department of Health's (DH) clinical governance policy and the medical profession's revalidation policy. After discussing the institutional context in which each of these policies emerged, we examine how and why they were constructed. While the clinical governance policy was in large part a swift reaction to high-profile cases of medical misconduct in the late 1990s, revalidation was the profession's response to the politicisation of its self-regulatory apparatus. The profession took notably longer than the DH to piece together its policy as a result of internal disagreements about the role clinical standards should play in the evaluation of a doctor's fitness to practice. Following the Fifth Report of the Shipman Inquiry in late 2004, the government stepped in and eventually introduced legislation that modifies the profession's policy. With clinical governance, the state – via arms-length regulatory organisations – has entered the clinic in new ways, strengthening hierarchy-based forms of governance in the governance of medical performance. However, the success of hierarchical forms of governance is likely to be restricted by the lack of a clear system of sanctioning and the state's reliance on a lengthy chain of command in the National Health Service for the implementation of clinical standards.

Development and Testing of the UK SF-12

1997 ◽  
Vol 2 (1) ◽  
pp. 14-18 ◽  
Author(s):  
Crispin Jenkinson ◽  
Richard Layte
Keyword(s):  
Health Status ◽  
Short Form ◽  
Community Sample ◽  
Mental Component Summary Score ◽  
Well Being ◽  
Summary Score ◽  
Sf 36 ◽  
Patient Groups ◽  
The Uk ◽  
Component Scores

Objectives: The 36 item short form health survey (SF-36) has proved to be of use in a variety of settings where a short generic health measure of patient-assessed outcome is required. This measure can provide an eight dimension profile of health status, and two summary scores assessing physical function and mental well-being. The developers of the SF-36 in America have developed algorithms to yield the two summary component scores in a questionnaire containing only one-third of the original 36 items, the SF-12. This paper documents the construction of the UK SF-12 summary measures from a large-scale dataset from the UK in which the SF-36, together with other questions on health and lifestyles, was sent to randomly selected members of the population. Using these data we attempt here to replicate the findings of the SF-36 developers in the UK setting, and then to assess the use of SF-12 summary scores in a variety of clinical conditions. Methods: Factor analytical methods were used to derive the weights used to construct the physical and mental component scales from the SF-36. Regression methods were used to weight the 12 items recommended by the developers to construct the SF-12 physical and mental component scores. This analysis was undertaken on a large community sample ( n = 9332), and then the results of the SF-36 and SF-12 were compared across diverse patient groups (Parkinson's disease, congestive heart failure, sleep apnoea, benign prostatic hypertrophy). Results: Factor analysis of the SF-36 produced a two factor solution. The factor loadings were used to weight the physical component summary score (PCS-36) and mental component summary score (MCS-36). Results gained from the use of these measures were compared with results gained from the PCS-12 and MCS-12, and were found to be highly correlated (PCS: ρ = 0.94, p < 0.001; MCS: ρ = 0.96, p < 0.001), and produce remarkably similar results, both in the community sample and across a variety of patient groups. Conclusions: The SF-12 is able to produce the two summary scales originally developed from the SF-36 with considerable accuracy and yet with far less respondent burden. Consequently, the SF-12 may be an instrument of choice where a short generic measure providing summary information on physical and mental health status is required. Crispin Jenkinson DPhil, Deputy Director

scholarly journals Exploring psychiatrists’ perspectives of working with patients with dissociative seizures in the UK healthcare system as part of the CODES trial: a qualitative study

BMJ Open ◽  
2019 ◽  
Vol 9 (5) ◽  
pp. e026493 ◽  
Author(s):  
Harriet Jordan ◽  
Sarah Feehan ◽  
Iain Perdue ◽  
Joanna Murray ◽  
Laura H Goldstein
Keyword(s):  
Qualitative Study ◽  
Patient Group ◽  
Controlled Trial ◽  
Improve Patient Care ◽  
Knowledge Gap ◽  
Link Type ◽  
Interpersonal Difficulties ◽  
Randomised Controlled ◽  
The Uk ◽  
Dissociative Seizures

ObjectiveThere is currently limited research exploring healthcare professionals’ (HCPs) experiences of working with patients with dissociative seizures (DS). Existing studies do not focus on the role of psychiatrists in treating this complex condition. The objective of this study was to gain an understanding of UK-based psychiatrists’ experiences of the DS patient group. Against the backdrop of a UK-wide randomised controlled trial (RCT), the focus was broadened to encompass issues arising in everyday practice with the DS patient group.Design, participants and methodsA qualitative study using semistructured interviews was undertaken with 10 psychiatrists currently working with DS patients within the context of a large RCT investigating treatments for DS. Thematic analysis was used to identify key themes and subthemes.SettingThe psychiatrists were working in Liaison or Neuropsychiatry services in England.ResultsThe key themes identified were other HCPs’ attitudes to DS and the challenges of the DS patient group. There is a clear knowledge gap regarding DS for many HCPs and other clinical services can be reluctant to take referrals for this patient group. Important challenges posed by this patient group included avoidance (of difficult emotions and help), alexithymia and interpersonal difficulties. Difficulties with alexithymia meant DS patients could struggle to identify triggers for their seizures and to express their emotions. Interpersonal difficulties raised included difficulties in attachment with both HCPs and family members.ConclusionsA knowledge gap for HCPs regarding DS has been identified and needs to be addressed to improve patient care. Given the complexity of the patient group and that clinicians from multiple disciplines will come into contact with DS patients, it is essential for any educational strategy to be implemented across the whole range of specialties, and to account for those already in practice as well as future trainees.Trial registration numberISRCTN05681227;NCT02325544; Pre-results.

scholarly journals Oxygen Consumption of Erythrocytes from Patients with Various Thyroid Conditions Related to Their Respective Serum Protein—Bound Iodine Concentrations

Blood ◽  
1954 ◽  
Vol 9 (10) ◽  
pp. 953-958 ◽  
Author(s):  
LUIS ANGELONE ◽  
DAVID H. WATKINS ◽  
CLIFFORD A. ANGERER
Keyword(s):  
Oxygen Consumption ◽  
Serum Protein ◽  
Patient Group ◽  
Phosphate Solution ◽  
Exponential Order ◽  
Group A ◽  
Patient Groups ◽  
The Mean ◽  
Cent Change

Abstract Blood was obtained from patients who were divided into four groups: (A) euthyroid, (B) untreated hyperthyroid, (C) iodine-treated hyperthyroid and (D) hypothyroid. The erythrocytes from each patient group were washed and resuspended in Krebs-phosphate solution for study by the Warburg respirometric technic. When the erythrocytes obtained from patient groups B, C and D are compared with group A (control), a +92 per cent, +23 per cent and -15 per cent change is noted, respectively, in their mean QOO2 values when QOO2 values for erythrocytes for each patient in each patient group (excluding group C) are plotted relative to their respective serum PBI concentration (µg. per cent), a curve of exponential order appears to be the curve of best probable fit for these data. The mean QOO2 value for the iodine-treated hyperthyroid group falls on the ordinate of this curve (fig. 1) between the euthyroid and untreated hyperthyroid groups, though the mean serum PBI value (abscissa), of course, has no meaning for this group.

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