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Patient and public involvement (PPI) plays a crucial role in ensuring research is carried out in conjunction with the people that it will impact upon. In this article, we present our experiences and reflections from working collaboratively with patients and public through the lifetime of an National Institute for Health Research (NIHR) programme grant; the Chronic Headache Education and Self-management Study (CHESS) which took place between 2015 and 2020.
PPI over the course of CHESS:
We worked closely with three leading UK migraine charities and a lay advisory group throughout the programme. We followed NIHR standards and used the Guidance for Reporting Involvement of Patients and the Public checklist. We consulted our PPI contacts using a variety of methods depending on the phase of the study and the nature of the request. This included emails, discussions, and face-to-face contact.
PPI members contributed throughout the study in the programme development, in the grant application, ethics documentation, and trial oversight. During the feasibility study; in supporting the development of a classification interview for chronic headache by participating in a headache classification conference, assessing the relevance, and acceptability of patient-reported outcome measures by helping to analyse cognitive interview data, and testing the smartphone application making suggestions on how best to present the summary of data collected for participants. Due to PPI contribution, the content and duration of the study intervention were adapted and a Delphi study with consensus meeting developed a core outcome set for migraine studies.
The involvement of the public and patients in CHESS has allowed us to shape its overall design, intervention development, and establish a core outcome set for future migraine studies. We have reflected on many learning points for the future application of PPI.
Seed retention, and ultimately seed shatter, are extremely important for the efficacy of harvest weed seed control (HWSC) and likely influenced by various agro-ecological and environmental factors. Field studies investigated seed shattering phenology of 22 weed species across three soybean [Glycine max (L.) Merr.] producing regions in the US. We further evaluated the potential drivers of seed shatter in terms of weather conditions, growing degree days, and plant biomass. Based on the results, weather conditions had no consistent impact on weed seed shatter. However, there was a positive correlation between individual weed plant biomass and delayed weed-seed shattering rates during harvest. This work demonstrates that HWSC can potentially reduce weed seedbank inputs of plants that have escaped early season management practices and retained seed through harvest. However, smaller individuals of plants within the same population that shatter seed before harvest pose a risk of escaping early season management and HWSC.
Healthcare personnel (HCP) with unprotected exposures to aerosol-generating procedures (AGPs) on patients with coronavirus disease 2019 (COVID-19) are at risk of infection with severe acute respiratory coronavirus virus 2 (SARS-CoV-2). A retrospective review at an academic medical center demonstrated an infection rate of <1% among HCP involved in AGPs without a respirator and/or eye protection.
Social cognition is frequently impaired following an acquired brain injury (ABI) but often overlooked in clinical assessments. There are few validated and appropriate measures of social cognitive abilities for ABI patients. The current study examined the validity of the Edinburgh Social Cognition Test (ESCoT, Baksh et al., 2018) in measuring social cognition following an ABI.
Forty-one patients with ABI were recruited from a rehabilitation service and completed measures of general ability, executive functions and social cognition (Faux Pas; FP, Reading the Mind in the Eyes; RME, Social Norms Questionnaire; SNQ and the ESCoT). Forty-one controls matched on age, sex and years of education also performed the RME, SNQ and ESCoT.
A diagnosis of ABI was significantly associated with poorer performance on all ESCoT measures and RME while adjusting for age, sex and years of education. In ABI patients, the ESCoT showed good internal consistency with its subcomponents and performance correlated with the other measures of social cognition demonstrating convergent validity. Better Trail Making Test performance predicted better ESCoT total, RME and SNQ scores. Higher TOPF IQ was associated with higher RME scores, while higher WAIS-IV working memory predicted better FP performance.
The ESCoT is a brief, valid and internally consistent assessment tool able to detect social cognition deficits in neurological patients. Given the prevalence of social cognition deficits in ABI and the marked impact these can have on an individual’s recovery, this assessment can be a helpful addition to a comprehensive neuropsychological assessment.
Ecclesiastical courts were rightly seen by nineteenth-century thinkers as a closed shop, a court system separate from the general court system which had its own proctors, advocates and judges. These courts had jurisdiction over the laity in a number of matters such as marriage, burial and probate of wills, though this changed during the century. The chapter describes the attempts at reform, and the difficulties with discipline of the laity as well as clergy that were addressed in the course of legislative change. Appeal lay with the secular courts and here too lay problems, where the Judicial Committee of the Privy Council served as the final court of appeal
The Conclusion looks at what has happened from the twentieth century onwards, with social change affecting the relationship between Parliament and the Church of England. It traces the history of increasing lay involvement in a society that is growing ever more multicultural and multifaith. The Church of England has entered actively into ecumenical dialogue and inter-church cooperation. The wording of the liturgy has been modernised. The Conclusion looks at a series of attempts, still in train, to make more satisfactory provision for clergy discipline. It reviews the changes in property law as it affects the Church of England and modern Faculty jurisdiction. Parliament now exercises only a light touch in the making of the Church’s legislation.
This chapter sets the social and ecclesiastical scene. It introduces the place of ecclesiastical law in the law of England. It explores the changing place of the Church of England in the life of the nation from the early nineteenth century, the role of the universities in educating future clergy and the significant place of the bishops in political as well as pastoral and spiritual leadership. It describes the need for more churches as the Industrial Revolution took a growing proportion of the population from the country into the towns. It introduces the challenge of the Dissenters with their rival chapels and the complexities of applying ecclesiastical law when there were controversies.
Nineteenth-century England had a large population of Christians who did not belong to the Church of England, and a proportion of Jews, though as yet almost no Muslims. The civic position of Jews had partly improved by this time. There was growing interest in the problems presented by what would now be thought of as ‘ecumenical relations’, with the first Lambeth Conferences giving the matter consideration, though excluding the Roman Catholics. This chapter explores the relationships between the main categories of non-Anglican Protestant Christians, including the ways in which they might be regarded as being part of the Church, that is, having an authentic ecclesial identity. The refusal of the Friends (Quakers) to take oaths was accommodated and the rights of Roman Catholics were thought through, with particular reference to Ireland. Dissenting academies were providing an excellent higher education. Problems were arising about the payment of clerical income and the costs of maintaining churches because non-Anglicans resented having to make a contribution.
This chapter discusses a series of high-profile cases in which significant disputes arose involving the application of ecclesiastical law. It begins with Parliament’s debates on its role and authority in this area as it attempted more than once to frame legislation for clergy discipline and the discussions in Convocation. It considers the Gompertz case, raising questions about the role of the bishop; the contrasting churchmanships of Evangelicals and Tractarians; and the controversy about biblical interpretation prompted by the publication of Essays and Reviews. The case of James Shore tested the law on the effect of a clergyman’s finding his opinions had changed to such an extent that he was no longer a member of the Church of England, while still effectively retaining his Anglican priesthood. The chapter also covers the cases of William Bennett and the ‘real presence’, and George Denison’s lengthy dispute with the Bishop of Exeter on the effect of baptism. It ends with the case of Alexander Mackonochie and controversy over the regulation of public worship.
This chapter turns to the experiences of the laity when they found themselves in ecclesiastical courts in disputes over marriage, wills and burial, disorderly behaviour, or unacceptable use of language: speech crimes: brawling, defamation and blasphemy. It looks at examples of the costs and consequences to the laity of finding themselves in ecclesiastical courts, and the role of the debtors’ prisons.
This chapter explores the history and extent of the jurisdiction of Parliament over the ecclesiastical law of the Church of England and the role of bishops sitting as members of the House of Lords, some of them prominent and controversial. Among the ecclesiastical lawyers were several who served as Members of Parliament. The nineteenth century saw the revival of Convocation, the Church’s own Parliament, and the chapter follows it in its efforts to re-establish itself. The Church owned a great deal of property, and lay property holders had opportunities to exploit their rights to the gift of clerical livings. There were accusations of simony. In both contexts there were property disputes. All this sharpened the long-standing question of the relationship between temporalities which were the proper business of secular law and the spiritualities which were not.