Implementing public involvement standards in cerebral palsy register research

BACKGROUND: In 2018, the National Institute for Health Research launched Draft Standards for Public Involvement in Research. The Northern Ireland Cerebral Palsy Register (NICPR) was competitively selected as a “test-bed” project to pilot the Draft Standards over a one-year period. AIM: This perspective paper aims to describe the NICPR's experience of piloting the Draft Standards for Public Involvement in Research, highlighting successes and challenges. METHOD: Three of the six Draft Standards were piloted from April 2018 to April 2019: Standard 2 “working together”, Standard 4 “communications” and Standard 5, “impact”. RESULTS: Implementation of Standard 2 resulted in formation of a dedicated Public Involvement Group. Standard 4 was implemented by revision of the NICPR's Privacy Notice and development of the NICPR website. Standard 5 was not implemented during the test-bed pilot period. DISCUSSION: Benefits of use of the Draft Standards in cerebral palsy register research included development of relationships, improving quality, accessibility and relevance of NICPR materials, increasing skills and confidence, networking opportunities, advocating for others and feeling empowered to shape cerebral palsy research. Challenges included administrative issues, absence of dedicated and sustained funding, limitations in the availability and applicability of public involvement training and the time required for meaningful public involvement. CONCLUSIONS: Standards for Public Involvement provide a useful framework for structuring and embedding meaningful public involvement. Sustained, authentic public involvement in cerebral palsy register research ensures that people affected by the condition are empowered to engage, inform, develop and lead research that meets their needs

Towards a Digital Pedagogy of Inclusive Active Distance Learning

This chapter focuses upon the concept of Active Distance Learning  [ADL] as a pedagogical approach to designing and teaching in a remote learning setting. This concept has been developed at the University of Northampton to complement their pedagogical approach of Active Blended Learning. ADL combines sense-making activities with focused and engaging interactions in synchronous and asynchronous online settings.  It engages students in knowledge construction, reflection and critique, the development of learner autonomy and the achievement of learning outcomes. The chapter also draws upon the Universal Design for Learning Framework for making ADL inclusive. This approach enables learning to be designed or modified for the greatest diversity of learners possible. This chapter is aligned with contemporary social constructivist, constructionist and connectivist learning theories that emphasise the social situatedness of learning in communities of practice where learners feel empowered to co-create knowledge. Key pedagogical approaches are mapped with the affordances of a range of digital tools  to exemplify inclusive ADL practice. A set of vignettes from practice demonstrates digital pedagogies and tools in action, showing how they can add pace, collaboration and engagement to synchronous and asynchronous online learning

Towards a Digital Pedagogy of Inclusive Active Distance Learning

This chapter focuses upon the concept of Active Distance Learning  [ADL] as a pedagogical approach to designing and teaching in a remote learning setting. This concept has been developed at the University of Northampton to complement their pedagogical approach of Active Blended Learning. ADL combines sense-making activities with focused and engaging interactions in synchronous and asynchronous online settings.  It engages students in knowledge construction, reflection and critique, the development of learner autonomy and the achievement of learning outcomes. The chapter also draws upon the Universal Design for Learning Framework for making ADL inclusive. This approach enables learning to be designed or modified for the greatest diversity of learners possible. This chapter is aligned with contemporary social constructivist, constructionist and connectivist learning theories that emphasise the social situatedness of learning in communities of practice where learners feel empowered to co-create knowledge. Key pedagogical approaches are mapped with the affordances of a range of digital tools  to exemplify inclusive ADL practice. A set of vignettes from practice demonstrates digital pedagogies and tools in action, showing how they can add pace, collaboration and engagement to synchronous and asynchronous online learning

The information needs of people living with ankylosing spondylitis: a questionnaire survey

<p>BACKGROUND:Today, health care is patient-centred with patients more involved in medical decision making and taking an active role in managing their disease. It is important that patients are appropriately informed about their condition and that their health care needs are met. We examine the information utilisation, sources and needs of people with ankylosing spondylitis (AS).</p> <p>METHODS: Participants in an existing AS cohort study were asked to complete a postal or online questionnaire containing closed and open-ended questions, regarding their information access and needs. Participants were stratified by age and descriptive statistics were performed using STATA 11, while thematic analysis was performed on open-ended question narratives. Qualitative data was handled in Microsoft Access and explored for emerging themes and patterns of experiences.</p> <p>RESULTS: Despite 73% of respondents having internet access, only 49% used the internet to access information regarding AS. Even then, this was only infrequently. Only 50% of respondents reported accessing written information about AS, which was obtained mainly in specialist clinics. Women were more likely than men to access information (63% (women) 46% (men)) regardless of the source, while younger patients were more likely to use online sources. The main source of non-written information was the rheumatologist. Overall, the respondents felt there was sufficient information available, but there was a perception that the tone was often too negative. The majority (95%) of people would like to receive a regular newsletter about AS, containing positive practical and local information. Suggestions were also made for more information about AS to be made available to non-specialist medical professionals and the general public.</p> <p>CONCLUSIONS: There appears to be sufficient information available for people with AS in the UK and this is mostly accessed by younger AS patients. Many patients, particularly men, choose not to access AS information and concerns were raised about its negative tone. Patients still rely on written and verbal information from their specialists. Future initiatives should focus on the delivery of more positive information, targeting younger participants in particular and increasing the awareness in the general population and wider non-specialist medical community.</p&gt

Optimising use of electronic health records to describe the presentation of rheumatoid arthritis in primary care: a strategy for developing code lists

Background Research using electronic health records (EHRs) relies heavily on coded clinical data. Due to variation in coding practices, it can be difficult to aggregate the codes for a condition in order to define cases. This paper describes a methodology to develop ‘indicator markers’ found in patients with early rheumatoid arthritis (RA); these are a broader range of codes which may allow a probabilistic case definition to use in cases where no diagnostic code is yet recorded. Methods We examined EHRs of 5,843 patients in the General Practice Research Database, aged ≥30y, with a first coded diagnosis of RA between 2005 and 2008. Lists of indicator markers for RA were developed initially by panels of clinicians drawing up code-lists and then modified based on scrutiny of available data. The prevalence of indicator markers, and their temporal relationship to RA codes, was examined in patients from 3y before to 14d after recorded RA diagnosis. Findings Indicator markers were common throughout EHRs of RA patients, with 83.5% having 2 or more markers. 34% of patients received a disease-specific prescription before RA was coded; 42% had a referral to rheumatology, and 63% had a test for rheumatoid factor. 65% had at least one joint symptom or sign recorded and in 44% this was at least 6-months before recorded RA diagnosis. Conclusion Indicator markers of RA may be valuable for case definition in cases which do not yet have a diagnostic code. The clinical diagnosis of RA is likely to occur some months before it is coded, shown by markers frequently occurring ≥6 months before recorded diagnosis. It is difficult to differentiate delay in diagnosis from delay in recording. Information concealed in free text may be required for the accurate identification of patients and to assess the quality of care in general practice

Designing programs for eliminating canine rabies from islands: Bali, Indonesia as a case study

<p>Background: Canine rabies is one of the most important and feared zoonotic diseases in the world. In some regions rabies elimination is being successfully coordinated, whereas in others rabies is endemic and continues to spread to uninfected areas. As epidemics emerge, both accepted and contentious control methods are used, as questions remain over the most effective strategy to eliminate rabies. The Indonesian island of Bali was rabies-free until 2008 when an epidemic in domestic dogs began, resulting in the deaths of over 100 people. Here we analyze data from the epidemic and compare the effectiveness of control methods at eliminating rabies.</p> <p>Methodology/Principal Findings: Using data from Bali, we estimated the basic reproductive number, R0, of rabies in dogs, to be ~1·2, almost identical to that obtained in ten–fold less dense dog populations and suggesting rabies will not be effectively controlled by reducing dog density. We then developed a model to compare options for mass dog vaccination. Comprehensive high coverage was the single most important factor for achieving elimination, with omission of even small areas (<0.5% of the dog population) jeopardizing success. Parameterizing the model with data from the 2010 and 2011 vaccination campaigns, we show that a comprehensive high coverage campaign in 2012 would likely result in elimination, saving ~550 human lives and ~$15 million in prophylaxis costs over the next ten years.</p> <p>Conclusions/Significance: The elimination of rabies from Bali will not be achieved through achievable reductions in dog density. To ensure elimination, concerted high coverage, repeated, mass dog vaccination campaigns are necessary and the cooperation of all regions of the island is critical. Momentum is building towards development of a strategy for the global elimination of canine rabies, and this study offers valuable new insights about the dynamics and control of this disease, with immediate practical relevance.</p&gt

Evaluation of Nafamostat as Chemoprophylaxis for SARS-CoV-2 Infection in Hamsters

The successful development of a chemoprophylaxis against SARS-CoV-2 could provide a tool for infection prevention that is implementable alongside vaccination programmes. Nafamostat is a serine protease inhibitor that inhibits SARS-CoV-2 entry in vitro, but it has not been characterised for chemoprophylaxis in animal models. Clinically, nafamostat is limited to intravenous delivery and has an extremely short plasma half-life. This study sought to determine whether intranasal dosing of nafamostat at 5 mg/kg twice daily was able to prevent the airborne transmission of SARS-CoV-2 from infected to uninfected Syrian Golden hamsters. SARS-CoV-2 RNA was detectable in the throat swabs of the water-treated control group 4 days after cohabitation with a SARS-CoV-2 inoculated hamster. However, throat swabs from the intranasal nafamostat-treated hamsters remained SARS-CoV-2 RNA negative for the full 4 days of cohabitation. Significantly lower SARS-CoV-2 RNA concentrations were seen in the nasal turbinates of the nafamostat-treated group compared to the control (p = 0.001). A plaque assay quantified a significantly lower concentration of infectious SARS-CoV-2 in the lungs of the nafamostat-treated group compared to the control (p = 0.035). When taken collectively with the pathological changes observed in the lungs and nasal mucosa, these data are strongly supportive of the utility of intranasally delivered nafamostat for the prevention of SARS-CoV-2 infection

Age estimation [editorial].

yesAssessing and interpreting dental and skeletal age-related changes in both the living and the dead is of interest to a wide range of disciplines (e.g. see Bittles and Collins 1986) including human biology, paediatrics, public health, palaeodemography, archaeology, palaeontology, human evolution, forensic anthropology and legal medicine. ... This special issue of Annals of Human Biology arises from the 55th annual symposium of the Society for the Study of Human Biology in association with the British Association for Biological Anthropological and Osteoarchaeology held in Oxford, UK, from 9–11 December 2014. Only a selection of the presentations are included here which encompass some of the major recent advances in age estimation from the dentition and skeleton