"Guide" vs "Gatekeeper": Information Rights Legislation and The Provincial Archives of Manitoba

Access and privacy legislation (also known as information rights legislation) has been an evolving feature of Canadian life for more than twenty years. Public archives, as custodians of the records of their government sponsors, are profoundly influenced by these statutes. There are two factors that combine to make Manitoba unique in the Canadian access and privacy landscape. The Provincial Archives of Manitoba does not assume the role of “gatekeeper” of access to records in archival custody. Instead, it serves as “guide” to them and to all other records covered by the legislation, in its role as the central administrative office for the Freedom of Information and Protection of Privacy Act. This approach has resulted in both benefits and challenges for the Provincial Archives. By the same token, the more common role of a provincial archival institution – actually determining access to records in its custody and control – has, according to the literature, been challenging and problematic. This thesis is a case study of the “Manitoba model”. It explores the history of public recordkeeping and the creation of a reliable government records program at the Provincial Archives of Manitoba, which provided the foundation of access to information. It also discusses how information rights legislation developed in Manitoba, the role of the Provincial Archives in this development, and the impact on it of the responsibilities which have resulted from this role. The thesis examines some of the issues arising out of Canadian access and privacy legislation which have particular implications for archival institutions and concludes with suggestions for changes which address the question of the role of a public archives in relation to information rights legislation.Master of Arts in Archival Studie

Choice in episiotomy – fact or fantasy: a qualitative study of women’s experiences of the consent process

BACKGROUND: Consent to episiotomy is subject to the same legal and professional requirements as consent to other interventions, yet is often neglected. This study explores how women experience and perceive the consent process. METHODS: Qualitative research in a large urban teaching hospital in London. Fifteen women who had recently undergone episiotomy were interviewed using a semi-structured interview guide and data was analysed using thematic analysis. RESULTS: Three themes captured women’s experiences of the episiotomy consent process: 1) Missing information – “We knew what it was, so they didn’t give us details,” 2) Lived experience of contemporaneous, competing events – “There’s no time to think about it,” and 3) Compromised volitional consent – “You have no other option.” Minimal information on episiotomy was shared with participants, particularly concerning risks and alternatives. Practical realities such as time pressure, women’s physical exhaustion and their focus on the baby’s safe delivery, constrained consent discussions. Participants consequently inferred that there was no choice but episiotomy; whilst some women were still happy to agree, others perceived the choice to be illusory and disempowering, and subsequently experienced episiotomy as a distressing event. CONCLUSIONS: Consent to episiotomy is not consistently informed and voluntary and more often takes the form of compliance. Information must be provided to women in a more timely fashion in order to fulfil legal requirements, and to facilitate a sense of genuine choice

Patient-centred consent in women's health: does it really work in antenatal and intra-partum care?

BACKGROUND: Legal and social changes mean that information sharing and consent in antenatal and intrapartum settings is contentious, poorly understood and uncertain for healthcare professionals. This study aimed to investigate healthcare professionals' views and experiences of the consent process in antenatal and intrapartum care. METHODS: Qualitative research performed in a large urban teaching hospital in London. Fifteen healthcare professionals (obstetricians and midwives) participated in semi-structured in-depth interviews. Data were collectively analysed to identify themes in the experiences of the consent process. RESULTS: Three themes were identified: (1) Shared decision-making and shared responsibility -engaging women in dialogue is often difficult and, even when achieved, women are not always able or do not wish to share responsibility for decisions (2) Second-guessing women - assessing what is important to a woman is inherently difficult so healthcare professionals sometimes feel forced to anticipate a woman's views (3) Challenging professional contexts - healthcare professionals are disquieted by consent practice in the Labour ward setting which is often at odds with legal and professional guidance. CONCLUSIONS: Results suggest that there is a mismatch between what is required of healthcare professionals to effect an antenatal or intrapartum consent process concordant with current legal and professional guidance and what can be achieved in practice. If consent, as currently articulated, is to remain the barometer for current practice, healthcare professionals need more support in ways of enabling women to make decisions which healthcare professionals feel confident are autonomous whatever the circumstances of the consultation

Data Safe Havens and Trust: Toward a Common Understanding of Trusted Research Platforms for Governing Secure and Ethical Health Research

In parallel with the advances in big data-driven clinical research, the data safe haven concept has evolved over the last decade. It has led to the development of a framework to support the secure handling of health care information used for clinical research that balances compliance with legal and regulatory controls and ethical requirements while engaging with the public as a partner in its governance. We describe the evolution of 4 separately developed clinical research platforms into services throughout the United Kingdom-wide Farr Institute and their common deployment features in practice. The Farr Institute is a case study from which we propose a common definition of data safe havens as trusted platforms for clinical academic research. We use this common definition to discuss the challenges and dilemmas faced by the clinical academic research community, to help promote a consistent understanding of them and how they might best be handled in practice. We conclude by questioning whether the common definition represents a safe and trustworthy model for conducting clinical research that can stand the test of time and ongoing technical advances while paying heed to evolving public and professional concerns

Listen to Nice

In describing Humphrey Jennings’ wartime documentary propaganda film, 'Listen to Britain' (1942), a film with an overtly poetic sensibility and dominantly musical soundtrack, John Corner asserts that ‘through listening to Britain, we are enabled to properly look at it'. This idea of sound leading our attention to the images has underpinned much of the collaborative work between composer and sound designer, Geoffrey Cox, and documentary filmmaker, Keith Marley. It is in this context that the article will analyse an extract of A Film About Nice (Marley and Cox 2010), a contemporary re-imagining of Jean Vigo’s silent documentary, 'A propos de Nice' (1930). Reference will be made throughout to the historical context, and the filmic and theoretical influences that have informed the way music and creative sound design have been used to place emphasis on hearing a place, as much as seeing it

Outcomes of 50 patients entering an adolescent bariatric surgery programme.

OBJECTIVE: Bariatric surgery is the most effective intervention for weight loss and obesity-related comorbidities currently available. Little is known about adolescents entering National Health Service (NHS) bariatric programmes. We aimed to characterise those entering a pathway and report their outcomes. DESIGN: Prospective service evaluation of patients assessed within a single NHS adolescent bariatric service. RESULTS: 50 patients assessed between 26 July 2007 and 27 January 2014; 6 (12%) were not eligible for surgery, 7 (14%) actively opted out, 8 (16%) were lost to follow-up and 29 (58%) underwent surgery (18 sleeve gastrectomy (SG) 11 Roux-en-y gastric bypass (RYGB) and 0 adjustable gastric band). Mean (SD) age at initial assessment was 16.0 (1.3) years and 18.3 (1.3) at surgery (youngest 15.7 years). Mean time taken to surgery was 1.8 years; longer in those with higher body mass index (BMI) and aged below 14 at first assessment. Mean (SD) BMI at surgery was 53.1 (8.3) kg/m2, lower in those undergoing RYGB (-5.2, 95% CI -11.6 to 1.13). Follow-up was inconsistent and challenging; 1/29 (3.5%) was transferred to a regional centre, 10/29 (34.5%) attended ongoing follow-up within our protocol, 6/29 (20.7%) had intermittent monitoring and 12/29 (41.4%) were lost to follow-up. Mean BMI change at 1 year (-14.0 kg/m2) and complications were similar to published cohorts. Data from 11 lost to follow-up were obtained and outcomes appeared similar to those who actively followed up. CONCLUSION: Adolescent bariatric surgery in the NHS appears effective, with outcomes similar to those reported internationally. Further work is needed to optimise postsurgical surveillance and reduce age at surgery

Genotipificación de los genes msp1 (bloque 2) y dhfr (codón108) de Plasmodium falciparum en muestras de campo recolectadas en cuatro localidades endémicas de Colombia.

Introduction. Plasmodium falciparum is a highly polymorphic parasite, which allows it to evade the host's immune response, spread drug resistance and favours transmission.Objectives. To analyse the genetic diversity of P. falciparum populations in samples from four endemic localities in Colombia.Materials And Methods. 123 blood samples were collected on filter paper from patients with non-complicated P. falciparum malaria during 2002 to 2004. The samples were genotyped using polymerase chain reaction with specific primers for the polymorphic region of block 2 of the msp1 gene and the 108 codon of the dhfr gene.Results. In msp1 block 2, 95.9% (118/123; 95% CI: 90.8-98.7) of the samples harboured MAD20; 6.5% K1 (8/123; 95% CI: 2.8-12.4) and 2.4% RO33 (3/123; 95% CI: 0.5-6.9). For the dhfrgene the mutant allele N 108 was found in all the samples amplified, T 108 in 3.2% and the wild type S108 in 34.1%. Taking together all the results from both genes, 61.8% (76/123; 95% CI: 52.6-70.4) of the samples were simple infections and 38.2% (47/123; 95% CI: 29.6-47.4) were mixed infections. MAD20/N108-S108 (30.1%) was the most frequent combination among the latter.Conclusions. Simple infections, i.e, a single allelic type in each one of the genes studied, prevailed among the circulating parasite populations. In this study the genetic composition of P. falciparum parasite populations was very homogeneous.Introducción. Plasmodium falciparum es un parásito altamente polimórfico, lo cual le permite evadir la respuesta inmune del hospedero, diseminar la resistencia a medicamentos y favorecer la transmisión. Objetivos. Analizar la diversidad genética de las poblaciones de P. falciparum en muestras de cuatro zonas endémicas de malaria en Colombia. Materiales y métodos. Se incluyeron muestras de sangre recolectadas en papel de filtro de 123 pacientes con malaria no complicada por P. falciparum durante los años 2002 a 2004; la genotipificación se realizó mediante reacción en cadena de la polimerasa con iniciadores específicos para los marcadores moleculares de la región polimórfica del bloque 2 del gen msp1 y del codón 108 de dhfr. Resultados. En el bloque 2 del gen msp1 se detectó MAD20 en 95,9% (118/123; IC 95%: 90,8 a 98,7), K1 en 6,5% (8/123; IC 95%: 2,8 a 12,4) y RO33 en 2,4% (3/123; IC 95%: 0,5 a 6,9) de las muestras. Para el gen dhfr, el alotipo mutante N108 se detectó en todas las muestras analizadas y el alotipo T108 en 3,2% (4/123; IC 95%: 0,9 a 8,1); el alotipo silvestre S108 se encontró en 34,1% (42/123; IC 95%: 25,8 a 43,2). Al combinar los resultados de ambos genes, el 61,8% (76/123; IC 95%: 52,6 a 70,4) de las muestras correspondieron a infecciones simples y el 38,2% (47/123; IC 95%: 29,6 a 47,4) a infecciones mixtas, siendo MAD20/N108-S108 la combinación más frecuente entre estas últimas (30,1%). Conclusiones. Las infecciones simples, o sea, la presencia de un solo alelo en cada uno de los genes, predominaron en las muestras estudiadas; las poblaciones de parásitos analizadas fueron muy homogéneas en su composición genética

Novel Pandemic Influenza A(H1N1) Viruses Are Potently Inhibited by DAS181, a Sialidase Fusion Protein

Background: The recent emergence of a novel pandemic influenza A(H1N1) strain in humans exemplifies the rapid and unpredictable nature of influenza virus evolution and the need for effective therapeutics and vaccines to control such outbreaks. However, resistance to antivirals can be a formidable problem as evidenced by the currently widespread oseltamivir- and adamantane-resistant seasonal influenza A viruses (IFV). Additional antiviral approaches with novel mechanisms of action are needed to combat novel and resistant influenza strains. DAS181 (Fludase)™) is a sialidase fusion protein in early clinical development with in vitro and in vivo preclinical activity against a variety of seasonal influenza strains and highly pathogenic avian influenza strains (A/H5N1). Here, we use in vitro, ex vivo, and in vivo models to evaluate the activity of DAS181 against several pandemic influenza A(H1N1) viruses. Methods and Findings: The activity of DAS181 against several pandemic influenza A(H1N1) virus isolates was examined in MDCK cells, differentiated primary human respiratory tract culture, ex-vivo human bronchi tissue and mice. DAS181 efficiently inhibited viral replication in each of these models and against all tested pandemic influenza A(H1N1) strains. DAS181 treatment also protected mice from pandemic influenza A(H1N1)-induced pathogenesis. Furthermore, DAS181 antiviral activity against pandemic influenza A(H1N1) strains was comparable to that observed against seasonal influenza virus including the H274Y oseltamivir-resistant influenza virus. Conclusions: The sialidase fusion protein DAS181 exhibits potent inhibitory activity against pandemic influenza A(H1N1) viruses. As inhibition was also observed with oseltamivir-resistant IFV (H274Y), DAS181 may be active against the antigenically novel pandemic influenza A(H1N1) virus should it acquire the H274Y mutation. Based on these and previous results demonstrating DAS181 broad-spectrum anti-IFV activity, DAS181 represents a potential therapeutic agent for prevention and treatment of infections by both emerging and seasonal strains of IFV.published_or_final_versio