Ocular gene transfer in the spotlight: implications of newspaper content for clinical communications

BACKGROUND: Ocular gene transfer clinical trials are raising hopes for blindness treatments and attracting media attention. News media provide an accessible health information source for patients and the public, but are often criticized for overemphasizing benefits and underplaying risks of novel biomedical interventions. Overly optimistic portrayals of unproven interventions may influence public and patient expectations; the latter may cause patients to downplay risks and over-emphasize benefits, with implications for informed consent for clinical trials. We analyze the news media communications landscape about ocular gene transfer and make recommendations for improving communications between clinicians and potential trial participants in light of media coverage. METHODS: We analyzed leading newspaper articles about ocular gene transfer (1990-2012) from United States (n = 55), Canada (n = 26), and United Kingdom (n = 77) from Factiva and Canadian Newsstand databases using pre-defined coding categories. We evaluated the content of newspaper articles about ocular gene transfer for hereditary retinopathies, exploring representations of framing techniques, research design, risks/benefits, and translational timelines. RESULTS: The dominant frame in 61% of stories was a celebration of progress, followed by human-interest in 30% of stories. Missing from the positive frames were explanations of research design; articles conflated clinical research with treatment. Conflicts-of-interest and funding sources were similarly omitted. Attention was directed to the benefits of gene transfer, while risks were only reported in 43% of articles. A range of visual outcomes was described from slowing vision loss to cure, but the latter was the most frequently represented even though it is clinically infeasible. Despite the prominence of visual benefit portrayals, 87% of the articles failed to provide timelines for the commencement of clinical trials or for clinical implementation. CONCLUSIONS: Our analysis confirms that despite many initiatives to improve media communications about experimental biotechnologies, media coverage remains overly optimistic and omits important information. In light of these findings, our recommendations focus on the need for clinicians account for media coverage in their communications with patients, especially in the context of clinical trial enrolment. The development of evidence-based communication strategies will facilitate informed consent and promote the ethical translation of this biotechnology

The Emperor's New Clothes: Media Representations Of Complementary and Alternative Medicine: 1990-2005

The purpose of this dissertation is to reflect on the author’s published work in the field complementary and alternative medicine, specifically that produced between 1996 and 2005. It examines how the production of this work was influenced by the author’s previous and concurrent experience as a medical journalist and the methodological challenges arising from sourcing complementary and alternative medicine and framing for audiences of broadsheet newspapers and two books – The Which? Guide to Complementary Medicine and Alternative Answers to Asthma & Allergies. It explores how this work relates to scholarship in three key areas: the theory of sourcing, the theory of framing and the study of erroneous beliefs. The author demonstrates that a “perfect storm” – sociologically, culturally and economically – created a narrative that suited the new consumer-­‐driven cult of the empowered individual, which in turn led to most sectors of the print media becoming impervious to any real investigation of the subject

Credibility and Trust Issues Stemming from an Ambiguous Science Frame: Reducing Demand for Rhino Horn in Vietnam with the Fingernail Metaphor

This paper investigates trust and credibility issues raised by Environmental Non-Government Organisations (ENGOs) in Vietnam working to reduce demand for rhino horn. The ENGOs selected scientific information of rhino horn’s keratin composition, which is similar to fingernails, but excluded from their media outputs Asian scientific studies results supporting the horn’s medicinal value. This paper argues that the keratin/fingernail messaging created trust and credibility issues because it competed with an existing science frame in Asia, which defers to the science of traditional medicine, and excluded discussion of an institutionalized division in scientific opinion concerning rhino horn’s worth as a medicine

Health research as news in South Africa: measuring the quality of health journalism at six daily newspapers

Thesis (MPhil)--Stellenbosch University, 2016ENGLISH ABSTRACT: Quantitative analysis of reporting on new medical research by six South African newspapers The media are extremely influential in shaping public opinion about various issues. News reports on new medical research have the potential to impact on people’s health – not only by influencing individual behaviour, but also by informing health professionals and policy-makers about new medical findings. This study measured the standard of news reports on new medical research that were published in six daily newspapers in South Africa during 2014. Using a rating model developed by Health Media Review and based on ten criteria that characterise a good health news report, every relevant article published in that period was analysed and rated. The ratings of individual articles were combined to determine an average rating for each newspaper. Averages for each criterion highlighted the strengths and weaknesses of each newspaper’s reporting on new medical research. Additional information about the number, placement and origin of articles was also collected and provided insight into the value newspapers attach to reports on new medical research. The findings indicated that although the average scores varied widely between individual newspapers, definitive trends in high and low scoring criteria applied to all the publications. In other words, newspapers displayed similar strengths and weaknesses for certain criteria and there were definitive areas in which all newspapers either scored very well or fared poorly. In general the assessed newspapers fared well regarding some very important basic principles of science reporting, such as grasping the quality of evidence and avoiding disease mongering, but much more can be done to improve the standard of reporting on new medical research. The research indicated that journalists should engage more critically with new research by highlighting the benefits as well as the risks of a new medication or technology, adding comment from independent sources and ensuring that they only report on peer-reviewed research. Journalists should also do more to inform readers about the accessibility and true value of new research by discussing availability and costs and benchmarking it against other therapies.AFRIKAANS OPSOMMING: ʼn Kwantitatiewe ontleding van verslaggewing oor nuwe mediese navorsing deur ses Suid-Afrikaanse koerante Die media is ontsaglik invloedryk wat openbare meningsvorming oor verskeie kwessies betref. Verslaggewing oor nuwe mediese navorsing kan ʼn impak op mense se gesondheid hê – nie net deur individuele gedrag te beïnvloed nie, maar ook deur nuwe mediese bevindings aan gesondheidsdeskundiges en beleidmakers bekend te stel. Hierdie studie meet die standaard van beriggewing oor nuwe mediese navorsing wat gedurende 2014 in ses Suid-Afrikaanse dagblaaie gepubliseer is. Deur middel van ʼn takseringsmodel wat deur Health Media Review ontwikkel is en gegrond is op 10 kriteria wat ʼn goeie gesondheidsartikel kenmerk, is elke artikel wat gedurende daardie tydperk gepubliseer is, ontleed en beoordeel. Die waarde van individuele artikels is saamgevoeg om ʼn gemiddelde waarde vir elke koerant te bepaal. Die gemiddeld van elke kriterium het die sterk- en swakpunte van beriggewing oor nuwe mediese navorsing by elke koerant blootgelê. Bykomende inligting oor die getal, plasing en oorsprong van die artikels is ook ingesamel en het insae gebied in die waarde wat elke koerant aan beriggewing oor nuwe mediese navorsing heg. Die bevindings het getoon dat ofskoon daar groot verskille tussen die gemiddelde waardes van die individuele koerante was, besliste tendense van hoë en lae tellings vir sekere kriteria op al die publikasies van toepassing was. Met ander woorde, die koerante het soortgelyke sterk- en swakpunte getoon wat sekere kriteria betref en daar was besliste areas waar alle koerante óf baie goed, óf swak gevaar het. Die koerante wat ontleed is, het oor die algemeen goed gevaar betreffende ʼn paar baie belangrike basiese beginsels van wetenskapsverslaggewing, soos om die gehalte van die bewyse te begryp en siekte-oordrywing te vermy, maar daar kan nog baie gedoen word om die standaard van beriggewing oor nuwe mediese navorsing te verbeter. Die navorsing het getoon dat joernaliste navorsing meer krities moet beoordeel deur die voordele én die risiko’s van ʼn nuwe medikasie of tegnologie uit te lig, kommentaar van onafhanklike bronne te bekom en slegs verslag te doen oor navorsing wat eweknie-beoordeling ondergaan het. Joernaliste moet ook meer doen om lesers in te lig oor die toeganklikheid en waarde van nuwe navorsing deur die beskikbaarheid en koste daarvan te noem en dit teen ander terapiee te meet

Practitioner based inquiry: taking the case of homeopathy.

After twenty years of practising and teaching homeopathy, I am concerned that research into treatment by professional homeopaths has become stifled by evidence based medicine discourse. Homeopathy’s distinguishing features are obscured by erroneous assumptions that a homeopathic prescription is subject to the same biochemical pathways as pharmacological medication. Homeopaths are urged by external parties to ‘prove homeopathy works’ on biomedical terms. This reflexive inquiry is an attempt to redress the balance. From postmodern and pragmatic perspectives I reflexively engage with professional experiences (Smith, 2009) as a means of articulating practitioner based knowledge (Freshwater and Rolfe, 2001, Rolfe et al., 2001). The subjectivity of the practitioner researcher is transformed from a research problem into an opportunity to critically examine practitioner experience (Lees and Freshwater, 2008). The research process is a focus for the inquiry itself, with the intention of creating an open text that invites participation from the reader (Denzin and Lincoln, 1994). I ‘take the case’ of my own practice and its wider context, and enact a synergy of homeopathic practice and research methodologies. The thesis is organised around the eight principles of homeopathy. Case vignettes and homeopathy’s visual iconography (Cherry, 2008) are used to integrate clinical experience into the thesis. Multiple analytical strategies evolved, including discourse analysis, action research, narrative analysis and writing as inquiry. These are not applied to pre-existing professional experiential data (Lees, 2005), but engaging with these strategies has shaped data creation and the inquiry itself. Use of multiple methods is not an attempt to triangulate, rather the dissonance between them is essential to achieving competing and multiple perspectives on professional experience. There is no intention to present a discrete set of findings. The inquiry is framed through the inquiry process, creating an innovative approach to practitioner based inquiry as a collage of reflexive, experiential interpretations and interactions with professional practice. I redefine evidence as being the inquiry process itself and the practitioner as integral to knowledge creation and application in practice. The open dialogic text invites practitioners to adapt this model of practitioner based research in their own practices. The self-critical iterative dialogue gives voice to the practitioner researcher in discourses that are congruent with homeopathic practice. I make original contributions to knowledge by examining homeopathic practice from different theoretical and experiential perspectives, including observations on the connections between homeopathy’s enduring popularity and how the patients’ own belief systems about health and illness are still influenced by the old humoural system of medicine

Traditional Knowledge Rights and Wrongs

Article published in the Va. J.Law & Tech.

Looking for alternatives risk, reflexivity and complementary Therapies

This thesis explores individuals' motivations for using complementary and alternative medicines (CAM). More specifically, the thesis explores the relationship between the use of CAM and wider social and cultural changes which have altered individuals’ expectations about their health and their understanding of risk and embodiment. The thesis draws on data from 24 in-depth interviews with individuals using a range of complementary and alternative health practices. Building on previous literature in this field this thesis not only explores individuals' initial motivations for using CAM, but also the reasons why they remain engaged with such practices and how their motives change over the course of time. I argue that the use of complementary and alternative medicines should be understood in terms of a career. As individuals progress along the CAM career trajectory their motives for using any given therapy not only change, but they also acquire further justifications and rationalizations for using CAM. One of the main motivations for using complementary therapies, amongst the participants of this study, was because of concerns over the safety of Western medicines, which were associated with potential risks to the health of the body. In contrast, so-called 'natural' remedies or other types of complementary therapies were seen to represent a relatively 'risk-free’ alternative. In this sense I argue that complementary therapies are adopted as part of a strategy of risk avoidance and as a means of coping with the anxieties associated with caring for health and body within late modem society. The thesis also explores individuals' use of complementary and alternative medicines for self-care purposes. I argue that such practices should be viewed as a form of resistance to medical control and an attempt to regain control over the self. The thesis not only adds to our current understanding of complementary therapies within contemporary society, but also makes a significant contribution to key sociological debates

The Constitutionality of Restrictions on Recreational Cannabis Advertising: Balancing Public Health and Freedom of Expression

On April 20, 2016, Health Minister Jane Philpott announced that legislation legalizing recreational marijuana would be introduced in Spring 2017, with the goal of keeping marijuana out of the hands of children and profit out of the hands of criminals. Bill C-45, An Act Respecting Cannabis passed the second reading in the House of Commons, and contains restrictions on advertising cannabis, with a few exceptions. Advertising is recognized as a protected form of expression under the Charter of Rights and Freedoms, so if the government infringes on this right, they must be able to prove that it is justified in a free and democratic society, pursuant to section 1 of the Charter. The Supreme Court of Canada has twice assessed restrictions on tobacco advertising, providing a framework for assessing whether advertising restrictions pass constitutional muster. Using this framework, this thesis analyzes whether the proposed restrictions on advertising marijuana are constitutional