Exploration of the lived experience of African journalists during the 2014 Ebola crisis

In the case of the 2014 Ebola outbreak in Western Africa which claimed over 11,000 lives, the virus propagated faster than reliable data. Local journalists faced an unprecedented epidemic and a shortage of credible information. This report explores the experiences of journalists during the 2014 Ebola outbreak. Some major findings of the research: credibility, not accessibility was the key criterion when it came to selecting reliable sources; difficulty contacting experts was the most highly ranked issue; local Ministries of Health and Ebola Response Centre were reported as the most difficult sources to access, followed by local authorities and government officials

CJCheck Stage 1: development and testing of a checklist for reporting community juries – Delphi process and analysis of studies published in 1996–2015

Background: Opportunities for community members to actively participate in policy development is increasing. Community/Citizen’s Juries (CJs) are a deliberative democratic process aimed to illicit informed community perspectives on difficult topics. But how comprehensive these processes are reported in peer-reviewed literature is unknown. Adequate reporting of methodology enables others to judge process quality, compare outcomes, facilitate critical reflection, and potentially repeat a process. We aimed to identify important elements for reporting CJs and develop an initial checklist, and to review published health and health policy CJs to examine reporting standards. Design: Using literature and expertise from CJ researchers and policy-advisors, a list of important CJ reporting items was suggested and further refined. We then reviewed published CJs within the health literature and used the checklist to assess the comprehensiveness of reporting. Results: CJCheck was developed and examined reporting of CJ planning, juror information, procedures and scheduling. We screened 1711 studies and extracted data from 38. No studies fully reported the checklist items. The item most consistently reported was juror numbers (92%, 35/38) while least reported was availability of expert presentations (5%, 2/38). Recruitment strategies were described in 66% of studies (25/38) however, the frequency and timing of deliberations was inadequately described (29%, 11/38). Conclusions: Currently CJ publications in health and health policy literature are inadequately reported, hampering their use in policy-making. We propose broadening the CJCheck by creating a reporting standards template in collaboration with international CJ researchers, policy-advisors and consumer representatives to ensure standardised, systematic and transparent reporting

Alternatives to project-specific consent for access to personal information for health research: Insights from a public dialogue

<p>Abstract</p> <p>Background</p> <p>The role of consent for research use of health information is contentious. Most discussion has focused on when project-specific consent may be waived but, recently, a broader range of consent options has been entertained, including broad opt-in for multiple studies with restrictions and notification with opt-out. We sought to elicit public values in this matter and to work toward an agreement about a common approach to consent for use of personal information for health research through deliberative public dialogues.</p> <p>Methods</p> <p>We conducted seven day-long public dialogues, involving 98 participants across Canada. Immediately before and after each dialogue, participants completed a fixed-response questionnaire rating individuals' support for 3 approaches to consent in the abstract and their consent choices for 5 health research scenarios using personal information. They also rated how confident different safeguards made them feel that their information was being used responsibly.</p> <p>Results</p> <p>Broad opt-in consent for use of personal information garnered the greatest support in the abstract. When presented with specific research scenarios, no one approach to consent predominated. When profit was introduced into the scenarios, consent choices shifted toward greater control over use. Despite lively and constructive dialogues, and considerable shifting in opinion at the individual level, at the end of the day, there was no substantive aggregate movement in opinion. Personal controls were among the most commonly cited approaches to improving people's confidence in the responsible use of their information for research.</p> <p>Conclusion</p> <p>Because no one approach to consent satisfied even a simple majority of dialogue participants and the importance placed on personal controls, a mechanism should be developed for documenting consent choice for different types of research, including ways for individuals to check who has accessed their medical record for purposes other than clinical care. This could be done, for example, through a web-based patient portal to their electronic health record. Researchers and policy makers should continue to engage the public to promote greater public understanding of the research process and to look for feasible alternatives to existing approaches to project-specific consent for observational research.</p

Priority setting of ICU resources in an influenza pandemic: a qualitative study of the Canadian public's perspectives

<p>Abstract</p> <p>Background</p> <p>Pandemic influenza may exacerbate existing scarcity of life-saving medical resources. As a result, decision-makers may be faced with making tough choices about who will receive care and who will have to wait or go without. Although previous studies have explored ethical issues in priority setting from the perspective of clinicians and policymakers, there has been little investigation into how the public views priority setting during a pandemic influenza, in particular related to intensive care resources.</p> <p>Methods</p> <p>To bridge this gap, we conducted three public town hall meetings across Canada to explore Canadian's perspectives on this ethical challenge. Town hall discussions group discussions were digitally recorded, transcribed, and analyzed using thematic analysis.</p> <p>Results</p> <p>Six interrelated themes emerged from the town hall discussions related to: ethical and empirical starting points for deliberation; criteria for setting priorities; pre-crisis planning; in-crisis decision-making; the need for public deliberation and input; and participants' deliberative struggle with the ethical issues.</p> <p>Conclusions</p> <p>Our findings underscore the importance of public consultation in pandemic planning for sustaining public trust in a public health emergency. Participants appreciated the empirical and ethical uncertainty of decision-making in an influenza pandemic and demonstrated nuanced ethical reasoning about priority setting of intensive care resources in an influenza pandemic. Policymakers may benefit from a better understanding the public's empirical and ethical 'starting points' in developing effective pandemic plans.</p

Qualitative thematic analysis of consent forms used in cancer genome sequencing

<p>Abstract</p> <p>Background</p> <p>Large-scale whole genome sequencing (WGS) studies promise to revolutionize cancer research by identifying targets for therapy and by discovering molecular biomarkers to aid early diagnosis, to better determine prognosis and to improve treatment response prediction. Such projects raise a number of ethical, legal, and social (ELS) issues that should be considered. In this study, we set out to discover how these issues are being handled across different jurisdictions.</p> <p>Methods</p> <p>We examined informed consent (IC) forms from 30 cancer genome sequencing studies to assess (1) stated purpose of sample collection, (2) scope of consent requested, (3) data sharing protocols (4) privacy protection measures, (5) described risks of participation, (6) subject re-contacting, and (7) protocol for withdrawal.</p> <p>Results</p> <p>There is a high degree of similarity in how cancer researchers engaged in WGS are protecting participant privacy. We observed a strong trend towards both using samples for additional, unspecified research and sharing data with other investigators. IC forms were varied in terms of how they discussed re-contacting participants, returning results and facilitating participant withdrawal. Contrary to expectation, there were no consistent trends that emerged over the eight year period from which forms were collected.</p> <p>Conclusion</p> <p>Examining IC forms from WGS studies elucidates how investigators are handling ELS challenges posed by this research. This information is important for ensuring that while the public benefits of research are maximized, the rights of participants are also being appropriately respected.</p

Including the public in pandemic planning: a deliberative approach

Background: Against a background of pandemic threat posed by SARS and avian H5N1 influenza, this study used deliberative forums to elucidate informed community perspectives on aspects of pandemic planning. Methods: Two deliberative forums were carried out with members of the South Australian community. The forums were supported by a qualitative study with adults and youths, systematic reviews of the literature and the involvement of an extended group of academic experts and policy makers. The forum discussions were recorded with simultaneous transcription and analysed thematically. Results: Participants allocated scarce resources of antiviral drugs and pandemic vaccine based on a desire to preserve society function in a time of crisis. Participants were divided on the acceptability of social distancing and quarantine measures. However, should such measures be adopted, they thought that reasonable financial, household and psychological support was essential. In addition, provided such support was present, the participants, in general, were willing to impose strict sanctions on those who violated quarantine and social distancing measures. Conclusions: The recommendations from the forums suggest that the implementation of pandemic plans in a severe pandemic will be challenging, but not impossible. Implementation may be more successful if the public is engaged in pandemic planning before a pandemic, effective communication of key points is practiced before and during a pandemic and if judicious use is made of supportive measures to assist those in quarantine or affected by social isolation measures.Annette J Braunack-Mayer, Jackie M Street, Wendy A Rogers, Rodney Givney, John R Moss, Janet E Hiller, Flu Views tea

Competing and conflicting messages via online news media: potential impacts of claims that the Great Barrier Reef is dying

Coverage of issues by news media is known to impact on both public perceptions and policy development aimed at addressing the featured issues. We examine the potential impact of news media coverage regarding the health and potential future of the World heritage-listed Great Barrier Reef, which is under multiple pressures, both natural and anthropogenic. We draw on the extant literature regarding the impact of news media coverage of other complex issues, linking to relevant, albeit limited theoretical concepts that have been applied to previous media studies. We find that media coverage is predominately sensationalized and negative, with the potential to reinforce perceptions that mitigation attempts will be ineffective and thus likely to inhibit future policy development. We discuss the need for a review of existing science communication models and strategies to reduce the knowledge-practice gap between scientists and policy makers, together with proactive strategies to counter negative news coverage