Peering over the shoulders of giants?

‘Open’ is a highly-visible cultural trend of the early twenty-first century. A brief scan of anewspaper or quick Internet search reveals it as a prefix to learning, source, standard, data,knowledge, democracy, access, repository, innovation, government, science and probablymore. The expectations of the broadband generation – young people born around the turn ofthe century – for openness and instant, on‑demand access to information affect research asmuch as any other social activity. As the world’s population of digital residents – those whosee the Web as the place where they express opinions, form relationships, develop an identityand belong to a community – grows, the expectation that the Web will be the place whereinformation is created and communicated will grow alongside them

Public Participation in Scientific Research: a Framework for Deliberate Design

Members of the public participate in scientific research in many different contexts, stemming from traditions as varied as participatory action research and citizen science. Particularly in conservation and natural resource management contexts, where research often addresses complex social–ecological questions, the emphasis on and nature of this participation can significantly affect both the way that projects are designed and the outcomes that projects achieve. We review and integrate recent work in these and other fields, which has converged such that we propose the term public participation in scientific research (PPSR) to discuss initiatives from diverse fields and traditions. We describe three predominant models of PPSR and call upon case studies suggesting that—regardless of the research context—project outcomes are influenced by (1) the degree of public participation in the research process and (2) the quality of public participation as negotiated during project design. To illustrate relationships between the quality of participation and outcomes, we offer a framework that considers how scientific and public interests are negotiated for project design toward multiple, integrated goals. We suggest that this framework and models, used in tandem, can support deliberate design of PPSR efforts that will enhance their outcomes for scientific research, individual participants, and social–ecological systems

“Knowledge Is Power”: A Mixed-Methods Study Exploring Adult Audience Preferences for Engagement and Learning Formats Over 3 Years of a Health Science Festival

© 2015, © 2015 SAGE Publications. Science festivals enable scientists to engage with publics, but format design reflecting different engagement models is contested. This study gathered mixed-methods data over 3 years (2011-2013) from on-site surveys (N = 661) of a health science festival, exploring audience preferences for dissemination or dialogue formats (lectures, discussions, community expo, lab experiments, and day out). Irrespective of time, age–group, or gender, lectures were significantly ranked the main attraction (76.8%), most highly attended (89.1%), and most useful format (83.8%). Thematic analysis revealed five themes exploring nonformal learning motivations for audiences, highlighting that knowledge/understanding acquisition is perceived as empowering greater health literacy

Mapping the hinterland: Data issues in open science

© The Author(s) 2014. Open science is a practice in which the scientific process is shared completely and in real time. It offers the potential to support information flow, collaboration and dialogue among professional and non-professional participants. Using semi-structured interviews and case studies, this research investigated the relationship between open science and public engagement. This article concentrates on three particular areas of concern that emerged: first, how to effectively contextualise and narrate information to render it accessible, as opposed to simply available; second, concerns about data quantity and quality; and third, concerns about the skills required for effective contextualisation, mapping and interpretation of information

Mapping Public Engagement with Research in a UK University

Notwithstanding that ‘public engagement’ is conceptualised differently internationally and in different academic disciplines, higher education institutions largely accept the importance of public engagement with research. However, there is limited evidence on how researchers conceptualise engagement, their views on what constitutes engagement and the communities they would (or would not) like to engage with. This paper presents the results of a survey of researchers in the Open University that sought to gather data to fill these gaps. This research was part of an action research project designed to embed engagement in the routine practices of researchers at all levels. The findings indicate that researchers have a relatively narrow view of public engagement with research and the communities with which they interact. It also identified that very few strategically evaluate their public engagement activities. We conclude by discussing some of the interventions we have introduced with the aim of broadening and deepening future researcher engagement

An international effort towards developing standards for best practices in analysis, interpretation and reporting of clinical genome sequencing results in the CLARITY Challenge

BACKGROUND: There is tremendous potential for genome sequencing to improve clinical diagnosis and care once it becomes routinely accessible, but this will require formalizing research methods into clinical best practices in the areas of sequence data generation, analysis, interpretation and reporting. The CLARITY Challenge was designed to spur convergence in methods for diagnosing genetic disease starting from clinical case history and genome sequencing data. DNA samples were obtained from three families with heritable genetic disorders and genomic sequence data was donated by sequencing platform vendors. The challenge was to analyze and interpret these data with the goals of identifying disease causing variants and reporting the findings in a clinically useful format. Participating contestant groups were solicited broadly, and an independent panel of judges evaluated their performance. RESULTS: A total of 30 international groups were engaged. The entries reveal a general convergence of practices on most elements of the analysis and interpretation process. However, even given this commonality of approach, only two groups identified the consensus candidate variants in all disease cases, demonstrating a need for consistent fine-tuning of the generally accepted methods. There was greater diversity of the final clinical report content and in the patient consenting process, demonstrating that these areas require additional exploration and standardization. CONCLUSIONS: The CLARITY Challenge provides a comprehensive assessment of current practices for using genome sequencing to diagnose and report genetic diseases. There is remarkable convergence in bioinformatic techniques, but medical interpretation and reporting are areas that require further development by many groups

An international effort towards developing standards for best practices in analysis, interpretation and reporting of clinical genome sequencing results in the CLARITY Challenge

There is tremendous potential for genome sequencing to improve clinical diagnosis and care once it becomes routinely accessible, but this will require formalizing research methods into clinical best practices in the areas of sequence data generation, analysis, interpretation and reporting. The CLARITY Challenge was designed to spur convergence in methods for diagnosing genetic disease starting from clinical case history and genome sequencing data. DNA samples were obtained from three families with heritable genetic disorders and genomic sequence data were donated by sequencing platform vendors. The challenge was to analyze and interpret these data with the goals of identifying disease-causing variants and reporting the findings in a clinically useful format. Participating contestant groups were solicited broadly, and an independent panel of judges evaluated their performance. RESULTS: A total of 30 international groups were engaged. The entries reveal a general convergence of practices on most elements of the analysis and interpretation process. However, even given this commonality of approach, only two groups identified the consensus candidate variants in all disease cases, demonstrating a need for consistent fine-tuning of the generally accepted methods. There was greater diversity of the final clinical report content and in the patient consenting process, demonstrating that these areas require additional exploration and standardization. CONCLUSIONS: The CLARITY Challenge provides a comprehensive assessment of current practices for using genome sequencing to diagnose and report genetic diseases. There is remarkable convergence in bioinformatic techniques, but medical interpretation and reporting are areas that require further development by many groups