Background: Prior research about the sexual and reproductive health of young women has relied mostly on self-reported survey studies. Thus, participant recruitment using Web-based methods can improve sexual and reproductive health research about cervical cancer prevention. In our prior study, we reported that Facebook is a promising way to reach young women for sexual and reproductive health research. However, it remains unknown whether Web-based or other conventional recruitment methods (ie, face-to-face or flyer distribution) yield comparable survey responses from similar participants. Objective: We conducted a survey to determine whether there was a difference in the sexual and reproductive health survey responses of young Japanese women based on recruitment methods: social media–based and conventional methods. Methods: From July 2012 to March 2013 (9 months), we invited women of ages 16-35 years in Kanagawa, Japan, to complete a Web-based questionnaire. They were recruited through either a social media–based (social networking site, SNS, group) or by conventional methods (conventional group). All participants enrolled were required to fill out and submit their responses through a Web-based questionnaire about their sexual and reproductive health for cervical cancer prevention. Results: Of the 243 participants, 52.3% (127/243) were recruited by SNS, whereas 47.7% (116/243) were recruited by conventional methods. We found no differences between recruitment methods in responses to behaviors and attitudes to sexual and reproductive health survey, although more participants from the conventional group (15%, 14/95) chose not to answer the age of first intercourse compared with those from the SNS group (5.2%, 6/116; P=.03). Conclusions: No differences were found between recruitment methods in the responses of young Japanese women to a Web–based sexual and reproductive health survey. Journal of Medical Internet Research
Background: The enactment of the General Data Protection Regulation (GDPR) will impact on European data science. Particular concerns relating to consent requirements that would severely restrict medical data research have been raised. Objective: Our objective is to explain the changes in data protection laws that apply to medical research and to discuss their potential impact. Methods: Analysis of ethicolegal requirements imposed by the GDPR. Results: The GDPR makes the classification of pseudonymised data as personal data clearer, although it has not been entirely resolved. Biomedical research on personal data where consent has not been obtained must be of substantial public interest. Conclusions: The GDPR introduces protections for data subjects that aim for consistency across the EU. The proposed changes will make little impact on biomedical data research. Journal of Medical Internet Research
While patent systems have been widely used both historically and internationally, there is nonetheless a tremendous amount of controversy over whether patent systems – in practice – improve the alignment between private returns and social contributions. In this paper, I describe three parameters – how the disclosure function affects research investments, how patent strength affects research investments in new technologies, and how patents on existing technologies affect follow-on innovation – needed to inform the question of how patents affect research investments, and review the available evidence which has attempted to empirically estimate these parameters.
Redefining responsible research and innovation for the advancement of biobanking and biomedical research
by Helen Yu in J Law Biosci, 2016
One of the core objectives of responsible research and innovation (RRI) is to maximize the value of publicly funded research so that it may be returned to benefit society. However, while RRI encourages innovation through societal engagement, it can give rise to complex and previously untested issues that challenge the existing legal frameworks on intellectual property (IP) and public entitlement to benefits of research. In the case of biobanking, the personal nature of human biological materials and often altruistic intention of participants to donate samples intensifies the need to adhere to RRI principles with respect to the research, development, and commercialization of innovations derived from biobanks. However, stakeholders participate and collaborate with others in the innovation process to fulfill their own agenda. Without IP to safeguard investments in R&D, stakeholders may hesitate to contribute to the translation of discoveries into innovations. To realize the public benefit objective, RRI principles must protect the interests of stakeholders involved in the translation and commercialization of knowledge. This article explores the seemingly contradictory and competing objectives of open science and commercialization and proposes a holistic innovation framework directed at improving RRI practice for positive impact on obtaining the optimal social and economic values from research.
Crowdsourcing for translational research: analysis of biomarker expression using cancer microarrays
by Jonathan Lawson, Rupesh J Robinson-Vyas, Janette P McQuillan, Andy Paterson, Sarah Christie, Matthew Kidza-Griffiths, Leigh-Anne McDuffus, Karwan A Moutasim, Emily C Shaw, Anne E Kiltie, William J Howat, Andrew M Hanby, Gareth J Thomas and Peter Smittenaar in British Journal of Cancer, 2016
Background: Academic pathology suffers from an acute and growing lack of workforce resource. This especially impacts on translational elements of clinical trials, which can require detailed analysis of thousands of tissue samples. We tested whether crowdsourcing – enlisting help from the public – is a sufficiently accurate method to score such samples. Methods: We developed a novel online interface to train and test lay participants on cancer detection and immunohistochemistry scoring in tissue microarrays. Lay participants initially performed cancer detection on lung cancer images stained for CD8, and we measured how extending a basic tutorial by annotated example images and feedback-based training affected cancer detection accuracy. We then applied this tutorial to additional cancer types and immunohistochemistry markers – bladder/ki67, lung/EGFR, and oesophageal/CD8 – to establish accuracy compared with experts. Using this optimised tutorial, we then tested lay participants’ accuracy on immunohistochemistry scoring of lung/EGFR and bladder/p53 samples. Results: We observed that for cancer detection, annotated example images and feedback-based training both improved accuracy compared with a basic tutorial only. Using this optimised tutorial, we demonstrate highly accurate (40.90 area under curve) detection of cancer in samples stained with nuclear, cytoplasmic and membrane cell markers. We also observed high Spearman correlations between lay participants and experts for immunohistochemistry scoring (0.91 (0.78, 0.96) and 0.97 (0.91, 0.99) for lung/ EGFR and bladder/p53 samples, respectively). Conclusions: These results establish crowdsourcing as a promising method to screen large data sets for biomarkers in cancer pathology research across a range of cancers and immunohistochemical stains.
Background: Efforts to involve parents and families in all aspects of research, from initiating the question through to dissemination and knowledge exchange, are increasing. While social media as a method for health communication has shown numerous benefits, including increasing accessibility, interactions with others, and access to health care information, little work has been published on the use of social media to enhance research partnerships. Objective: Our objective was to describe the development and evaluation of a Web-based research advisory community, hosted on Facebook and connecting a diverse group of parents of special needs children with researchers at CanChild Centre for Childhood Disability Research. The goal of this community is to work together and exchange knowledge in order to improve research and the lives of children and their families. Methods: The Web-based Parents Participating in Research (PPR) advisory community was a secret Facebook group launched in June 2014 and run by 2 parent moderators who worked in consultation with CanChild. We evaluated its success using Facebook statistics of engagement and activity (eg, number of posts, number of comments) between June 2014 and April 2015, and a Web-based survey of members. Results: The PPR community had 96 participants (2 parent moderators, 13 researchers, and 81 family members) as of April 1, 2015. Over 9 months, 432 original posts were made: 155 (35.9%) by moderators, 197 (45.6%) by parents, and 80 (18.5%) by researchers. Posts had a median of 3 likes (range 0-24) and 4 comments (range 0-113). Members, rather than moderators, generated 64% (277/432) of posts. The survey had a 51% response rate (49/96 members), with 40 (82%) being parent members and 9 (18%) being researchers. The initial purpose of the group was to be an advisory to CanChild, and 76% (28/37) of parents and all the researchers (9/9) identified having an impact on childhood disability research as their reason for participating. A total of 58% (23/40) of parents and 56% (5/9) of researchers indicated they felt safe to share sensitive or personal information. While researchers shared evidence-based resources and consulted with families to get guidance on specific issues, there was an unexpected benefit of gaining an understanding of what issues were important to families in their daily lives. Parents felt a sense of belonging to this community where they could share their stories but also wanted more researcher participation and clarity on the purpose of the group. Conclusions: The PPR community grew from inception to an established community with active engagement and knowledge exchange. Both parents and researchers described valuable experiences. Researchers should consider social media as a means of engaging families in all phases of research to ensure that research and its outcomes are meaningful to those who need it most. Journal of Medical Internet Research
PhD funding as a determinant of PhD and career research performance
by Hugo Horta, Mattia Cattaneo & Michele Meoli, in Studies in higher education, 2016
This article focuses on the effects of PhD funding on research performance both during the degree and throughout researchers’ careers as measured through publications and citations. This analysis draws from a representative sample of researchers holding a doctorate based in Portugal and finds that those funded by grants during the PhD perform better than the self-funded ones. It also finds that different PhD funding sources produce different outcomes. PhD grants positively affect research performance during the PhD and throughout the career, when compared with research project grants. We argue that the latter funding scheme has more limited effects because of the constraints typical of early stage researchers involved in research project dynamics.
What have the best brains of Europe come up with to improve health and wellbeing with the help of Information and Communication Technology (ICT)? This report offers an overview of the most current (on-going or recently finished) European funded projects in the field of ICT for health and wellbeing (‘eHealth’).