Health and Medical Short Bites #1 - Funders and publishers - 2017-05-09

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Health and Medical Short Bites #1 - Funders and publishers - 2017-05-09
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The Funder perspective - -- Dr Wee-Ming Boon: NHMRC statement on data sharing -- Jeremy Kenner: Review of the National Statement on Ethical Conduct in Human Research 9 May 2017 A Publisher perspective on data -- Peter D’Onghia, Senior Journal Publishing Manager at Wiley, has a portfolio of journals in health and life sciences and will discuss the new Wiley data policies
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Firmin to our webinar this is the verse in it series of three webinars I'm hosted by Anne my name is Kate LeMay and I work in the camera office of Anne's and I have a history that I was a pharmacist and then I worked in medical research and now I'm a cancer research data specialist and I work with our programs and information services where we are dealing with sensitive data and in particular health and medical data so as I said this is our first webinar in the series that we're going to be speaking about funders and publishers in relation to the publication of health and medical data our second webinar is next week about storing and publishing health and medical data and the third webinar is the week after on the 23rd of May about ethics legal issues and data sharing so I just wanted to quickly introduce a few concepts everyone about Ann's because
some people this might be the first time that you've come into contact with us so we're an N Chris facility funded by the federal government and we work to make Astraeus research data assets more valuable for researchers research institutions and the nation so just as a
bit of a background to why we're talking about you know sharing health and medical data firstly the Productivity Commission has put out a report that just was released yesterday about data availability and use it's very long report and that's got the potential to change the data sharing landscapes in Australia in addition there are several international medical research funding bodies that have got policies about data that is that is from research funded by them being required to be shared and there's a lot of researchers within Australia who are working on collaborative grants with people from overseas from these funders who are already coming into contact with these policies where they're needing to share the data that comes out of these projects and there's also quite a few journals
both internationally and in Australia that are either thinking about or implementing policies around requiring statements of data availability or for data behind the findings from that paper to be made available so the last thing that I would like to point out to you before I hand over to our speakers is
that and has quite a suite of resources for medical and health data and this is one of them this light is one of the handouts that's in GoToWebinar so feel free to download it and have a look but it's basically pointing you to our sensitive data homepage where you can go and explore all of these resources that are related to medical and health data so now I'd
like to introduce our three speakers so firstly women Brune is a senior research scientist in the research translation and policy branch of NHMRC and he provides scientific and policy advice would MH energy multi strategic projects and peer review previous to that he was the research director at the Heart Foundation and a research fellow at Monash and the glory Institute women also has Jeremy canner in the room with him and who will be speaking a little bit after we meet and he's the expert advisor for ethics at the NHMRC and evidence in life and governance branch at NHMRC he is responsible for and contributes to a broad range of programs and projects related to health and research ethics clinical trials and government's of research and provides advice internally and personally on these matters in his earlier career in the United States he worked as a teacher practice law and conducted public education and research in bioethics and swimming in Jeremy wrote in Melbourne and we've also got Peter opener it also in Melbourne who is a senior journal publishing management manager Wiley and he's worked while I for over 10 years in the research team on health science and life science journals he's worked in publishing for over 20 years for various publishing companies in the Australia and the Middle East such as Lonely Planet Explorer publishing and the age so I'm going to hand over to weaning now and winning is going to speak about the NHMRC statement on data sharing thanks Kate and thanks to Anne's
for the invitation so that you know HMRC
is a supporter of open access in general and has an open access policy follow
research supported by HMRC since 2012
and the original open access policy mandates that all publications are to be made openly accessible within twelve months of publication and in recognizing that data management and data sharing is a major benefit to researchers and the community in general NHMRC has to release the statement encouraging the sharing the 2014 so it doesn't actually mandate data sharing but rather encouraged the sharing in bits because the data feels evolving very quickly while the field is maturing and it's also for other aspects of data to actually catch up first and these can be ethics and privacy technical and quality issues and it freezes everything that states are related and not to mention the actual skill and knowledge that is required to think through the whole process of data sharing as well so if you look at the NHMRC data sharing statement nicholae talks about the use of life cycle thinking when it comes to data and life cycle thinking basically means that data management should be thought about even at the planning stages of the project and not just at the end as an article so thinking about how data is actually managed from the outset will ensure the quality of the data is high and security and accessibility of the data is made well and the life of the data is managed and made available a cliff forever and and I'm sure many of us have come
across a situation where we get to there where we needed to go back to some data from years ago and the data is stuck in a lab booking from where oh and it's lovely this we know you view with excessive and I know have been there at the end of that cycle you see there and not being able to find data at the last minute so that's what we're trying to avoid at the same time so the data sharing statement is is at the line with overall government strategy of Ghana sharing and escape has mentioned the relativity Commission just released report yesterday and we are totally aligned with them with things that it has come from government as well so all in all sharing up data it's about maximizing in the benefit from data derive from a quite a limited pool of resource and minimizing wastage and it's also about considering the community and the ethical aspects of the data sharing I mean as the collectors of data we have the ethical responsibility to ensure that data is properly not wasted so it is basically to make the best use of resources coming from public funds and the moral obligation that we have being ethical in the research behavior that we have so leading on from this it's worth noting that the challenges faced by NIH Marcy and health and medical research in general is quite different from say sharing data in astronomy engineering and music the challenges include privacy of individuals and patients when dealing with public code genetic information overall health information and other tricky sections are include sharing outside clinical trials data and in particularly non aggregated data and and these are some of the things that we we often need to think about when coming up with policies at anything rusty so now I'll pass you on to my colleague Karen antenna will talk to you further about this afternoon and the NHMRC is as the
peak body will expert advisory body in Australia pool or research ethics and research governance issues under the code of conduct which which wouldn't not going to be discussing today explicitly we prove we produce guidelines and one of the most significant one that we produce for search ethics is something called the national statement on conducting research so this this document which has been in
existence in one iteration or the other since 1999 it was preceded by earlier statements is a bit unusual on a global stage because it is much shorter and much more succinct and much more principles-based than some of the other documents for example in the United States or Canada which are much longer in more detail it's a document that mixes high-level guidance with some prescriptive guidance and some recommendations for best practice it there are sections of the document five of them that it covered the various things that are listed on the Common Era slide the key principles the main issues of consent and risk special considerations for different categories of research into populations involved in research and then the establishment operation of HRC is an institutional and research responsibilities this document applies to all human research but importantly it applies only to assert which and all these about absurd cultures involve human beings or their their biospecimens or data other documents covered example animal research and activities that are not research but sometimes at similar ethical issues such as Quality Assurance activities or its evaluation etc this documents went to going to fall of you I mean between 2004 2006 fielding a document in 2007 it is a caret-- document although it's been amended in smoking in the various ways since then it's now undergoing a an ongoing review and we are addressing first one of the section that deals with the various categories of research and additional sections will be reviewed in accordance requiring as we said by virtue of consultation with the users of the document so I will guarding data the guidance in the National statement really attempts to achieve two core objective it's the first disc researchers to understand and minimize the risk of the authorized user disclosure sensitive personal information that they've obtained for these in research so it's a awareness-raising activity and the second is to ensure the appropriate collection use in sharing of data or information so as to maximize the ethical use of the data and information search and this presupposes it is in fact ethically probably to share data and to the extent that is some pathetic appropriate ending lanes that are complete so I wanted to do this in order to achieve these objectives you need some principles to guide the consideration of the ethical implications of specific research project and you also need some suggestions for resolution of the tensions between these two core objectives that is to minimize the risk and maximize the use the necessary framework for the pair of the principles including what what we when is phrased in the in must language and insurance language is is part of the National statement it also includes props for consideration by reviewers regarding whether the proposed mechanisms of processes that they wish to use to address their mitigate the risks or adequate adequately protect participants and are ethically appropriate acceptable needs of connect so lives of the use of the data but the National statement doesn't provide prescriptive directions regarding which mechanisms or processes to use except for some broad exceptions to that and that is for a Attucks committees and other review or is to make assessments fixed on their own judgment of what is proposed for our specific research project with reference to a national statement and other guidance now but it's often the case with ethics that are these these two core objectives our intention and the National statement and the deprived including the products are exist in order to help people address those tensions and mitigate the risk looseness as possible one of the things that it also doesn't do is it doesn't address the legal aspects of values with reference to for example privacy legislation although the ethical guidance International statement takes cognizance of the existence of privacy legislation and the be over in the general concepts that are occurring there and in fact the nature C has responsibility for developing the guidance for hours for researchers with respect to the application of practicing legislation so an International statement that we've been discussing the section that deals with consideration specific toward certain affections of fields is in the final stages of revision as we speak it has been radically we conceptualized and restructured so that it does not specifically refer in categories to types of research as its overall structure in its redesigned to address the elements of research which are listed on the slide here that are characteristic of most not all research projects and it then provides very specific guidance for certain kinds of research that don't fall into as the more generally applicable categories and this includes research involving biospecimens laboratory-based research long biospecimens human biospecimens genomic research rich and i don't be a new chapter related to subject on xenotransplantation research which have very specific requirements that don't apply otherwise the rest of the categories of the search are all part all subject to the deities in the in the section generally with specific comment thats related to for example clinical research but they are not separate it is not separated as a separate category for variety of reasons in each of these elements that is dying from the ethical considerations related to these data and obviously in particular in elements four or five and six however each of the elements addresses these issues in particular for example the types of things that need to be done by two participants in the consent as part of the consent customer I'm in addition to the National statement although this wasn't specifically explicitly on the agenda there is a National Ethics application form which is not longer called international ethics application form and has now been replaced by something called the human research ethics application HR EA this document will be of great assistance to researchers in developing their projects as well as submitting book with their proposals and it's a it's a portal not just an application for the key point I wanted to make here was that they're three sections of the score wonderful section which are questions related to data and privacy and so they're 18 questions in this section related to data characters and activities that are planned for with the data and this of course records suspect an international statement but includes considerations and questions that researchers need to address that go beyond the guidance that's provided and the National statement document so thank you for the opportunity for HMRC to contribute to this session today okay
fabulous we're going to have Peter speak now so thank you so much winning and Jeremy for sharing us sharing with us those policies and things that are happening at the NHMRC excellent thank
you well thanks Kate for that and thanks to ants for inviting us them to speak in this webinar
I guess firstly I just should say it Wiley we're committed to open science and we believe in it strongly as I guess essentially it's our business disseminating research is our core business so our open science strategy focuses around five main things and I'll just explain those quickly now and then go into detail on couple of the manor so open access nearly all of our journals them offer some sort of open access through our programs there open access programs clearly we help improve the visibility of research and comply with various open access mandates authors of course can retain copyright and choose appropriate licenses as they wish such as Creative Commons etc open data well that sums the reproducibility and verification of researcher data method methodology and reporting standards well we take this seriously again we are committed to open data and to improving the openness transparency and reproducibility of research we don't recommend any limiting licenses or such to our partners and suggest and use various creative common licenses we think this protects the long term integrity of the research by making the data methodologies and reporting standards openly available it also complies with some funders who request that data be shared of course so thirdly open standards collaborative interoperable and global dissemination standards so new journal first technology and infrastructure infrastructure helps increase the discoverability of research of course new technology and infrastructure helps to publish journal articles and integrate all major research outputs text images images data and code preserve more of your research activities as part of the scientific record and help other researchers find your work when and when they need it most open collaboration well that's a more inclusive and networked research practices so new technologies and pressures on researchers to find new ways to collaborate I see NASA's publishing company company investing technology to help viewers authors collaborate with peers and create the best possible outcome for your research we believe this should help facilitate data sharing text and data mining for easy collaboration between researchers so through annotations of work through article sharing policies which we support and have at every stage of production a publication and platform text and data mining as well we believe work will get out there more openly and easily finally of our five main points is to to have open recognition and reward that's integration of researcher and identification and evaluation tool so simply that's to increase recognition of authors and their work to create an orchid ID when you submit your paper make that easy then you can connect you with your research activities maximize and measure the impact of your work through kudos and out metric get credit in the end for your peer review work as well through pub lhans or programs with pub lhans that recognize and reward the contribution of peer reviewers so
throughout our journal level data recommendations well that the thing I really have to say is that we're a partner with societies we don't publish most of our journals on our own we're partnering with colleges societies associations etc so therefore we can't make our partners do anything so we work and collaborate closely with them to come up with the best policies and the best recommendations so there's three recommendations that we suggest and that is to encourage data sharing to expect data sharing or to require data sharing the three main ones as you can imagine so our recommended default position for our society partners is to expect thick data to be made available it's probably a little stronger than what Lamy and Jeremy were talking about before where they encourage and so it's really up to each individual journal and Society so generally many researchers will be more across this than me but check what your society wants what your journal wants what your funding body wants so then there's a data accessibility statements so these are a consistent way that articles can point to the data that informs their results so these statements should be placed within an article to identify where this some data is held so it should include how the data can be accessed through a deal I are a link for example what conditions are placed on it you know again is it a Creative Commons licenses that are restricting licenses so that's really important and finally there is the data citation structure like a journal citation referencing and this has to be there to ensure consistency now currently it's often referenced in different ways that we don't have a clear structure for and we are working with other bodies to come up with a I guess a simple way and a standardized citation information for the data so what do we do and how do we make it easier for our authors the first thing we do is suggest that you as an author choose the best way that's for you if your discipline has a certain place to store the data that's fine do it that way but if you don't we have we suggest and we recommend the use of six year so we have done this in a seamless way through our submission stage so therefore all authors can put their data up onto figshare at no cost to them and in a seamless way so we don't have a strong view on where the data should be held as I say it's really dependent on Journal or discipline but we do suggest and recommend fix it's easy for authors who you submit their papers to Wiley Jones so I'm using this repository it's free can be dealt with a submission stage and is pretty easy and seamless for office now so I think I've run through my five minutes but that's all right I'll just summarize basically so our position on health and medical data is pretty simple we strongly support the open science I've been done and believe it will drive faster and more efficient research we recommend data policies to our partners and only recommend but ones that are appropriate in their fields and which encourage expect or require authors to make their research data accessible and finally we facilitate this by encouraging authors to use their most relevant repository or as I mentioned we give free and easy access to the seek share repository thank you thank you very much to all
of our presenters who've joined us today I hope that this is been able to get their message across to all of our audience who have called in that there's a movement in the sector both from publishers funders within Australia and internationally that everyone is thinking about data how it supports research how it helps reproducibility of research and will improve outcomes for you know particularly in the health and medical field improve outcomes for patients and people with you know our medical conditions who want better treatment better outcomes so we've run out of time today so thank you very much to our presenters today and thank you to
everyone who has called in today