 All right, shall we get started? Hello everyone, my name is Kristin Kang, I'm the manager of the Hassanda program. It's my pleasure to be visiting Ghana Country today in the wonderful Samurai building here in Adelaide. We have a few dozen people attending here in person and a few hundred attending online. We're here today to showcase the achievements of the Hassanda program to launch a key output of the program, the Health Data Australia platform, a new online portal to help share data for health research. Myself and Adrian Burton from ARDC will take you through that shortly and will be followed by three members of our Hassanda network. But to formally kick things off today, I'd like to hand over to Professor Steve Westling. Steve has been the executive director at Samurai for over a decade and his former roles include the chair of the NHMRC Research Council, the director of the NHMRC Council and the president of the Australian Academy of Health and Medical Sciences. So Steve, thank you for hosting us today here at Samurai and for getting us started. Professor Steve Westling. Thank you very much and thank you for inviting me to do this. And on behalf of Samurai, welcome. We love to have people in our building, we love to show off our building, we love to show off Samurai. But today we're showing off Hassanda and that's very exciting for us. So I'd like to welcome everyone in the room and also everyone online. And importantly, before we start, I'd like to acknowledge that we're on Ghana land. I'd like to acknowledge Elders Past and Present. I'd like to acknowledge any Aboriginal and Torres Strait Islanders in the room today. And as I often do, I'd like to acknowledge the magnificent work that our Aboriginal and Torres Strait Islanders in Samurai do. So we have about 30 Indigenous researchers based in this building at the Women's and Children's at Flinders and across the state and they just do amazing work. And I think it's really important to acknowledge that. So as the Executive Director of Samurai and actually I'm about, this is sort of eight days, I think, away from finishing as Executive Director of Samurai and moving on to a new job. And that is the CEO of NHNMRC. So this is doubly interesting to me because not only has this been a fabulous outcome in South Australia and Australia-wide, but it's something that's of great interest to me from the data point of view and Samurai's always been very interested in data, but also from the NHNMRC point of view about how we can help in this area in the time ahead and particularly thinking about data, thinking about guidelines, thinking about registries, all those sorts of things. So in South Australia, Health Translation SA led the collaboration of partners in South Australia to develop the Hassander node and Samurai amongst all the partners in this launch have been very active in this developmental stage. The node here is one of nine Hassander nodes spread across Australia and I think it's fabulous to see such a truly collaborative and national research network and one I'm sure can be modelled for other aspects. Because I think we all recognise that through research and research funding and most research funding we have to accept is public money and through that funding we create a lot of data and more often than not in fact I think 99% of the time none of that data is reused and so this development here to look at that data and look at how that data can be reused is really very exciting and I think most Australians would expect that if we develop that data utilising their money and often their time if that happens to be a clinical trial or those sorts of things that that data would then be available to others to ensure those assets are widely used to improve health of Australians. So this Hassander asset, the Health Studies Australian National Data Asset led by the Australian Research Data Commons should really be congratulated on developing the infrastructure which enables discoverability, accessibility and reuse of health research data and such an important outcome yet I think all you guys would realise how difficult that's been, it's really been a huge challenge but it's one that I think has been done remarkably well. So the Health Data Australian Platform has been co-designed with the Australian Research Community and it provides primary searches and data custodians with a mechanism not available before as I mentioned whereby we can meet their public funding obligations to share the outputs of research and therefore other researchers seeking data to really develop their own ideas can go to this platform and it provides a central, seamless, streamlined national resource for achieving that. And I think if we think about it over the next few years this is going to be incredibly exciting. We're looking at clinical data at the moment but in the future just imagine if we could share all of the data assets that we have whether that includes registries or the amazing data that other agencies within the Federal Department have and so on and I think that's going to be very exciting the Australian Research Community. So I would like to take this opportunity to congratulate the Hesanda program to congratulate the Australian Health Researchers who have been involved congratulate all the people in this room and online who have been involved and I'm really looking forward to see how this platform gets utilised, how important it becomes in research in Australia and I've got written here that I now have to say the health data Australian platform is now officially launched so thank you very much and I'm sure that we're going to hear more detail and more complete understanding than I have just given you from the speakers following me but I have to introduce Adrian Burton and Dr Adrian Burton has had 20 years experience in applying emerging information technology to research at a national and international level with backgrounds in IT, academia, government and linguistics he addresses opportunities holistically ensuring that policy, people and governance frameworks work alongside systems, services and infrastructure so thanks Adrian and Adrian will be the next speaker Thank you Steve The ARDC is part of a national scheme NCRIS, the National Collaborative Research Infrastructure there are 24 national programs in that scheme it's a very innovative policy approach that acknowledges that not every, you can't address everything when resources are split into research projects or research institutions or even state-based initiatives some problems need special resourcing to be addressed at a national scale and that's what NCRIS sets out to do so in that spirit in 2019 and thank you Hugo and David with the CSIRO, ARDC set out to do consultation with the health and health translation community and it was identified that at a national scale there is an amazing potential for the secondary use of health studies data for you to support health translation so I have some slides that I could show you here that's the NCRIS partners so the HASSANDA initiative was then born and it is managed or guided by a steering committee that includes ACTA, ANZ CTR, NHMRC, CHF Research Australia, RR Cochran and PHRN helping to guide it to make sure that it responds to research requirements the initial focus in the programme that we are just establishing now is clinical trials data so in the middle of all of that so 2019, guess what happened in the middle there was a little pandemic that slightly shook a resourcing and focus on this establishment project but it did serve to underline how important it is to get high quality data from good health studies access them from multiple sources bring them together people like Julian then synthesising it changing a guideline and then improving outcomes for both health and the whole economy so that really is the although we weren't ready to deliver we were right in the middle of our development programme it's really underpinned the importance of this kind of activity so what kind of infrastructure is required for supporting secondary use of data the ARDC brings a very holistic approach to data if you go from right to left in that slide we're doing storage and compute the high technology stuff, data and services the really content and informatics platforms and software for access and analytics and then people and policy we bring to the table all of that in a big package a holistic package for research infrastructure Kristen will be sort of walking us through some of the technology sides and the systems and procedures that we've established but it is really important to highlight that last block people and policy as a national network, Cassandra has been able to address questions of data governance ethics and consent and the whole culture of data sharing and value for society and we've been able to do that at a national scale and it's an absolutely integral part of infrastructure that work continues and we hope over the next months and years to work with research institutions academic societies publishers and funders to create a coherent policy environment for the infrastructure for data sharing what else have I got to say let's have a look at another slide so this is the launch of a nationally coordinated infrastructure to support secondary data started in 2019 unfortunately I've got good news and bad news for the participants it's not the finish line it's the starting line in fact this is where we start to have an infrastructure that can actually support the secondary use of data that data can have its outcomes and impacts for society so ARDC luckily the increased program is a multi-decadal program that has funding for fundamental infrastructure for leading edge research and we hope to push that out what we'll be doing is the same challenges that we brought to the table for this community data discovery, secure environments, integration analytics we'll be pushing it out to some further stakeholders as well and looking for the same kind of holistic approaches so what does this mean for our Cassandra colleagues it means that we have the opportunity over the next five years to really bed down what we started here with clinical trials and make it work and make it deliver the outcomes that we set out so we've done our activity we've delivered an output it needs to generate support research and start to have those outcomes and we are here for the next five years to work with you to deliver that it also gives us an opportunity to think about how we will mobilize that kind of health studies data for using other technologies and analytics etc how we will mobilize it to really make a difference in the health translation we look forward to working with you for the foreseeable future thank you very much thanks Adrian so I'm now going to take you all through the platform that we've built and how it works a quick note that we thought we were on Zoom with a few hundred people rather than risk a Zoom mishap we're not going to be showing you the live site and trying to switch screens there so we've got a series of screenshots to show you not quite the same experience but the site is now live so please do explore it at your leisure so welcome to Health Data Australia a central place where health researchers can search for data hold around the country and request access to that data so if I'm a researcher I site here with a simple keyword search when I perform that search it takes me to categorize search results and each listing that we see here is a clinical trials data set this list is going to grow over time and we also will begin listing data as we heard before from other kinds of health studies such as cohorts, registries and so on as a researcher if I click into one of these results I see a description of the data set if I scroll down let's just pretend that I scroll down the page there I see the related funders of the clinical trial the researchers and organizations involved in that clinical trial and the publications associated with that trial and with that data set I scroll a little further and I see a persistent identifier for the data set this allows us to track that data set's use we also see information about the trial that produces the data and this information is pulled down from the ANZ CTI ANZ CTI information includes the details about the data access conditions and hyperlinked information about the study protocol and data dictionary so as a secondary researcher if I'm looking at this if I see that this data could be of value to my research perhaps from my systematic review or to help develop my clinical guideline I log into HDA I click access and now I get to fill in a form standardized data request form so I give details about who I am and the team that I'm working with details about my project including the scientific rationale for my project and the design of my research I give details about what I intend the outputs of my research to be will it be a journal article conference presentation student thesis etc and importantly I give the details of my ethics approval supporting documentation then I click submit so that request that request is then sent back directly to the primary researcher or their delegated data custodian as a custodian I get an email notification about the request I can then log into my own dashboard in the platform and see the new request that I've received as well as those in progress and action them if I click into the details one of those from the dashboard I see the summary information about the request and then all that detailed information that the requester provided me is converted into a PDF for easy viewing but also for easy distribution to a trial governance committee if required so as a custodian as a clinical trialist I can use the platform to respond to the person making the request now the platform has a flexible workflow for responding to requests and it allows the custodian to apply their own governance policies to ask for more information from the requester and to approve or reject requests as they deem appropriate so this is a really key point Health Data Australia doesn't replace or dictate a trial's governance or data access arrangements it simply uses a common framework for responding to requests and it allows the requester and the custodian to track the progress of all these requests in one place so I'm going to keep this brief and not technical I do want to emphasise a key message for trialists who believe in collaboration and want to get the most out of their data but understandably have concerns about some of the implications of data sharing so the clinical trialist out there the outputs of your research and most importantly your participants data stays within your control it's not stored in the Health Data Australia platform similarly your governance policies and procedures are your own the platform will help you respond to data requests it will complement your governance but it doesn't tell you how to do your governance what our platform does require is metadata so these are the descriptions of your governance and the descriptions of your data it's not the data itself it's not the sensitive stuff that always stays with you but to help researchers find you in your research we need those descriptions in that metadata and you can do that by contacting your local node so we have a network of nine nodes around Australia and they're really the key operational units of our HDA platform just one more quick note you don't have to have ethics approval to be included in Health Data Australia and if you have questions about any of the things I just described or about getting involved please reach out to your local node who can guide you through these issues so as I said before as a secretary of searcher I can come to the platform I can search that non-sensitive metadata and I can submit a request as we saw before the request is then sent to you the trialist and you can do it against your specific requirements if you determine that that request meets your requirements you make arrangements directly with the researcher for them to access the data so again these two key points that I really need to hammer home the HDA platform holds only your metadata and you the trialist decided for a researcher can have access to the data and how they access it so that's the platform that we've built in the HOSANDA program it was a massive collaborative effort it doesn't make it all work and a lot of complementary resources that have been developed over the last couple of years to help researchers to share their data it would take another hour to highlight all of those things so I'm not going to speak about those today I'm going to focus on the breadth of perspectives that have contributed to HOSANDA and helped build Health Data Australia Adrian already discussed our advisory committee who have guided the program from its inception but three years ago we began public consultations to hear the perspectives and the principles of the broader health research community so this includes trialists includes health consumers includes so many people and I'd like to thank those 200 plus individuals who gave us their time shared their expertise and their lived experience and set the direction for the work that we've done I also need to thank the editorial team that was drawn from that community as well as the AIHW an actor who partnered with us so after speaking to the community about those requirements their requirements we then started co-designing a solution and I say co-designed because at this stage we had about 100 people with relevant expertise contribute to a series of working groups the majority of these people were drawn from what are now our nine HOSANDA nodes so this is a network of over 70 Unis MRIs, clinical trials networks and other health research organizations seven of our nodes provide regional coverage in most states and territories the other two nodes have specializations one in cancer trials and one in mental health trials now that's too many people and too many organizations to name check in speech but thank you everyone and for people out there please contact ARDC we will put you in touch with your local HOSANDA node so after that large collaborative design effort our node network and integrate their own systems and procedures and they've been working tirelessly to onboard existing clinical trials but importantly they've established the policies and procedures that will allow data sharing to become the new normal for clinical trials in Australia into the future I also need to acknowledge a few other key development partners here ANZ-CTR who have worked with us throughout the process and we look forward to continuing work with them the CTIQ who developed a template to help trial escape participants with consent to share data so please go and check out their informed project and to ACTA who continue to help guide our engagement with clinical trials networks and participants I also need to thank some ARDC colleagues these are our developers without their work there'd be no HDA platform they're going to hate that their photos are on screen but they should get some recognition for all the hard work that they do thanks also to all these ARDC colleagues who contribute to the Cassandra over the last three years we have metadata experts sensitive data and data governance specialists in informatics, systems and policy advisors all working a lot of the time behind the scenes finally big thank you to my colleagues on the Cassandra team Adrian for his patronage of Cassandra Reese Williams for the wealth of experience that he brings working with the health research sector and to Amanda Tombolado for the tireless enthusiasm that she brings to our technical development work so thanks to people who are part of Cassandra and the 80 odd organisations who partnered with us it's a privilege to lead such a significant collaboration thank you well done to everyone who contributes from around Australia so now that I'm done I promise I'm done we're going to hear from three people with different takes on Cassandra so to begin with I'd like to introduce Delaine Smith Delaine is the CEO of the Australasian Leukemia and Lymphoma Group and the former chair of the Cancer Cooperative Trials Group this group is comprised of the 14 Australian Cancer Trial Networks and we're very lucky to have them as part of Cassandra thanks Delaine good afternoon everybody my name is Delaine Smith I'm the CEO of the AWLG however it's my very great pleasure to represent the 14 Cancer Cooperative Trial Groups of Australia that have been a part of this node we have really enjoyed the experience of ongoing collaboration and I'd like to thank Sahamri for hosting us today for this forum so I just thought I'd start with a couple of slides that are well known information to us all but to help really set the scene as to why this actual project was so important to the 14 Cancer Cooperative Trial Groups in Australia so you all know that it's absolutely critical to run clinical trials for the improvement and treatment outcomes for patients to provide physicians and patients with new treatments and to improve medical knowledge the government and industry in Australia invest over a billion dollars annually to clinical trials in Australia we rank the middle globally for clinical trial activity per capita we are well renowned internationally for the quality of our clinical trial outputs most of the groups in the Cancer Cooperative Trial Group node are also New Zealand groups as well so we're Australian and New Zealand so in actual fact New Zealand is a big part of what we do and a big contributor to our clinical trial programs and there's some really key features here in Australia that make it a great place to do clinical trials we have universal healthcare Medicare for everybody standard of care tests and treatments we have a good solid public hospital system in Australia that is supported by state government jurisdictions and government funding we have a national drug regulatory program that has good methods and good assessments to get drugs to market in Australia through the TGA and the PBAC we have a national program for lead ethics under the NMA which means we can fast track ethics approvals faster than a lot of other countries that we get compared to in the world we have uniformed site contracts that we can use to get sites operating quickly with the clinical trials that we want to run and we have a national accreditation scheme that has recently been introduced for the benefit of our hospitals in our hospital clinical trial departments so you can see here we've got a good framework for running clinical trials in Australia for the design and the conduct of clinical trials having the same problem that you had Adrian okay so some other information again well known to everybody in this room this slide is a little bit out of date because ANZ-CTR have produced their data that goes up to 2020 now but half a million people in Australia are participating in clinical trials we know that there has been a big shift in commercial clinical trials to academic investigator initiated clinical trials being run in Australia over the last 10 and 15 years there is a decrease in the average sample size and this is not so I suppose a surprise to anybody in the room given the advancements we're making in cancer care particularly so we are looking at more targeted therapies our sample sizes are getting smaller so our populations are getting more specific so we actually need to run more trials to get the bigger effect the bigger opportunity for patients to be getting access to treatments quicker so I've set the scene here you can see why in cancer clinical trials number one priority in Australia and why making our research that we are conducting more valuable for the long term through a program like the project that we've just run with ARDC and the Hacienda team so who are the nodes? we are 14 groups we represent investigator initiated trials so we are all member based organisations each group has at least a thousand members in the group of clinicians researchers, scientists, biostatisticians study coordinators all the specialists that you can think of that are involved in the treatment the care of people who have cancer in Australia we all conduct multi-state clinical trials so that is a big underpinning thing across all 14 groups we have a lot of similarities in the way we are governed through our membership arrangements but also in the way we operate clinical trials so we already as a cancer network had very well established relationships the youngest group out of the 14 of us is 10 years old the oldest group is 50 so we've got a lot of experience we've clearly got hundreds of trials that we've conducted with great data sitting there that actually should have the opportunity to be reused for secondary data research projects so why did we want to become involved? I think I've convinced you surely hopefully my enthusiasm has convinced you as to why this is so important for all of us but actually it was a no-brainer from the very start for us individually not one of our single cancer clinical trial groups could have sort of gone into this and tried to establish ourselves as a node so it was a great opportunity for the network we already had as the 14 of us to come together and do this as a networked project it seemed a terrific opportunity to continue the strength that we were already making in terms of valued data contributions and valuable clinical trials in Australia the project was actually also at the early stages addressing things we were already starting to question with ourselves like oh how can we you know make more of the trials we've conducted after they've published more available, more impactful available for other researchers and we ourselves did not have a uniformed way of doing this so this was looking like a really good capacity building project to be involved with and to be able to be involved from the very start was very attractive to us as well rather than having something that's placed there and said there it is we were actually allowed in this case to get involved actively with the project development so the aims of the national data asset you know to increase the value of data collected in health studies this was mutually agreeable to all of the nodes from the very start when we started talking about the opportunity the aim that ARDC has to improve capacity for data sharing and secondary use of data again something very important to us and we see is something that will be very successful over the coming years we saw that this will have a immediate impact on the past trials that we've conducted and it will have an impact on the current trials we are running and it will give sustainability to the future trials that we'll be running through our cancer cooperative trial groups the infrastructure is absolutely needed and a couple of our groups had already been able to have contact through our membership networks from internationals that were starting similar projects and we were getting approached to say should we be putting our Australian trials into international platforms similarly so it was great timing because it was like no we want to invest in our Australian researchers it is so important to be able to invest back in Australia to keep the specialties that we're developing here in Australia so it is very attractive for us to get involved in this project and the fact that we're all being great trialists in our groups for so long there is actually a lot of things about the Hesanda project that were new to us in terms of data and reusing data so it was a good learning opportunity it was a bit of a steep learning curve at the very start but this concept of a federated model that supports the coherent data practices that standardises compliance ethics, governance was very much welcomed by us all and with the funding that we received through being a successful node we were able to employ a project manager Martina Kerezzo who is here in the room who is an absolute star who has led this whole project implementation for their cancer cooperative trial groups so collaboratively working with the node and with ARDC has helped deliver the aims of the project and through this we've been able to create local excitement in each of our groups we've been able to get some education and teamwork going and then be able to contribute it at the group level so what have we done we appointed a project manager we've joined and participated in various committees and working groups and the worker bees which has been a big part of the last couple of years we've been able to actively participate in the design and the development activities, produce the stops the guiding documents use the experience that we've had in all of our individual cancer groups over the years to actually put forward the best practice and the best way to get these forms and tools and templates going we've been able to better support ANZ CTR which is so important for us to do as a nation we've conducted training for researchers improved awareness overall and we strengthened just locally our networking as our cancer cooperative trial groups and did I say we've put forward 49 trials sorry we've put forward 49 trials I just want to make it clear Martina has done this work we've put forward 49 trials into the start of the project so we're very proud of that and we thank the team for their support in that so going forward we are absolutely looking forward to the continued work our members of each of our cancer trial groups are excited to be able to continue to see that this will be the value of the contribution our trials will continue to make we will be introducing more regular training into each of our cancer cooperative trial groups and of course now the start of design of our trials in all the groups we will have this standard methodology for design that starts to plan for the end and the reuse of the data and data sharing capacity and there's a couple of champions that we would like to thank in particular Kristin, Rhys and Adrian an amazing tone, great culture there are so many lovely people in this room and online and I think it really comes down to the three of you just been terrific so sincerely from all of us thank you very much and everyone else in the ARDC and Hysander thank you so in addition to the 49 trials that we contributed I get to actually invite my friend Wendy so Wendy Keech has led the health translation South Australia since 19 and currently serves as the company's executive director in this role Wendy advocates to bring together the expertise and strengths of partner organisations to accelerate the rate of translation of evidence into healthcare to improve the health system and positively impact patient outcomes under Wendy's leadership HTSA has grown to incorporate 11 partner agencies that's fantastic Wendy is amazing and continues to create and accelerate impact for the health system and its consumer base and again the consumer base our patients this is absolutely core to what we're all doing prior to her role at health translation South Australia Wendy amassed a wealth of experience in the health and medical sector during her 11 year tenure at the National Heart Foundation she directed and led the state heart health programs while spearheading the national warning signs of heart attacks heart attacks strategy do you think they designed that to really put people up when they did fantastic sorry in her subsequent roles Wendy played a key role in driving impactful research projects at the Walner-Paringa Aboriginal research unit within the South Australian health and medical research institute throughout her career Wendy has demonstrated a strong aptitude for developing implementing and evaluating evidence based programs her broad range of expertise includes prevention, public health, heart disease physical activity, tobacco control and nutrition and just a fantastic person so welcome up welcome up everybody anyway lovely to be here today and it's actually great to have people in South Australia and certainly online as well I'd also like to acknowledge that we're meeting on Ghana land and paying my respects to elders past, present and future and any Aboriginal or Torres Strait Islander people in the room and online as mentioned I'm going to give a little bit of a talk around the way our node worked and it's really different to Delaney so it's great that we both can share our perspective the South Australian node as was mentioned is under the umbrella of health translation SA and we at NHMRC accredited research translation centre as you may know there's 14 of those across Australia and we come together in something called R or the Australian Health Research Alliance you will have noticed it on the advisory committee the Alliance actually we come together as a council once a month but what happened at the start of this journey is that the ARDC team particularly Adrian came to the ARRA council and actually presented a standard to us and made us think about how does that fit into the data vision that ARRA has for Australia and in fact it fitted pretty well so what happened was we as translation centres were invited to think about whether we wanted to be a node or not and in fact six of the ARRA translation centre or the research translation centres in Australia put their hand up to be a node and us in South Australia it just made sense we already had our 11 partners across the state and it made sense that we could position ourselves to really think about this opportunity with clinical trials and the data that comes from it and how we could really extend its value so as I mentioned there was six research translation centres that applied and so we now sort of have a network within the network which is kind of cool so in a health translation essay as we mentioned has 11 partners and our board and the chair of our board is here today our board actually embraced to Sandra and realised the value that it had to all of South Australia and since we started the journey some years ago we've really worked hard to reach across our partners particularly there's been two partners that have been instrumental in going from a blank slate to something that's actually working in the state at SAMRI, SAMRI here was able to transform its systems and upload some clinical trials into the catalogue so that we were really able to bring SAMRI on this journey now really this is really important for everyone to understand that up until then we weren't in this game you know it actually, obviously there were lots of clinical trials happening across the state but to actually be thinking about what are the systems we need to share data is a different step so having SAMRI come on board and the technical support here was really important for us to start to conceptualise what are the changes that need to happen in all of these different organisations Delaney was talking about what happens within one thing that's already established what we had was six or eight different partner organisations we had to go okay how do we bring them all on this journey so we set up a steering committee that was reaching across those interested partners and also a technical reference group Tamara Hooper's up the back there who is away of Tamara Tamara led a lot of this work for South Australia and as a result of having that steering committee and technical reference group we were able to start to increase all the interactions with Hesanda as I've already mentioned SAMRI were part of that initial project and then Flinders University and I think there's some of the Flinders people online if they're not here in the room we were able to also work really hard with their systems to try and say how do we Hesanderise our university you know and it's not without challenge we actually had is that a word Hesanderise it's not without challenge because we actually had to work with the you know the different people on the steering committee and also on the technical group but we then got to a ceiling where we went we actually need major organisational support if we're going to have this taken on board by Flinders so up the ladder we went right to the top of the university and then had to come back down to get that level of support so I don't think we really understood that we needed this culture change we needed leadership we needed management support we needed technical support we needed clinical trials teams of course but we needed all this other stuff through the organisation to be on board for this to actually start to work and as a result of that and thanks to the Flinders crew that are here and online we did get some trials put into the catalogue and we got over the line but I wanted to just let you know that it's actually a culture change process and it's an education process and it's actually bringing all these people on the journey and without the actual platform to demonstrate it so now that we've got the platform that we can demonstrate the value proposition is much clearer but leading up to this day we've been doing this with kind of like it's going to be really good you're all going to really you know be different from this but what is it so that's been a journey we've been on we're now really well positioned because our other partners have been on those steering committees on those technical reference groups and they are now positioned to step into the space and that's the work that we have ahead of us in the next six months and thank goodness that we actually have staff capacity to actually help do that because without that coordinating capacity these projects are really hard to deliver on but we've really been happy to do it so it's important to recognize that each of the partner organizations are different and their pathway to being involved is different and that the coordinating role is critical we need to be really clear of the benefits to all parties the technical requirements and the level of cultural change that is needed and that's whether you're the clinical trialist the library staff or the tech staff I wanted to thank all those who've been supporters and some are here in the audience and some are online so all of those people that have been part of this journey it's been fabulous I also wanted to thank Reese and Kristen who've been terrific in bringing everything together and always on the end of the phone to have a chat it's been a great project we still have a ways to go hand on heart we still have a ways to go but we're on the journey and we're really looking forward to what it can make for South Australia but importantly it's how we collaborate with the other nodes which has really got us to a place we would never have been otherwise the discussions that they have the operational staff having all the time about how we advance this so our job will be made much easier as we now that we can clearly demonstrate the value and the benefits that are going to be able to be reached and we look forward to this so thanks to the Hassan team thanks to all the other nodes for your effort the processes we've put in place the collaboration and also the camaraderie because that sharing has really been something that I don't think we expected when we first put that application in three years ago so finally congratulations to you guys and congratulations to all of us we're really happy to be on this journey but we're on a journey thank you now I think my job is to yes I should have said the same about mine Julien but to introduce Professor Julien Elliott Julien is the Director and Founding Chair of the Australian Living Evidence Consortium and Founding Director of the Australian National COVID-19 Clinical Evidence Task Force which are both based at the Cochrane Australia within Monash University of Public Health and Preventative Medicine where he is also the Professor in Evidence Synthesis is that enough alright come on up Julien thank you thanks Wendy thanks everyone thanks to Adrian and Kristin and everyone else for inviting me to speak I've been involved for a few years in this journey and I must say as everyone else has mentioned it's been a fantastic journey to get to the starting line it's a great team and my first reflection would just be that I think in trying to change scientific ecosystems there's always this interplay between infrastructure, culture and policy and I think Cassandra up to this point has just done a great job at kind of moving each of those forward they're always in interplay and you always need to be moving one forward and then the others kind of catching up slightly but that kind of triangulation between those kind of three kind of pillars of work to really change the way that the research ecosystem works in health and around health data in Australia I think has just again been magnificent effort over the last few years and I think importantly you can feel the energy from different people across the country and that's the thing I think it can't of course be sitting in one organisation it can't be just a small limited number of individuals this really has to be a whole kind of movement, a whole journey across health research across Australia and I think again you've I think ARTC and working with the NOVES and others have really set up the conditions extremely well for that to be a really solid foundation going forward so my job's to talk a little bit about the why like you've heard about all the work incredible effort over the last few years so why do we do this what are we trying to achieve to me I think just to kind of step up a level when you think about it I think it really goes to the nature of science essentially what we're saying here is that science is an empirical undertaking, science is about generating, is running experiments and generating data and assertions based on that data and essentially what we're saying here is that the researcher themselves has particular ideas, hypotheses that they're investigating through those trials through those experiments but others may have other ideas that there is interesting perspectives there's interesting uses of the data generated through an experiment that might be driven by or discovered, uncovered by others across the world and I think that is that is how science works and so by making the outputs of research studies more widely available we're just unlocking that potential to a much much kind of broader community of researchers and so when we think about the use I would say in general we can't predict the limit to the use of those data there is no limit to the imagination of others and the uses that they might put those data together and so by, you know, as a kind of fundamental principle when making these data available we're really unleashing that potential so that of course is extremely exciting very specifically the work we do at Cochran Australia and many of our partners working on evidence synthesis and guideline development you know what we're about is really trying to understand the body of research and then use that to shape practice and policy and we try to bring the most rigorous approach as possible to that we're essentially custodians of research outputs we want to take very good care of that research output and ensure that it is, you know, we're creating very high fidelity, high quality signals that are then being fed into our healthcare system and into policy making so to do that what do we do currently predominantly we work off a PDF document we have research articles that we, of course search for, discover extract the data from, appraise the quality, etc to create our kind of assets it's part of that value chain into improving healthcare of course that is not an incredibly rich source of data it's unstructured, it's summary data it's of course incredibly valuable we could do a lot more if we had more so, of while that whole world that we work in evidence synthesis, guideline development I think we'll predominantly use that kind of summary data out of research articles for some time to come there is a shift happening globally towards greater availability of primary research data and of course that provides enormous value for us there's many things that we can't do with the limited summary data that we can do if somebody through a consortium or any other sort of research has access to that underlying primary data and then enables the combination of that data to essentially discover new insights so it could be that just through various kind of human processes the way that trials have been reported in different articles just doesn't line up and that creates a lot of difficulty for us if we get access to the underlying data it means we can combine the data much more readily or it could be that we increase the power such that we can get much much clear idea about subgroup effects which is truly a kind of step towards personalised medicine, you know, beyond the hype actual step towards personalised medicine, being able to combine the data to look at those subgroup effects so it's incredibly powerful and very interesting for us and I think our community will be very well engaged in the kind of infrastructure and the data that you're making available second point I wanted to make was just that this is a global movement there are similar sort of repositories that have been established around the world and so I think for Australia not to do this would be an incredible mistake I mean we would essentially just miss the train this is the way that not only health research but research in general is moving there's been a lot of movement in this in the US, in the EU and beyond and you know for us to not take this opportunity and really move ahead I think would just put us further and further behind and of course in saying that it's not just the infrastructure it's everything else that we've been talking about it's the community it's the policy change it's ethics and consent forms and it's essentially then shifting that culture it's a long time so it's really important that we start this journey now and really take the Australian research community on that journey so I think we've got a lot to contribute both here in Australia through this work but then also just a note that this will contribute to a kind of global movement as well and the increasingly the ability of researchers to tap into data from different repositories around the world and so the final point I would make really is just from my previous life running a clinical trials unit and running many clinical trials is I think a number of people have touched on this today it's really that ultimately those data have been generated by people in the Australian public who've put themselves at risk through the participation in clinical trials and again I've consented hundreds of patients I know when you're sitting down talking to someone about the entry into a clinical trial it is about risk of course many potential benefits but those benefits often are unknown and so it's about also that understanding that entering that clinical trial I am taking risks and so in doing that if we're asking the Australian public to do that in order to kind of power our research endeavours then it's incumbent upon us to really make the most value out of that contribution so I think ultimately that's another important aspect of really what Cassandra is about it's saying that we really value those contributions we understand not only the risk but also the time and effort and other disruptions that particular clinical trial participation incurs and we value that and we really honour that and so therefore we will make possible the most the largest possible benefit from that participation so thank you all again I think it's been a magnificent ever over the last few years and as a number of people have said this is only just the start but I think very exciting start for this programme, thank you okay so thank you to all our speakers as we close out the event where are we going from here so over the coming months and over the coming years as Adrian said we're going to be doing ARDC is going to be doing a lot more investment work in the health research sector so there'll be ongoing enhancements to health data Australia great to hear after three and a half years work people saying this is just the start doesn't necessarily feel like that to me but we will be continuing to improve the platform we'll be looking to integrate new technologies for example how do we integrate secure access platforms so that once you've been given access to data that you have a secure place to work on that data we're going to be looking for opportunities to grow the Cassandra network and we're going to be expanding beyond clinical trials into other research areas actually that starts next week so if you haven't already you're involved in cohort studies or clinical registries we start consultations on that next week to begin again and we'll be doing a whole lot of outreach and training so that brings us to the end of today's event if you'd like to learn more or get involved please contact ARDC as we like to say click like and subscribe if you'd like to start contributing to health data Australia we can put you in touch with our node network and before we go special thank you to our ARDC comms team for supporting this event very special thank you to our speakers very special thank you to Tamara Hooper who's hiding up the back who put all the hard work into pulling this launch together thank you everyone for joining us today