 Good afternoon everyone although I'm here in Perth and it's still morning here so nice to talk with you all. I want to just quickly tell you a little bit about what we're doing here in Western Australia and of course you know across the country wherever the opportunity presents itself. As Kate said I run a consumer and community involvement program across all health health research organisations, universities, tertiary hospitals in WA and our program was established originally in 1998 at the University of Western Australia and then a couple of years later at the Telethon Kids Institute particularly in response to community concerns about the link data capability that was being established in Western Australia in the mid 90s and then you know people were concerned about research being done without consent and people didn't know so the university decided with great foresight I should think to put in a consumer advocate a day a week and that's now gone where we had one person working one day a week. I started in 2004 and we now as a result of funding in our Lottery West here in WA we have a team of 10 people working to support consumer and community involvement so the whole aim of our program is to support the community voice in decision-making about health research priorities policies and practice. Now a lot of work that we've done over the 15 years that I've been here is involved research that's used link data so then a lot of conversations a lot of concerns and I'm really pleased to say a great shifting of the landscape. So the services that we provide to consumers and to researchers is we provide advocacy and support for involvement with community links and evidence base and the big thing that we do is offer teaching and training for researchers and community members. We've got a network of over 1800 members and I think probably about 1500 of those are consumers and community members that are involved in having a say in research. We've got a website it's called involving people in research and I would suggest perhaps you might like to have a look at that after this. So in relation to the changing landscape that I mentioned between 1998 and 2005 when people talked about link data research they talked about things like this is Big Brother in action people don't know their information is collected and research is conducted people aren't told about the results the data could be hacked WA public is not informed about data linkage and so on. There was a lot of concern when I first started and I'd actually worked in health previously for about 15 years prior to coming into this job and I worked as a consumer advocate and I had never heard that we were establishing a link data capability so you know people were a bit nervous about it but I'm pleased to say through a whole range of activities I've really seen a change in attitude and in 2015 and 16 we went back to people who raised those concerns about their you know brother and their privacy etc and we asked them did they still have the same concerns and a couple of people and I'm talking you know I think we I went back to about 30 people who were originally involved in 2000 and 2004 and a couple of people said you know things like if a researcher uses our data you know he or she is under a moral obligation to help that data improve our lives researchers are using link data and still never talk to a patient a care or an actual actual human being and we're not sure data linkage processes meets the gold standards of transparency and accountability so there were a couple of people who still were a bit nervous about it but the bulk of people that we talked about had really changed their attitude having been involved and in a whole lot of awareness raising activities and you know said that things like health data has proven to be secure from health backing from hacking to date people are very relaxed about sharing intimate data on things like facebook and snapchat and things so what's the problem why don't we use the information that we have to drive good policy without you know and stop politicians and people with vested interests hijacking the debate and hiding behind the privacy issues and why aren't governments and this was the biggest thing that government collect data you know and a range of things and although my experience is all in health there's lots and lots of data collected and people felt that governments have got a real responsibility to use that data to make a difference to people's lives so I suppose basically what I've seen is the big shift from you know privacy concerns right across the board to saying you know what we want now is the data to be used and good governance is about what will ensure that people's privacy is protected so I just want to quickly run through some of the things that we've been doing as I said we run training workshops and approximately 400 community members have attended training workshops that always include a topic on link data capabilities in WA and I have to say I have never had anyone say after attending one of those training workshops that they're still worried about you know the the capability of using link data and in actual fact people very much see that using anonymized data is privacy protecting so we have numerous community members currently serving on projects that use link data in a range of activities reference groups and I think you know currently we've got about a 410 consumer and community members sitting on research committees and decision-making committees across WA and a lot of those projects use link data research community members have that input into submissions around the the use of link data for research for both state and federal government submissions and you know always that has been very positive and then just very recently we brought together 25 senior consumer and community members and reps to be involved in priority setting for future research using link data and that will be looking at social determinants of health across the life course preterm to death so again you know we've seen really positive changes once people have an understanding of what it's all about I just like to finish off with really saying that what I think is a greater community awareness of the benefits of data sharing I think not enough is done to explain to people how you know the community can benefit from the use of big data there needs to be a lot more community dialogue around the secondary use of data and particularly with my health records coming on on board I think that that's something that people have a tiny bit of nervousness about and I think researchers need to work together in partnership with community members to address these concerns and I of course would like to see greater involvement of consumer and community members in all research and we're talking about the decision-making about what is research how it's conducted and the translation of those findings into policy and practice just lastly I'd just like to leave you this I think this quote is fantastic and this is from one of the people that was quite nervous in the beginning and she really came around to see the benefits of it but her thing was that she said I know the data is anonymized but I want you the researcher to remember that it's my story it's about me my life my family researchers should honour that by making information available to everyone about what the data is used for and what is found and I just think that that says it all use the data but actually do the right thing and tell me what you're using it for and what you're going to find thanks a lot