 I'd like to introduce our two speakers who we have online today, we've got Associate Professor Lorraine Smith and she's a research psychologist at the University of Sydney. Her research interests are patient experiences of long-term conditions, self-management and goal setting. And we've got Anne McKenzie who's worked as a health consumer advocate since 1995 and is now the head of the Western Australian Consumer and Community Health Research Network. Her task is to implement a statewide consumer and community involvement program in research organizations across the Western Australian Health Translation Network. She serves as a consumer representative for Consumers Health Forum of Australia and is a former chair of Health Consumers Council Western Australia and serves on key state and national health committees in 2015 and was appointed to the Order of Australia for service in the area of health consumer advocacy. So firstly I'd like to hand over now to Lorraine Smith who's going to be speaking to us about Patient Consent and Health Talk Australia. Okay thanks very much Kate and good afternoon everyone it's lovely to be with you and I understand I have about 10 minutes to take you through a bit of a tour of consent issues that we have been have had to organize over the last 10 or so years when it comes to getting consent for video and audio recorded interviews that we conduct as as part of our research. But first of all I'd just like to take you through some a couple of websites but before I do that I'll just tell you briefly about this sort of work that I do and then I want to give you a quick tour of a couple of websites so you can have a look at the the sorts of video and audio recordings that we provide to the public and then I want to take you through our consent and copyright forms which I hope will sort of give you a little more background about the sorts of the types of consent that we we get from our our participants. So the sort of work part some of the work that I've been doing over the last 10 or 15 years is gathering research through qualitative in-depth interviews with participants around their personal experiences of long-term conditions and this is part of a worldwide consortium of researchers. So I'm just I'm just just to recap I'm I'm talking about the other sort of research work that we've done over the last 10 or 15 years where we interview people about their personal experiences of long-term conditions and these are rigorous systematic qualitative research studies which as and they're the same as any any qualitative research study that you would do. The difference is that we use these data and analyze the data that we gather to then make publicly available topic summaries which would be if you're a qualitative researcher would be based along the lines of themes thematic analysis and these topic summaries are illustrated with video clips from the video recorded interviews but if people don't consent to video clips we they do consent to audio or even just written transcripts. So I wanted to to give you a very quick tour through a couple of our of websites so the first one that I'd like to show is the Health Talk Australia site what I'd like to show you is yes this is the Health Talk Australia site so on this site you can see that it has a number of modules I'm not sure that I can I've actually got control over that we're just scrolling down to show people we've done different a number of different research projects if you click on the aging just back up a bit there's the aging module on the right hand side if we click on that you will see down the left hand side of that screen there are a number of under overview there are a number of different topic summaries and we if you click on one of those then so if we click on say the business of living and in there there's a whole lot of different so you could click on say interests and activities and that should bring up scrolling down a little there is that there's a series of video clips that you can click on that will that are drawn from the the research that's been conducted into these different conditions if we just scroll back up so that you'll see these two clips that you could click on have been anonymized these people didn't want their the video to be shown but they're happy for the audio to be played so we still make the their these people's stories available but we do it at the level in which they are comfortable if I could now show you the healthtalk.org the UK website I just wanted to show you that because that was they have done over 100 modules and it has a similar setup whereby you can find a particular condition it might be anything from arthritis to to cancers all sorts of different conditions and you can again on the left hand panel find a topic summary relating to that particular condition which is based on the thematic research that we've done then you can you can click through there and you can find our video and audio recorded clips so in the interest of time I'd love to be able to take you for more of a tour but I know that we're up against time here so what I'd like to do now is go back to showing you the consent and copyright forms the consent form and you should be able to open this and have a look at this yourself because I've made these available please note they're copyrighted the consent form is a standard consent form as you would have for any ethics ethics approved study and it it outlines the usual ethics related issues around giving consent that the participants can also tick a box to indicate if they give consent for video or audio recorded sections of the of the interview so the consent form just as you will see it's very standard that people consent to understanding the purpose of the study they've read the participant information statement they've had any questions answered they can withdraw from the study at any time that the personal information is collected over the course of the project is stored securely that they are happy to be they can tick a box to show they're happy to be identified or they don't want to be identified and that they want their identity to be anonymous but they wish to have the transcript of their interview identified under a pseudonym which they can then write in and that they can send to audio video and or reviewing transcripts so that's just the standard consent form with the copyright form this is the the more important one I guess so the more relevant one for our our listeners today so this is a copyright transfer form and I'll just take you very quickly through this so it's about future use of my interview and I intend that my interview will be available to the health talk Australia website that the study investigators have approved it for use in teaching broadcasting research the making of audio visual resources and other publications it with this particular form it's also available for on the centre of research and excellence in severe asthma website and that it will be the material may be shared with academics broadcasters developers of training courses website developers you can see that it's quite comprehensive on the they can also remove their or retract their copyright they can they can if I decide that I no longer want my interview to be used it will be removed and but I'd like to stress that this very very rarely happens in the thousands of interviews that have been done using this method around the world there would only be a handful of people who change their minds later on and we will wherever possible we can definitely remove it from the website but if if transcript data has been used in publications of course we can't remove that the final thing I would like to say is that people do give consent for video and audio recordings they willingly do that and they usually say it's because they hope that it might help other people who are in a similar situation to their own and once we show people how the websites work for those of them who are a little unsure they will most of the time they will can then consent to having their interview video recorded a small percentage don't consent but then they do consent to the audio and the transcription thank you very much Lorraine we are going to now pass over to Anne 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 organized health research organizations 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 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 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 it's 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 sort of 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 in 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 big brother and their privacy etc and we 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 of 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 in 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 a 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 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 of 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 with 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 honor that by making information available to everyone about what the data is useful 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 thank you very much Anne and that's a really good point to end on it's fabulous so I'm just going to quickly show a few slides from some research that I've been looking at about people's attitudes to the secondary use of health data so research Australia came out with this report earlier this year and they're a national alliance representing the health and medical research sector and this they do an annual survey about health and medical research and this year it showed that 93% of their respondents supported the use of health record data for research purposes but I do note that this survey didn't specify whether that data was identifiable or not to the people who were in that survey so a study commissioned by the welcome trust which is the UK's version of NHMRC asked respondents how willing they would be to allow their medical records to be used in a research study if the information excluded their name date of birth address and contact details and in 2015 the proportion of very willing or fairly willing was 77% and in 2012 that was 60% so that shows an increase in willingness as Anne was talking about in New South Wales the information and private commission report from this year found 58% of respondents agreed that they were willing for their identifiable health information to be used for research purposes so remember the first one I discussed that didn't specify whether it was identifiable or not this one specified identifiable and I wonder if it would be higher if they had specified non identifiable like the UK one so there's a really great website from the UK it's owned by the welcome trust and they have a collection of information of studies about patient views on health data they also have things like information about words to use when talking to patients about data and how to engage with the public and patients about issues around use of patient data I really recommend this website it's a very good one to explore and Anne also touched on this in her talk the my health record is going to be compulsory for all Australians from next year we're all going to get a my health record and currently the government for the next month is running a consultation on secondary use of data and developing a framework for the use of this so if anyone is interested now it's the time to be able to put into that consultation there's online consultation and there's also some workshops that are happening around the country so have a look at that if you're interested in that there's a few references here don't worry about writing them down the slides are going to be available on the Anne's website after this but that's just for further interest for people so I just wanted to quickly sort of sum up what I felt the takeaway messages that we were speaking about today are that there is support from people about using their medical data for research but be aware that it's not 100% and as Anne said it's really important to engage with the people who you're working with and with consumers appropriate consent is important and as Lorraine touched on levels of consent for data sharing may be an option for your research projects thank you very much for your time today Anne and Lorraine and everyone who has called in to watch our webinar we've got one more health and medical webinar about the Australian Health Thesaurus and data linkage so hopefully we'll see people there