Snippet - Health and Medical Short Bites #4 - The importance of having appropriate consent for research studies and consumer’s changing attitudes to health data use for linkage studies

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Snippet - Health and Medical Short Bites #4 - The importance of having appropriate consent for research studies and consumer’s changing attitudes to health data use for linkage studies
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Anne McKenzie AM, Head of the WA Consumer and Community Health Research Network The importance of having appropriate consent for research studies and consumer’s changing attitudes to health data use for linkage studies.
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good afternoon everyone although I'm here in person 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 research organizations universities churches hospitals in Wi and our program was established originally in 1998 at the University of West Australia and then a couple of years later at the telethon kids Institute particularly in response to community concerns about the linked data capability that was being established in West 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 away 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 NWA 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 linked data so then a lot of conversations a lot of concerns and I'm really pleased to say are 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 and the big thing that we do is all for teaching and training for researchers and community members we've got a network of over 1,800 members and I think probably about 1,500 of those 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 Knight between 1998 and 2005 when people talked about linked 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 are told about the results the data could be hacked W a 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 for 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 attitudes 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 went back to about 30 people who are 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 linked 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 is proven to be secure from health dakki from hacking today 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 stock 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 that government collect data you know in a range of things and although in my experience it's all in health there's lots and lots of data collected and people felt the government they've got a real responsibility to 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 linked data capabilities in w.a and I have to say I have never had anyone say after attending one of those training workshops that this you're worried about you know the the capability of using linked 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 project that Usenet data in a range of activities reference groups and I think you know currently with what about a 410 consumer and community members sitting on research committees a decision-making committees across WI and a lot of those projects use linked data research community members have that input into submissions around them 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've we brought together 25 senior consumer and community members and reps to be involved in priority setting for future research using linked 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 its conducted and the translation of those findings into policy and practice just lastly I 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 theme was that she said I know the donor is of anonymize 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


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