Transcript from the November 1st 2017 webinar: Health & Medical Data Short Bites #4: Patient views on data sharing Facilitated by Kate LeMay. Speakers: Lorraine Smith - Health Talk Australia, and Anne McKenzie - Western Australian Consumer and community health research network The recording associated with this transcript can be found on the ANDS website: http://www.ands.org.au/working-with-data/sensitive-data/medical-and-health/webinars-health-and-medical

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Health & Medical Data Short Bites #4: Patient views on data sharing Webinar
1 November 2017
Video and slides available from the ANDS website
START OF TRANSCRIPT
Kate LeMay: 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. We’ve got Anne McKenzie, who has worked as a health
consumer advocate since 1995 and is now the head of the Western
Australian Consumer and Community Health Research Network. Her
takes is to implement a state-wide consumer and community
involvement program, in research organisations across the Western
Australian health translation network.
She serves as a consumer representative for consumer’s 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, Anne was appointed to the Order of Australia
for service in the area of health consumer advocacy. Firstly, I'd like to
hand over now, to Lorraine Smith, who is going to be speaking to us,
about patient consent and Health Talk Australia.
Lorraine Smith: 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 had to

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organise over the last 10 or so years. When it comes to getting
consent for video and audio recorded interviews, that we conduct as
part of our research.
But first of all, I'd just like to take you through a couple of websites, but
before I do that, I'll just tell you briefly about this sort of work that I do.
Then I want to give you a quick tour of a couple of websites, so you
can have a look at the sorts of video and audio recordings that we
provided to the public. Then I want to take you through our consent
and copyright forms, which I hope will give you a little more
background about the sorts of - the types of consent that we get from
our participants.
Some of the work that I've been doing over the last 10-15 years, is
gathering research through qualitative in depth interviews, with
participants, around their personal experiences of long term
conditions. This is part of a worldwide consortium of researchers, so
I'm just to recap, I'm talking about the sort of research work we’ve
done over the last 10-15 years. Where we interview people about
their personal experiences of long term conditions, and these are
rigorous, systematic, qualitative, research studies. They're the same
as any qualitative research study that you would do.
The difference is that we use this data, and analyse the data that we
gather, to then make publically available topic summaries, which
would be, if you’re a qualitative researcher, would be based along the
lines of themes, thematic analysis. These topic summaries are
illustrated with video clips from the video recorded interviews. If
people don’t consent to video clips, they do consent to audio, or even
just written transcripts.
I wanted to give you a very quick tour through a couple of our
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. On this site, you can see that it has a number of
modules, I'm not sure that I've actually got control over that. Just

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scrolling down to show people. We’ve done a number of different
research projects. If you click on the ageing, just back up a bit, there’s
the ageing 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. If you click on one of those, then so if we
click on say the business of living. 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’s a series of video clips
that you can click on, that are drawn from the research that’s been
conducted in to these different conditions.
If we just scroll back up, so you’ll see these two clips that you could
click on, have been anonymised. These people didn’t want the video
to be shown, but they were happy for the audio to be played. We still
make these people’s stories available, but we do it at the level in
which they are comfortable. If I could now show you the Health Talk
dot org, the UK website. I just wanted to show you that, because that
was - they have done over 100 modules. It has a similar set up,
whereby you can find a particular condition, it might be anything from
arthritis to cancers, all sorts of different conditions.
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 click through there and you can find
video and audio recorded clips. 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. 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 approved study. It outlines the usual
ethics related issues around giving consent, participants can also tick

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a box to indicate if they give consent for video or audio recorded
sections of the interview.
The consent form just as you will see, it’s very standard, 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. But the
personal information is collected over the course of the project, it’s
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 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 it, and that they consent to audio, video and or
reviewing transcripts.
That’s just the standard consent form. With the copyright form, this is
the more important one I guess, the more relevant one for our
listeners today. This is a copyright form and I'll just take you very
quickly through this. 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. With this particular form, it’s also available on the
Centre of Research and Excellence in Severe Asthma website.
The material may be shared with academics, broadcasters,
developers of training courses, website developers. You can see
there, it’s quite comprehensive. They can also remove or retract their
copyright, if I decide that I no longer want my interview to be used, it
will be removed. 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. We will, wherever possible,
we can definitely remove it from the website. But if transcript data has
been used in publications, of course we can’t remove that.

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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. 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 then consent to having their interview or
video recorded.
A small percentage don’t consent, but then they do consent to the
audio and the transcription.
Kate LeMay: Thank you very much Lorraine, we are going to now pass over to
Anne.
Anne McKenzie: 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 across the country, wherever the opportunity presents itself.
As Kate said, I run a consumer and community involvement program,
across all health research organisations, universities, tertiary hospitals
in WA.
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 linked data capability that was being established in Western
Australia in the mid ‘90s. Then people were concerned about
research being done without consent and people didn’t know.
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.
The whole aim of our program, is to support the community voice in
decision making about health research, priorities, policies and
practice.

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Now a lot of work that we’ve done over the 15 years that I've been
here, has involved research, that’s used linked data. There’s been a
lot of conversations, a lot of concerns, and I'm really pleased to say a
great shifting of the landscape. The services that we provide to
consumers and to researchers is we provide advocacy and support
through involvement with community links and evidence based. 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.
In relation to the changing landscape that I mentioned. 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 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. I'd actually worked in health previously for about
15 years prior to coming in to this job, and I worked the consumer
advocate. I had never heard that we were establishing a linked data
capability.
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. In 2015
and 2016, we went back to people who raised those concerns. About
their big brother and their privacy et cetera. We asked them, did they
still have the same concerns? A couple of people, and I'm talking, I
think I went back to about 30 people who were originally involved in
2000 and 2004. A couple of people said, things like the researcher
uses our data, he or she is under a moral obligation to help that data
improve our lives.

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Researchers are using linked data and still never talked to a patient, a
carer or an actual human being. We're not sure data linkage
processes meets the gold standard of transparency and
accountability. 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 in a whole lot of
awareness raising activities.
Said things like health data is proven to be secure 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? Stop
politicians and people with vested interests, hijacking the debate and
hiding behind the privacy issues. Why aren’t government - and this
was the biggest thing, that government collect data, on a range of
things. 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.
I suppose basically what I'd seen is a big shift from privacy concerns,
right across the board to saying, what we want now is the data to be
used, and good governance is about what - will ensure that people’s
privacy is protected. 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
WA. I have to say, I have never had anyone say after attending one
of those training workshops, that they’re still worried about the
capability of using linked data.
In actual fact, people very much see that using anonymised data, is
privacy protecting. We have numerous community members currently
serving on projects that use linked data, in a range of activities,
reference groups. I think currently we’ve got a 410 consumer and
community members, sitting on research committees, decision making

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committees, across WA. A lot of those projects use linked data
research.
Community members have had input in to submissions around the
use of linked data for research, for both state and federal government
submissions. Always, that has been very positive. Then just very
recently, we bought together, 25 senior consumer and community
members, and reps. To be involved in priority setting for future
research using linked data. That will be looking at social determinants
of health, across the life course. Preterm, to death. Again, we’ve
seen really positive change, once people have an understanding of
what it’s all about.
I'd 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 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 board. I think that’s something that people
have a tiny bit of nervousness about.
I think researchers need to work together in partnership with
community members to address these concerns. I of course would
like to see greater involvement of consumer and community members
in all research. We’re talking about the decision making about what is
research, how it’s conducted and the translation of those findings in to
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. She really came around to see the benefits of it. But
her thing was that she said, I know the data is anonymised, 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.

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I just think 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 doing to find.
Thanks a lot.
Kate LeMay: Thank you very much Anne, and that’s a really good point to end on,
it’s fabulous. 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. Research Australia came out with this
report earlier this year, and they’re a national alliance representing the
health and medical research sector. They do an annual survey about
health and medical research, and this year it showed that 93 per cent
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. A study
commissioned by the Welcome Trust, which is the UKs version of
MRC. 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. In
2015, the proportion of very willing or fairly willing, was 77 per cent. In
2012, that was 60 per cent, so that shows an increase in willingness
as Anne was talking about.
In New South Wales, the information and privacy commission report
from this year, found that 58 per cent of respondents agreed that they
were willing for their identifiable health information to be used for
research purposes. 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.
There’s a really great website from the UK, its owned by the Welcome
Trust. They have a collection of information of studies, about patient
views on health data reuse. They also have things like information
about words to use when talking to patients about data. How to

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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.
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. If anyone is interested,
now is the time to be able to put in to that consultation. There’s online
consultation and there’s also some workshops that are happening
around the country. 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 ANDS website after this.
But that’s just for further interest for people. I just wanted to quickly
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 it’s not 100 per cent 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.
END OF TRANSCRIPT