Snippet - Health & Medical #4 - Patient consent and HealthTalk Australia
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Smith, Lorraine
Assoc Prof Lorraine Smith, Patient consent and HealthTalk Australia, University of Sydney is a research-based collection of personal experiences of health conditions in social context, captured on film, audio and in text. The interviews are used to produce innovative, publicly available health experience targeted online resources.
 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 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 and 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 provide to the public. And 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. So some of the work that I've been doing over the last 10 or 15 years is a 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 to recap, 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 they're the same as any qualitative research study that you would do. The difference is that we use these data and analyse 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 and if people don't consent to video clips they do consent to audio or even just written transcripts. So 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. So 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 scrolling down to show people. We've done 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 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 a series of video clips that you can click on that are drawn from the research that's been conducted into 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 are happy for the audio to be played. So we still make these people 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 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 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 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 are 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 are copyrighted. The consent form is a standard consent form as you would have for any ethics approved study and it outlines the usual ethics related issues around giving consent that participants can also tick a box to indicate if they give consent for video or audio recorded sections of the interview. So the consent form, just as you will see, is 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. The personal information is collected over the course of the project, is stored securely. 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 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 more important one I guess, the more relevant one for 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 HealthTalk Australia website, that the study investigators have approved it for use in teaching, broadcasting, research, the making of audiovisual resources and other publications. With this particular form, it's also available for on the Centre of Research and Excellence in Severe Asthma website and that the material may be shared with academics, broadcasters, developers of training courses, website developers. You can see that 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 and 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. 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, 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.
 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 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 and 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 provide to the public. And 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. So some of the work that I've been doing over  the last 10 or 15 years is a 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 to recap, 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 they're the same as any qualitative research  study that you would do. The difference is that we use these data and analyse 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  and if people don't consent to video clips they do consent to audio or even just written  transcripts. So 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. So 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 scrolling down to show people. We've done 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  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 a series of video clips  that you can click on that are drawn from the research that's been conducted into 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 are happy for the audio to be played. So we still make these people 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 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 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 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 are 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 are copyrighted. The consent form is a standard consent form as you would  have for any ethics approved study and it outlines the usual ethics related issues around giving  consent that participants can also tick a box to indicate if they give consent for video  or audio recorded sections of the interview. So the consent form, just as you will see,  is 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. The personal information is collected over the course of the project,  is stored securely. 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 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 more important one I guess,  the more relevant one for 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 HealthTalk Australia website, that  the study investigators have approved it for use in teaching, broadcasting, research, the  making of audiovisual resources and other publications. With this particular form, it's  also available for on the Centre of Research and Excellence in Severe Asthma website and  that the material may be shared with academics, broadcasters, developers of training courses,  website developers. You can see that 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 and 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. 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, 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.
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