Snippet #2 - Systems Supporting the Ethical Management of Research Data
Allen, Gary
Gary Allan presents the systems in use (or in development) at Griffith University to support the management and use of research data ethically. Ethical clearance is a critical step in the research data life-cycle to ensure that data collected and used during the course of research meets the expected ethical standard under the terms of the Australian Code for the Responsible Conduct of Research and the National Statement on Ethical Conduct in Human Research. Systems that support ethical clearance and continual monitoring of data management and usage are thus critical to maintaining the ethical standard and integrity of research within an institution. Moreover, some research data can have long lasting social, cultural, or scientific value well beyond the completion of a research project. Keeping accurate records of the ethical and legal constraints as well as the permissions around research data are thus necessary steps to ensure that the value of data is preserved.
 So although I serve on a few committees with nominees from the ARC and the Interim RC and Universities of Australia, I'm not speaking on behalf of those August bodies. It's only opinions I express are definitely my own. So what I do to start off with is really talking about sort of the brass tacks when we're thinking about data. So generally we're thinking about the way in which is access collected or generated. And that data can be in a variety of forms. So it might be documents or survey responses. It might be test results or some sort of audiovisual files. It could be a range of information. When we're talking about personal information, that might be individually identifiable. These are the terms that the national statement uses. So it can be individually identifiable or re-identifiable. So we're talking about something that may be as coded where the researchers have got access to the code key and then non-identifiable. So that might be coded by an agency that's supplying it to the researchers but the researchers don't actually have the code key. Or all of the identifying information has been stripped out. So it's anonymous. And I think it's worthwhile pausing in terms of sensitive personal information because information is not sensitive personal just because it's humiliating or embarrassing or might expose people to risk. Because the Privacy Act actually defines very clearly what's considered sensitive information. The Privacy Act actually closely defines what's considered to be personal information. And so when we're asking participants to give their consent, that consent might be specified for a particular project or a particular use, a particular group of researchers, or it might be extended in terms of future research by that team that's in a related area, or it might be unspecified, it might be a general consent for the research use that they were information. And we need to think about information both in terms of when it was accessed, collected or generated. We need to think about then during the course of the research where it's being stored or how it's being communicated between collaborating with the researchers and then after the selling. And then finally in terms of how it's going to be disclosed or shared whether or not it's going to be added to a repository or bank in some way, if it isn't actually going to be a feature of the output for research. So a single project actually might involve sort of multiples of all of those settings in terms of things like the form of the data, whether or not their personal information, the degree of which they're identified, and then things like the types of consent that's obtained. So we might actually have multiple settings for different data across a project. But I think it's important to reiterate to everybody that just because research involves ethical sensitivities or risks, it doesn't mean that research is compromised or it's a problem. Quite often the fact that there's ethical challenges with research is actually indicated that it's perhaps very important that it's going to make some sort of social or broader contribution. And so we should be embracing when the research involves those challenges, not trying to avoid them. So the fact that there are ethical concerns, that's not a reason to say that the research isn't valid or to say that we shouldn't be accessing or sharing of data. It just might be means that we require a bit more precautions or arrangements in place. And for individual researchers, you need to be prepared for the fact that the group we've been revealing in research might not actually be that familiar with your research design or the topic area. So it may well be that you need to sort of engage with the reviewers to explain the reasons for the research, explain what the benefits are, explain about the data sharing and be ready to justify your approach and take an educative role in terms of those reviewers. And I'm not talking about it being confrontational, although it's been known to happen. But there should be that sort of engaged discussion between researchers and reviewers. But with some careful preparation, it's possible to avoid delays or problems with the research ethics review of a piece of work in the sharing of data. So when you're thinking about sort of research ethics and research integrity of data, there's a few things to think very quickly. So the guidance in terms of human research ethics can be found in the national statement and in terms of research integrity, it can be found in the Australian Code. And both of those documents have got content on a particular point when we're talking about this issue. So matters like privacy, consent and risk, you'll find across those two documents. And currently there's reviews underway in terms of both the national statement and the Australian Code. And I should stress that I'm involved in the review of the national statement. So there are updates going on and there's public consultations coming. So as a group it's important you keep out, you're out for that and you have input as the reviews are going on. For those of you that may be a base outside of Australia or during a search outside of Australia, there's comparable documents in other jurisdictions. And in fact over the course of the last decade, there's increasingly research ethics and research integrity frameworks in sort of continental Europe, in Africa, South East Asia and beyond. So you may need to actually refer to those documents in the other jurisdictions. So in terms of the frameworks, a couple of implications. One is the collection of the data and then the use, and maybe sharing the data, is more likely to be considered human research, particularly if it's identified information and so require some research ethics review. And it may well imply to sort of existing data sources, sort of material from the web or social media. And hopefully your institutional frameworks give you some advice in terms of whether or not it's considered human research. And so then because of that you need to be thinking about the consent that you obtain and whether or not it's specified, extended or unspecified, and what that consent allows for. You need to think about the degree to which that information is identifiable. So is it directly identified in terms of individuals? Is it possible that individuals could be identified by inference, including what, within social media there's, sorry, social science research increasingly, there's reflection on what we call internal identification. So if for instance you were talking about a group of recent ethics bureaucrats and you said that you spoke to a bureaucrat that gets around in the wheelchair and is in his forties and is losing his hair, you may not have said my name, but people that work in the sphere will know that you're talking about me. And sometimes the internal identification can be more problematic than sort of a general population identification. So we need to be reflecting in terms of are there risks associated with the degree to which people could be identified? Are there risks associated with the release of that information? I think it's important to recognize that there will be groups of people that won't be concerned if they're identified. It may well be that there's a situation that is talking about people that are relatively senior, that will be very able to look after their interests when they're concerned, but that's likely to be a project specific reflection. And so I tell you that there will be some participants who will demand to be identified. If you're talking about sort of action based on a particular issue, maybe a condition of them providing their information is that they will be identified. So that's something that you need to accommodate. So when you're seeking consent for the research use of information, there's a few things that you need to really cover. So there are things you need to include. So thinking ahead in terms of the sharing, banking and research, re-use of that information. Is it going to be headed to a repository? And talking about the degree to which it's going to be identifiable and really anticipating in terms of, and whether or not in terms of consent, the degree of specificity about how that information might be used for other research or shared for other purposes. Being careful not to embed research consent into other consent. So if you're doing research in an area like language support for international students, if you don't want to embed research consent into the process for a person volunteering to receive some support, making sure that you provide details of a withdrawal mechanism. So participants know what they need to do to withdraw their consent later so that the data could be removed from the banking or repository. And then thinking about the mechanism by which other researchers will access that data. So will it be that they're accessing it in an identified form or what's the constituents role in terms of that access. And really in terms of whether or not the other researchers will see it in an identified form, identifiable or not identifiable. Obviously it's really important to make sure that you're keeping good records. So the systems that we're talking about in the workshop today are examples of the ways in which you can record the information. So if you all forgive some charnalists of promotion, but you don't really have any choice because I'm the one with the mic. But along with a couple of colleagues of mine, Colin Thompson, Mark Israel and Martin Tollett from New Zealand, we maintain a couple of free resources for researchers. So one of them is a resource library that includes a variety of documents. And then also there's a research ethics monthly blog. So both of those talk about research ethics and research integrity. I definitely encourage you to drop by and have a look at those resources. Thank you, Gary. Yeah, there's one question. So thank you very much, Gary. We've got 78 connections on the line at the moment. Just to let you, speakers, presenters know, a question of what is the timeframe for the review of the national statement and which body is overseeing the review? Okay, I mean, that's a really good question because first of all, it's important to stress that the review bodies are including people from the ARC, the University of Australia and the NHMRC and various nominees. So there's a real attempt underway to make sure that it's an inclusive approach to speak to the wide gamut of research designs. The action review of the national statement, it's an ongoing rolling review. There's material that's being released progressively, so that's why last year we saw the opt-out approach to recruitment and consent was released as part of that rolling review. The next block of material which I've been involved in hopefully will appear before the end of this year and public consultation will happen well before that. In terms of the Australian Code, I'm not sure because I'm not privy to that conversation, but I think it's close to being ready for public consultation. I guess just to reiterate to the group, get involved in that public consultation, even if you look at it and think you like what's being done, make sure you speak up to express the fact that you're happy with it because otherwise the only voices we hear are the people that aren't happy. So make sure you're involved and you speak up for useful and constructive change. That was excellent. Thank you. The other question is, do you think researchers are better informed about ethical issues related to data management now than they were several years ago, or do the same challenges remain? I mean, once again, that's a really good question. I mean, one of the things, if you're sort of watching the media or if you've got the Google set up, you will have seen in the last – I've just asked a couple of months there was the emotional contagion, social media, I might say fiasco, but problem. And there was also recently the OKCupid one which has sort of highlighted the fact that it's very easy for people to run into trouble. I think that there is a growing awareness, but I think that it's really important that institutions provide resource material to support researchers. I think that we all need to work a lot harder in terms of making sure those resources are available. And I think, you know, I'm not talking about rule books. I'm not talking about a rule book about how to fill out an application form well. I'm talking about things that support the reflective practice of researchers. And hopefully that's something that we'll be seeing more of. But, you know, hey, there's a reciprocal obligation on researchers as well to abound themselves of those resources. Excellent. Thanks very much, Gary. That's all the question – oh, sorry, there's a comment here. Can you comment on data governance and whether you think data governance needs a national approach? What is your vision for this? Before I answer, I just want to reiterate again, I'm not speaking on behalf of the ASCAA and the ASL University of Australia. I mean, I think that there is an argument to have a national reference point. I'm not saying that we need a national standard that we all have to comply with, but I think that there is value to having a resource that's informing our practice. So, you know, I think that that's the space that something's been used for the being done. One of the reasons why the four of us set up the RX Web Resources was to try and encourage some of that conversation between them. Fantastic. Thank you. I'll just clarify that that question came from Dr Weeming Boone at the NHMRC. So maybe a conversation continuing there. Disclamer, disclaimer, disclaimer.
 So although I serve on a few committees with nominees from the ARC and the Interim RC  and Universities of Australia, I'm not speaking on behalf of those August bodies.  It's only opinions I express are definitely my own.  So what I do to start off with is really talking about sort of the brass tacks  when we're thinking about data.  So generally we're thinking about the way in which is access collected or generated.  And that data can be in a variety of forms.  So it might be documents or survey responses.  It might be test results or some sort of audiovisual files.  It could be a range of information.  When we're talking about personal information, that might be individually identifiable.  These are the terms that the national statement uses.  So it can be individually identifiable or re-identifiable.  So we're talking about something that may be as coded where the researchers have got access to the code key  and then non-identifiable.  So that might be coded by an agency that's supplying it to the researchers  but the researchers don't actually have the code key.  Or all of the identifying information has been stripped out.  So it's anonymous.  And I think it's worthwhile pausing in terms of sensitive personal information  because information is not sensitive personal just because it's humiliating or embarrassing  or might expose people to risk.  Because the Privacy Act actually defines very clearly what's considered sensitive information.  The Privacy Act actually closely defines what's considered to be personal information.  And so when we're asking participants to give their consent,  that consent might be specified for a particular project or a particular use,  a particular group of researchers, or it might be extended in terms of future research by that team  that's in a related area, or it might be unspecified,  it might be a general consent for the research use that they were information.  And we need to think about information both in terms of when it was accessed, collected or generated.  We need to think about then during the course of the research where it's being stored  or how it's being communicated between collaborating with the researchers and then after the selling.  And then finally in terms of how it's going to be disclosed or shared  whether or not it's going to be added to a repository or bank in some way,  if it isn't actually going to be a feature of the output for research.  So a single project actually might involve sort of multiples of all of those settings  in terms of things like the form of the data, whether or not their personal information,  the degree of which they're identified, and then things like the types of consent that's obtained.  So we might actually have multiple settings for different data across a project.  But I think it's important to reiterate to everybody that just because research involves  ethical sensitivities or risks, it doesn't mean that research is compromised or it's a problem.  Quite often the fact that there's ethical challenges with research is actually indicated that it's perhaps very important  that it's going to make some sort of social or broader contribution.  And so we should be embracing when the research involves those challenges, not trying to avoid them.  So the fact that there are ethical concerns, that's not a reason to say that the research isn't valid  or to say that we shouldn't be accessing or sharing of data.  It just might be means that we require a bit more precautions or arrangements in place.  And for individual researchers, you need to be prepared for the fact that the group we've been revealing in research  might not actually be that familiar with your research design or the topic area.  So it may well be that you need to sort of engage with the reviewers to explain the reasons for the research,  explain what the benefits are, explain about the data sharing and be ready to justify your approach  and take an educative role in terms of those reviewers.  And I'm not talking about it being confrontational, although it's been known to happen.  But there should be that sort of engaged discussion between researchers and reviewers.  But with some careful preparation, it's possible to avoid delays or problems with the research ethics review  of a piece of work in the sharing of data.  So when you're thinking about sort of research ethics and research integrity of data, there's a few things to think very quickly.  So the guidance in terms of human research ethics can be found in the national statement  and in terms of research integrity, it can be found in the Australian Code.  And both of those documents have got content on a particular point when we're talking about this issue.  So matters like privacy, consent and risk, you'll find across those two documents.  And currently there's reviews underway in terms of both the national statement and the Australian Code.  And I should stress that I'm involved in the review of the national statement.  So there are updates going on and there's public consultations coming.  So as a group it's important you keep out, you're out for that and you have input as the reviews are going on.  For those of you that may be a base outside of Australia or during a search outside of Australia,  there's comparable documents in other jurisdictions.  And in fact over the course of the last decade, there's increasingly research ethics and research integrity  frameworks in sort of continental Europe, in Africa, South East Asia and beyond.  So you may need to actually refer to those documents in the other jurisdictions.  So in terms of the frameworks, a couple of implications.  One is the collection of the data and then the use, and maybe sharing the data,  is more likely to be considered human research, particularly if it's identified information  and so require some research ethics review.  And it may well imply to sort of existing data sources, sort of material from the web or social media.  And hopefully your institutional frameworks give you some advice in terms of whether or not it's considered human research.  And so then because of that you need to be thinking about the consent that you obtain and whether or not it's specified,  extended or unspecified, and what that consent allows for.  You need to think about the degree to which that information is identifiable.  So is it directly identified in terms of individuals?  Is it possible that individuals could be identified by inference, including what,  within social media there's, sorry, social science research increasingly,  there's reflection on what we call internal identification.  So if for instance you were talking about a group of recent ethics bureaucrats and you said that you spoke to a bureaucrat  that gets around in the wheelchair and is in his forties and is losing his hair,  you may not have said my name, but people that work in the sphere will know that you're talking about me.  And sometimes the internal identification can be more problematic than sort of a general population identification.  So we need to be reflecting in terms of are there risks associated with the degree to which people could be identified?  Are there risks associated with the release of that information?  I think it's important to recognize that there will be groups of people that won't be concerned if they're identified.  It may well be that there's a situation that is talking about people that are relatively senior,  that will be very able to look after their interests when they're concerned,  but that's likely to be a project specific reflection.  And so I tell you that there will be some participants who will demand to be identified.  If you're talking about sort of action based on a particular issue, maybe a condition of them providing their information is  that they will be identified. So that's something that you need to accommodate.  So when you're seeking consent for the research use of information, there's a few things that you need to really cover.  So there are things you need to include.  So thinking ahead in terms of the sharing, banking and research, re-use of that information.  Is it going to be headed to a repository?  And talking about the degree to which it's going to be identifiable and really anticipating in terms of,  and whether or not in terms of consent, the degree of specificity about how that information might be used for other research or shared for other purposes.  Being careful not to embed research consent into other consent.  So if you're doing research in an area like language support for international students,  if you don't want to embed research consent into the process for a person volunteering to receive some support,  making sure that you provide details of a withdrawal mechanism.  So participants know what they need to do to withdraw their consent later so that the data could be removed from the banking or repository.  And then thinking about the mechanism by which other researchers will access that data.  So will it be that they're accessing it in an identified form or what's the constituents role in terms of that access.  And really in terms of whether or not the other researchers will see it in an identified form,  identifiable or not identifiable.  Obviously it's really important to make sure that you're keeping good records.  So the systems that we're talking about in the workshop today are examples of the ways in which you can record the information.  So if you all forgive some charnalists of promotion, but you don't really have any choice because I'm the one with the mic.  But along with a couple of colleagues of mine, Colin Thompson, Mark Israel and Martin Tollett from New Zealand,  we maintain a couple of free resources for researchers.  So one of them is a resource library that includes a variety of documents.  And then also there's a research ethics monthly blog. So both of those talk about research ethics and research integrity.  I definitely encourage you to drop by and have a look at those resources.  Thank you, Gary.  Yeah, there's one question.  So thank you very much, Gary.  We've got 78 connections on the line at the moment.  Just to let you, speakers, presenters know, a question of what is the timeframe for the review of the national statement and which body is overseeing the review?  Okay, I mean, that's a really good question because first of all, it's important to stress that the review bodies are including people from the ARC,  the University of Australia and the NHMRC and various nominees.  So there's a real attempt underway to make sure that it's an inclusive approach to speak to the wide gamut of research designs.  The action review of the national statement, it's an ongoing rolling review.  There's material that's being released progressively, so that's why last year we saw the opt-out approach to recruitment and consent was released as part of that rolling review.  The next block of material which I've been involved in hopefully will appear before the end of this year and public consultation will happen well before that.  In terms of the Australian Code, I'm not sure because I'm not privy to that conversation, but I think it's close to being ready for public consultation.  I guess just to reiterate to the group, get involved in that public consultation, even if you look at it and think you like what's being done,  make sure you speak up to express the fact that you're happy with it because otherwise the only voices we hear are the people that aren't happy.  So make sure you're involved and you speak up for useful and constructive change.  That was excellent. Thank you. The other question is, do you think researchers are better informed about ethical issues related to data management now than they were several years ago,  or do the same challenges remain?  I mean, once again, that's a really good question.  I mean, one of the things, if you're sort of watching the media or if you've got the Google set up, you will have seen in the last – I've just asked a couple of months there was the emotional contagion, social media,  I might say fiasco, but problem.  And there was also recently the OKCupid one which has sort of highlighted the fact that it's very easy for people to run into trouble.  I think that there is a growing awareness, but I think that it's really important that institutions provide resource material to support researchers.  I think that we all need to work a lot harder in terms of making sure those resources are available.  And I think, you know, I'm not talking about rule books.  I'm not talking about a rule book about how to fill out an application form well.  I'm talking about things that support the reflective practice of researchers.  And hopefully that's something that we'll be seeing more of.  But, you know, hey, there's a reciprocal obligation on researchers as well to abound themselves of those resources.  Excellent. Thanks very much, Gary.  That's all the question – oh, sorry, there's a comment here.  Can you comment on data governance and whether you think data governance needs a national approach?  What is your vision for this?  Before I answer, I just want to reiterate again, I'm not speaking on behalf of the ASCAA and the ASL University of Australia.  I mean, I think that there is an argument to have a national reference point.  I'm not saying that we need a national standard that we all have to comply with,  but I think that there is value to having a resource that's informing our practice.  So, you know, I think that that's the space that something's been used for the being done.  One of the reasons why the four of us set up the RX Web Resources was to try and encourage some of that conversation between them.  Fantastic. Thank you.  I'll just clarify that that question came from Dr Weeming Boone at the NHMRC.  So maybe a conversation continuing there.  Disclamer, disclaimer, disclaimer.
Systems_Supporting_the_Ethical_Management_of_Research_Data_Presented_by_Gary_Allen_TxfUIrwm5lk_1_0_371.png Systems_Supporting_the_Ethical_Management_of_Research_Data_Presented_by_Gary_Allen_TxfUIrwm5lk_1_372_4355.png Systems_Supporting_the_Ethical_Management_of_Research_Data_Presented_by_Gary_Allen_TxfUIrwm5lk_1_4356_4535.png Systems_Supporting_the_Ethical_Management_of_Research_Data_Presented_by_Gary_Allen_TxfUIrwm5lk_1_4536_4643.png Systems_Supporting_the_Ethical_Management_of_Research_Data_Presented_by_Gary_Allen_TxfUIrwm5lk_1_4644_5075.png Systems_Supporting_the_Ethical_Management_of_Research_Data_Presented_by_Gary_Allen_TxfUIrwm5lk_1_5076_5123.png Systems_Supporting_the_Ethical_Management_of_Research_Data_Presented_by_Gary_Allen_TxfUIrwm5lk_1_5124_5567.png Systems_Supporting_the_Ethical_Management_of_Research_Data_Presented_by_Gary_Allen_TxfUIrwm5lk_1_5568_6779.png Systems_Supporting_the_Ethical_Management_of_Research_Data_Presented_by_Gary_Allen_TxfUIrwm5lk_1_6780_6839.png Systems_Supporting_the_Ethical_Management_of_Research_Data_Presented_by_Gary_Allen_TxfUIrwm5lk_1_6840_6959.png Systems_Supporting_the_Ethical_Management_of_Research_Data_Presented_by_Gary_Allen_TxfUIrwm5lk_1_6960_8675.png Systems_Supporting_the_Ethical_Management_of_Research_Data_Presented_by_Gary_Allen_TxfUIrwm5lk_1_8676_8951.png Systems_Supporting_the_Ethical_Management_of_Research_Data_Presented_by_Gary_Allen_TxfUIrwm5lk_1_8952_9035.png Systems_Supporting_the_Ethical_Management_of_Research_Data_Presented_by_Gary_Allen_TxfUIrwm5lk_1_9036_9407.png Systems_Supporting_the_Ethical_Management_of_Research_Data_Presented_by_Gary_Allen_TxfUIrwm5lk_1_9408_9683.png Systems_Supporting_the_Ethical_Management_of_Research_Data_Presented_by_Gary_Allen_TxfUIrwm5lk_1_9684_12059.png Systems_Supporting_the_Ethical_Management_of_Research_Data_Presented_by_Gary_Allen_TxfUIrwm5lk_1_12060_12215.png Systems_Supporting_the_Ethical_Management_of_Research_Data_Presented_by_Gary_Allen_TxfUIrwm5lk_1_12216_12467.png Systems_Supporting_the_Ethical_Management_of_Research_Data_Presented_by_Gary_Allen_TxfUIrwm5lk_1_12468_14591.png Systems_Supporting_the_Ethical_Management_of_Research_Data_Presented_by_Gary_Allen_TxfUIrwm5lk_1_14592_19271.png Systems_Supporting_the_Ethical_Management_of_Research_Data_Presented_by_Gary_Allen_TxfUIrwm5lk_1_19272_19343.png Systems_Supporting_the_Ethical_Management_of_Research_Data_Presented_by_Gary_Allen_TxfUIrwm5lk_1_19344_21676.png
So although I serve on a few committees with nominees from the ARC and the Interim RC and Universities of Australia, I'm not speaking on behalf of those August bodies. It's only opinions I express are definitely my own. So what I do to start off with is really talking about sort of the brass tacks when we're thinking about data. So generally we're thinking about the way in which is access collected or generated. And that data can be in a variety of forms. So it might be documents or survey responses. It might be test results or some sort of audiovisual files. It could be a range of information. When we're talking about personal information, that might be individually identifiable. These are the terms that the national statement uses. So it can be individually identifiable or re-identifiable. So we're talking about something that may be as coded where the researchers have got access to the code key and then non-identifiable. So that might be coded by an agency that's supplying it to the researchers but the researchers don't actually have the code key. Or all of the identifying information has been stripped out. So it's anonymous. And I think it's worthwhile pausing in terms of sensitive personal information because information is not sensitive personal just because it's humiliating or embarrassing or might expose people to risk. Because the Privacy Act actually defines very clearly what's considered sensitive information. The Privacy Act actually closely defines what's considered to be personal information. And so when we're asking participants to give their consent, that consent might be specified for a particular project or a particular use, a particular group of researchers, or it might be extended in terms of future research by that team that's in a related area, or it might be unspecified, it might be a general consent for the research use that they were information. And we need to think about information both in terms of when it was accessed, collected or generated. We need to think about then during the course of the research where it's being stored or how it's being communicated between collaborating with the researchers and then after the selling. And then finally in terms of how it's going to be disclosed or shared whether or not it's going to be added to a repository or bank in some way, if it isn't actually going to be a feature of the output for research. So a single project actually might involve sort of multiples of all of those settings in terms of things like the form of the data, whether or not their personal information, the degree of which they're identified, and then things like the types of consent that's obtained. So we might actually have multiple settings for different data across a project. But I think it's important to reiterate to everybody that just because research involves ethical sensitivities or risks, it doesn't mean that research is compromised or it's a problem. Quite often the fact that there's ethical challenges with research is actually indicated that it's perhaps very important that it's going to make some sort of social or broader contribution. And so we should be embracing when the research involves those challenges, not trying to avoid them. So the fact that there are ethical concerns, that's not a reason to say that the research isn't valid or to say that we shouldn't be accessing or sharing of data. It just might be means that we require a bit more precautions or arrangements in place. And for individual researchers, you need to be prepared for the fact that the group we've been revealing in research might not actually be that familiar with your research design or the topic area. So it may well be that you need to sort of engage with the reviewers to explain the reasons for the research, explain what the benefits are, explain about the data sharing and be ready to justify your approach and take an educative role in terms of those reviewers. And I'm not talking about it being confrontational, although it's been known to happen. But there should be that sort of engaged discussion between researchers and reviewers. But with some careful preparation, it's possible to avoid delays or problems with the research ethics review of a piece of work in the sharing of data. So when you're thinking about sort of research ethics and research integrity of data, there's a few things to think very quickly. So the guidance in terms of human research ethics can be found in the national statement and in terms of research integrity, it can be found in the Australian Code. And both of those documents have got content on a particular point when we're talking about this issue. So matters like privacy, consent and risk, you'll find across those two documents. And currently there's reviews underway in terms of both the national statement and the Australian Code. And I should stress that I'm involved in the review of the national statement. So there are updates going on and there's public consultations coming. So as a group it's important you keep out, you're out for that and you have input as the reviews are going on. For those of you that may be a base outside of Australia or during a search outside of Australia, there's comparable documents in other jurisdictions. And in fact over the course of the last decade, there's increasingly research ethics and research integrity frameworks in sort of continental Europe, in Africa, South East Asia and beyond. So you may need to actually refer to those documents in the other jurisdictions. So in terms of the frameworks, a couple of implications. One is the collection of the data and then the use, and maybe sharing the data, is more likely to be considered human research, particularly if it's identified information and so require some research ethics review. And it may well imply to sort of existing data sources, sort of material from the web or social media. And hopefully your institutional frameworks give you some advice in terms of whether or not it's considered human research. And so then because of that you need to be thinking about the consent that you obtain and whether or not it's specified, extended or unspecified, and what that consent allows for. You need to think about the degree to which that information is identifiable. So is it directly identified in terms of individuals? Is it possible that individuals could be identified by inference, including what, within social media there's, sorry, social science research increasingly, there's reflection on what we call internal identification. So if for instance you were talking about a group of recent ethics bureaucrats and you said that you spoke to a bureaucrat that gets around in the wheelchair and is in his forties and is losing his hair, you may not have said my name, but people that work in the sphere will know that you're talking about me. And sometimes the internal identification can be more problematic than sort of a general population identification. So we need to be reflecting in terms of are there risks associated with the degree to which people could be identified? Are there risks associated with the release of that information? I think it's important to recognize that there will be groups of people that won't be concerned if they're identified. It may well be that there's a situation that is talking about people that are relatively senior, that will be very able to look after their interests when they're concerned, but that's likely to be a project specific reflection. And so I tell you that there will be some participants who will demand to be identified. If you're talking about sort of action based on a particular issue, maybe a condition of them providing their information is that they will be identified. So that's something that you need to accommodate. So when you're seeking consent for the research use of information, there's a few things that you need to really cover. So there are things you need to include. So thinking ahead in terms of the sharing, banking and research, re-use of that information. Is it going to be headed to a repository? And talking about the degree to which it's going to be identifiable and really anticipating in terms of, and whether or not in terms of consent, the degree of specificity about how that information might be used for other research or shared for other purposes. Being careful not to embed research consent into other consent. So if you're doing research in an area like language support for international students, if you don't want to embed research consent into the process for a person volunteering to receive some support, making sure that you provide details of a withdrawal mechanism. So participants know what they need to do to withdraw their consent later so that the data could be removed from the banking or repository. And then thinking about the mechanism by which other researchers will access that data. So will it be that they're accessing it in an identified form or what's the constituents role in terms of that access. And really in terms of whether or not the other researchers will see it in an identified form, identifiable or not identifiable. Obviously it's really important to make sure that you're keeping good records. So the systems that we're talking about in the workshop today are examples of the ways in which you can record the information. So if you all forgive some charnalists of promotion, but you don't really have any choice because I'm the one with the mic. But along with a couple of colleagues of mine, Colin Thompson, Mark Israel and Martin Tollett from New Zealand, we maintain a couple of free resources for researchers. So one of them is a resource library that includes a variety of documents. And then also there's a research ethics monthly blog. So both of those talk about research ethics and research integrity. I definitely encourage you to drop by and have a look at those resources. Thank you, Gary. Yeah, there's one question. So thank you very much, Gary. We've got 78 connections on the line at the moment. Just to let you, speakers, presenters know, a question of what is the timeframe for the review of the national statement and which body is overseeing the review? Okay, I mean, that's a really good question because first of all, it's important to stress that the review bodies are including people from the ARC, the University of Australia and the NHMRC and various nominees. So there's a real attempt underway to make sure that it's an inclusive approach to speak to the wide gamut of research designs. The action review of the national statement, it's an ongoing rolling review. There's material that's being released progressively, so that's why last year we saw the opt-out approach to recruitment and consent was released as part of that rolling review. The next block of material which I've been involved in hopefully will appear before the end of this year and public consultation will happen well before that. In terms of the Australian Code, I'm not sure because I'm not privy to that conversation, but I think it's close to being ready for public consultation. I guess just to reiterate to the group, get involved in that public consultation, even if you look at it and think you like what's being done, make sure you speak up to express the fact that you're happy with it because otherwise the only voices we hear are the people that aren't happy. So make sure you're involved and you speak up for useful and constructive change. That was excellent. Thank you. The other question is, do you think researchers are better informed about ethical issues related to data management now than they were several years ago, or do the same challenges remain? I mean, once again, that's a really good question. I mean, one of the things, if you're sort of watching the media or if you've got the Google set up, you will have seen in the last – I've just asked a couple of months there was the emotional contagion, social media, I might say fiasco, but problem. And there was also recently the OKCupid one which has sort of highlighted the fact that it's very easy for people to run into trouble. I think that there is a growing awareness, but I think that it's really important that institutions provide resource material to support researchers. I think that we all need to work a lot harder in terms of making sure those resources are available. And I think, you know, I'm not talking about rule books. I'm not talking about a rule book about how to fill out an application form well. I'm talking about things that support the reflective practice of researchers. And hopefully that's something that we'll be seeing more of. But, you know, hey, there's a reciprocal obligation on researchers as well to abound themselves of those resources. Excellent. Thanks very much, Gary. That's all the question – oh, sorry, there's a comment here. Can you comment on data governance and whether you think data governance needs a national approach? What is your vision for this? Before I answer, I just want to reiterate again, I'm not speaking on behalf of the ASCAA and the ASL University of Australia. I mean, I think that there is an argument to have a national reference point. I'm not saying that we need a national standard that we all have to comply with, but I think that there is value to having a resource that's informing our practice. So, you know, I think that that's the space that something's been used for the being done. One of the reasons why the four of us set up the RX Web Resources was to try and encourage some of that conversation between them. Fantastic. Thank you. I'll just clarify that that question came from Dr Weeming Boone at the NHMRC. So maybe a conversation continuing there. Disclamer, disclaimer, disclaimer.
that the national statement uses. So it can be particular project or a particular use, a We need to think about then during the course of research integrity of data, there's a few things national statement and in terms of research you have input as the reviews are going on. For and then the use, and maybe sharing the data, is within social media there's, sorry, social seeking consent for the research use of the systems that we're talking about in the that. In terms of the Australian Code, I'm not about ethical issues related to data management out an application form well. I'm talking about things that support the reflective practice of behalf of the ASCAA and the ASL University of