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This email thread appeared on the ands-partners Google group and has been reproduced here with the permission of all who took part in the discussion - Susannah

Kate Stanton via googlegroups.com

14/11/2011

to ands-partners

Hi everyone,

I have another question regarding the Seeding the Commons Projects – specifically about the data interview process and our engagement with the academic community. My question is... do we need any kind of ethics clearance before we interview researchers about their data and DM requirements? Human ethics and use of data interview materials was mentioned in one of the BoF discussions at the recent eResearch Australasia 2011 conference, and it got me thinking...

During Seeding the Commons, we’ll be collecting information from human participants – researchers - with their informed consent. In addition, we’ll be posting researchers’ names and institutional contact details online! In the context of research this would be pretty low risk exercise, however, we are still collecting information from researchers, in text and/or audio format. We might even like to video researchers talking about their projects as support/promotional materials for the website. I can’t find anything on our Research Integrity website that defines an internal project such as this as “research” or not – or whether we might fall under human ethics requirements.

So, can anyone tell me...

a) If they consulted with their Human Ethics Committees prior to beginning the research data interview aspect of their seeding the commons projects,

b) If you think it might be necessary/a good idea/worthwhile to get any sort of ethics clearance before collecting research data interview data?

c) Other related thoughts...?

I thought it might be a good idea to think this through we begin... but then again, clearance may be unnecessary and I may just be over-thinking it.

I look forward to hearing what you think about this... many thanks,

Kate


KATE STANTON | Research Data Management Coordinator, Seeding the Commons Project
Sydney eScholarship | University Library


Sam Searle sam.searle.01@gmail.com

14/11/2011

to Kate, ands-partners
Hi Kate - it is definitely good to understand your institution's ethics committee's position on this, not least because researchers are likely to ask about it! We were asked about this at Monash by a researcher involved in our pilot phase, and at that point we did check it out and were pleased to find out that in our case at least formal clearance was not required.

At Monash, a policy bank document notes that "while quality assurance and research activities lie on a continuum, the Monash University Human Research Ethics Committee (MUHREC) has adopted the National Health and Medical Research Council (NHMRC) position that most quality assurance activities do not require ethical clearance, and hence have adopted the principle that university surveys evaluating a service, investigative project or technique do not require review by MUHREC."

Elsewhere on our intranet, a distinction was also made between survey-type activities that are conducted for administrative and quality assurance purposes rather than research purposes, and we assessed that gathering the information required to make collection records for the ARROW Repository and Research Data Australia (and assessing new processes for performing this activity and for planning future data management services) were about administration rather than research.

Having said that, we have chosen to adopt some practices to protect the confidentiality of our interviewees, including:

We seek permission to record the interviews at the beginning, and keep the recordings in a password-protected shared drive with access restricted to the project team.
We will be giving every researcher the opportunity to review the RIF-CS record before it goes live - we will make any suggested changes, and should a researcher decided at that point that they no longer wanted to participate in the project, we would also respect their wishes and not make that record available. (This seems likely to happen in at least one case so far.)
When writing up reports about the project, we have anonymised quotes that we sought from our pilot participants in an evaluation.
Information from interviews about data management issues that will not be part of the RIF-CS record would be reported back to ANDS and internal committees through aggregate statistics or 'themes' rather than verbatim comments.
When we decided that we wanted a training video of one of the interviews, we specifically sought the permission of the researcher beforehand for this particular use.

Institutions may interpret these guidelines differently, but I hope this is useful in explaining how we approached this.

Sam

------------------------------
-----------------

Sam Searle
Data Management Coordinator
Monash University Library


15/11/2011

to Sam, ands-partners

Hi Sam,

Thank you for such a comprehensive reply! Getting an idea of your approach is a great help and much appreciated. Lovely to meet you in person at eResearch too.

From what have found yesterday and this morning, and from your reply, I think that collecting information to create records for the StC project would fall under “quality assurance” or “investigative project” activities rather than “research” activities and would not require any kind of HE clearance.

I think your approaches are sound, and would make sure any ethics-related issues are addressed. We would, of course ask for permission to record interviews (text and audio) at the beginning of the process, and ask for permission to video if applicable. give the researcher the option to view the draft record and make any changes.

I’ll follow this up with Belinda – I think the next step is to get familiar with the relevant policies, and check with one of the contacts in Research Support if anything is unclear.

Many thanks,

Kate


From: Sam Searle [mailto:samantha.searle@monash.edu]
Sent: Monday, 14 November 2011 8:02 PM
To: Kate Stanton
Cc: ands-partners@googlegroups.com
Subject: Re: Question regarding data interview process - "research" with human participants


Hi Kate - it is definitely good to understand your institution's ethics committee's position on this, not least because researchers are likely to ask about it! We were asked about this at Monash by a researcher involved in our pilot phase, and at that point we did check it out and were pleased to find out that in our case at least formal clearance was not required.

At Monash, a policy bank document notes that "while quality assurance and research activities lie on a continuum, the Monash University Human Research Ethics Committee (MUHREC) has adopted the National Health and Medical Research Council (NHMRC) position that most quality assurance activities do not require ethical clearance, and hence have adopted the principle that university surveys evaluating a service, investigative project or technique do not require review by MUHREC."

Elsewhere on our intranet, a distinction was also made between survey-type activities that are conducted for administrative and quality assurance purposes rather than research purposes, and we assessed that gathering the information required to make collection records for the ARROW Repository and Research Data Australia (and assessing new processes for performing this activity and for planning future data management services) were about administration and quality assurance rather than research purposes.

Having said that, we have chosen to adopt some of the practices that would be required were the process subject to an ethics clearance process, including:

We seek permission to record the interviews at the beginning, and keep these interviews in a password-protected shared drive with access restricted to the project team.
We will be giving every researcher the opportunity to review the RIF-CS record before it goes live - we will make any suggested changes, and should a researcher decided at that point that they no longer wanted to participate in the project, we would also respect their wishes and not make that record available. (This seems likely to happen in at least one case so far.)
When writing up reports about the project, we have anonymised quotes that we sought from our pilot participants in an evaluation.
Information from interviews about data management issues that will not be part of the RIF-CS record would be reported back to ANDS and internal committees through aggregate statistics or 'themes' rather than verbatim comments.
When we decided that we wanted a training video of one of the interviews, we specifically sought the permission of the researcher beforehand for this particular use.

Joanne Croucher

15/11/2011

to Kate, Sam, ands-partners

Hi Kate,

I would second Sam’s comments about the need to understand your institution’s ethics committee position on these type of questions and seeking advice directly early in the project – prior to any interviews. Our experience has been that if you don’t have prior ethics approval, you may be limited in how you can use interview material. Likewise I believe that it is critical to have a dialogue with any interviewees to understand their needs / expectations and clearly define how the interview material will be managed and used. Carefully consider both planned and possible future uses of the material you collect as this may change the framework regarding ethics (e.g. online dissemination, reporting at conferences and other forums). Whether a standard or custom appearance release form is appropriate will depend on the institution and/or specific project.

Best regards,

Jo

Joanne Croucher

Support Officer, Library Repository Services, UNSW Library




From: ands-partners@googlegroups.com [mailto:ands-partners@googlegroups.com] On Behalf Of Kate Stanton
Sent: Tuesday, 15 November 2011 9:05 AM
To: Sam Searle
Cc: ands-partners@googlegroups.com
Subject: RE: Question regarding data interview process - "research" with human participants
Terri Dentry

15/11/2011

to Kate, Sam, ands-partners

Hi Kate and Sam

In addition to all that great outline from Sam – at VU we are moving to the use of online ethics application forms (from next committee meetings in early 2012) and have discussed and had approval for the following extra questions to be added to these forms (wording still to be approved):

1. Is there any reason why the data being collected in the process of this research project could NOT be cited in a national data repository

2. Is there any reason why the information provided on this form cannot be used as part of a record in a national data repository


The reason for question 2 is so that we have permission to reuse the information on the form (such as the lay description of the project, personnel, etc) in our ANDS workflow – ie VITRO will harvest this information directly from our RMS database, which is where the ethics form information is held.

The outline rationale provided to the ethics committees is below:

Where and when will the information be used?

Information from ethics forms and other admin systems may form the basis for descriptions of research activity, placing research data and collections in context. Such descriptions will be required for all registered research data but will only be released for internal or external view with the researcher's permission and when the researcher is ready. The information we seek will be initially used to populate the values of a Research Data Registry form which the researcher can then review and edit (VU ANDS project currently underway).
Where we’re headed – encouraging responsible conduct.

The research data, ideally maintained by the research owners, should be held in a secure institutional repository (eResearch storage under development) or in a secure discipline based repository. The researcher will be encouraged to consider, and plan for, data reuse under 3 access models: restricted access – where some conditions may be involved, embargo periods, or potentially access only to specific groups; negotiated access – where communication or collaboration is required; or open access.

In planning for the immediate research project needs, growing requirements, future data access, and data retention responsibilities, a research activity should have an articulated data management plan. Such a plan might succinctly state how data will be collected, managed, and stored throughout the research activity, including the intentions for make the data available in the future and through what mechanisms. Responsible data management and retention is required by the Australian code. In the case of research collaborations an agreement must outline the management of research data, materials and retention. Researchers will be asked to provide a brief data management plan associated with their research activities in the near future (QUEST project and eResearch planned activity). Ethics considerations may form a significant part in the planning: where data is held, what level of security is required, what data must be retained, what data can be made available, to whom, for what purposes, and how. We feel that ethics committee access to project plans will be essential, as ethical advice may be sought and concerns may need to be discussed.

Requiring that researchers consider data access and planning upfront will potentially save researchers time and effort, both during the project and beyond project funding.


From: ands-partners@googlegroups.com [mailto:ands-partners@googlegroups.com] On Behalf Of Kate Stanton

Sent: Tuesday, 15 November 2011 9:05 AM
To: Sam Searle
Cc: ands-partners@googlegroups.com
Subject: RE: Question regarding data interview process - "research" with human participants


15/11/2011

to Joanne, ands-partners

Hi Jo,

Thanks for your reply. It was one of your (or Kylie’s) comments in the BoF session prompted me into thinking about ethics and interview data collection within the StC projects. I need to have a discussion with our research support/research integrity people to check our institutional situation before we begin the interview process.

Many thanks,

Kate

From: Joanne Croucher [mailto:j.croucher@unsw.edu.au]
Sent: Tuesday, 15 November 2011 9:35 AM
To: Kate Stanton; Sam Searle
Kate Stanton via googlegroups.com

15/11/2011

to Terri, ands-partners

Hi Terri,

Thank you for your reply – I had not thought about including data management-related questions in an ethics application form – an excellent idea to capture this type of information at an existing administrative stage of the project, so the information can be re-used.

Great outline of the research data management context for the questions, and how the information will be used, too – thanks so much for sharing this!

Best regards,

Kate

15/11/2011
Cathy Miller

16/11/2011

to Kate, ands-partners

Hi Kate

In addition to the replies below, we found it useful for our Seeding the Commons project to have a ‘taste of our own medicine’ and prepare a data management plan for the data we are collecting during interviews. This helped us to work through exactly what we needed to keep, where, file naming conventions, and who would have access. It also prompted us to think about what details we wanted to be able to make available through our reporting e.g. do we want to include a list as an appendix in our final report of all our interviewees. (The answer was yes, and so we were able to disclose to interviewees that their participation will be identified.) It really forced us to decide up front where we wanted to go, so it was a worthwhile exercise.

Regards

Cathy.

--

Cathy Miller

Research Data Project Officer

The University of Adelaide, AUSTRALIA 5005


From: ands-partners@googlegroups.com [mailto:ands-partners@googlegroups.com] On Behalf Of Kate Stanton
Sent: Tuesday, 15 November 2011 10:10 AM
To: Terri Dentry
Kate Stanton

16/11/2011

to cathy.miller, ands-partners

Hi Cathy,

Thank you for this – another excellent idea! I have created a draft data management plan (at this stage, a little sketchy) as a means to test out a DMP tool application – but I think we should follow your lead and prepare a more comprehensive data management plan as a way of clarifying our own data collection processes and workflows. It would be a very useful document to have – and we may get asked about it at some point in the project! At the moment, we’re trying to decide on a workflow for capturing and storing the interview data – a formal workflow will probably be decided after the first few pilot interviews.

Thank you, and thanks everyone who contributed to this and my other questions. I really appreciate your thoughts, and your willingness to share your experiences and knowledge!

Many thanks,

Kate


From: Cathy Miller [mailto:cathy.miller@adelaide.edu.au]
Sent: Wednesday, 16 November 2011 11:20 AM

To: Kate Stanton
Cc: ands-partners@googlegroups.com
Subject: RE: Question regarding data interview process - "research" with human participants

Hi Kate

In addition to the replies below, we found it useful for our Seeding the Commons project to have a ‘taste of our own medicine’ and prepare a data management plan for the data we are collecting during interviews. This helped us to work through exactly what we needed to keep, where, file naming conventions, and who would have access. It also prompted us to think about what details we wanted to be able to make available through our reporting e.g. do we want to include a list as an appendix in our final report of all our interviewees. (The answer was yes, and so we were able to disclose to interviewees that their participation will be identified.) It really forced us to decide up front where we wanted to go, so it was a worthwhile exercise.

Regards

Cathy.

--

Cathy Miller

Research Data Project Officer

The University of Adelaide, AUSTRALIA 5005


Begin forwarded message:

*From: *"Kate Stanton" <kate.stanton@sydney.edu.au
<mailto:kate.stanton@sydney.edu.au>>
*Subject: **RE: Question regarding data interview process - "research"
with human participants*
*Date: *16 November 2011 8:43:02 AM AWST
*To: *<cathy.miller@adelaide.edu.au <mailto:cathy.miller@adelaide.edu.au>>
*Cc: *<ands-partners@googlegroups.com
<mailto:ands-partners@googlegroups.com>>


Hi Cathy,
Thank you for this – another excellent idea! I have created a draft
data management plan (at this stage, a little sketchy) as a means to
test out a DMP tool application – but I think we should follow your
lead and prepare a more comprehensive data management plan as a way of
clarifying our own data collection processes and workflows. It would
be a very useful document to have – and we may get asked about it at
some point in the project! At the moment, we’re trying to decide on a
workflow for capturing and storing the interview data – a formal
workflow will probably be decided after the first few pilot interviews.
Thank you, and thanks everyone who contributed to this and my other
questions. I really appreciate your thoughts, and your willingness to
share your experiences and knowledge!
Many thanks,
Kate

*From:*Cathy Miller [mailto:cathy.miller@adelaide.edu.au]
*Sent:*Wednesday, 16 November 2011 11:20 AM
*To:*Kate Stanton
*Cc:*ands-partners@googlegroups.com
<mailto:ands-partners@googlegroups.com>
*Subject:*RE: Question regarding data interview process - "research" with human participants
Hi Kate
In addition to the replies below, we found it useful for our Seeding
the Commons project to have a ‘taste of our own medicine’ and prepare
a data management plan for the data we are collecting during
interviews. This helped us to work through exactly what we needed to
keep, where, file naming conventions, and who would have access. It
also prompted us to think about what details we wanted to be able to
make available through our reporting e.g. do we want to include a list
as an appendix in our final report of all our interviewees. (The
answer was yes, and so we were able to disclose to interviewees that
their participation will be identified.) It really forced us to decide
up front where we wanted to go, so it was a worthwhile exercise.
Regards
Cathy.
--
Cathy Miller
Research Data Project Officer
The University of Adelaide, AUSTRALIA 5005


*From:*ands-partners@googlegroups.com
<mailto:ands-partners@googlegroups.com>
[mailto:ands-partners@googlegroups.com]*On Behalf Of*Kate Stanton
*Sent:*Tuesday, 15 November 2011 10:10 AM
*To:*Terri Dentry
*Cc:*ands-partners@googlegroups.com
<mailto:ands-partners@googlegroups.com>
*Subject:*RE: Question regarding data interview process - "research" with human participants
Hi Terri,
Thank you for your reply – I had not thought about including data
management-related questions in an ethics application form – an
excellent idea to capture this type of information at an existing
administrative stage of the project, so the information can be re-used.
Great outline of the research data management context for the
questions, and how the information will be used, too – thanks so much
for sharing this!
Best regards,
Kate
*From:*Terri Dentry [mailto:Terri.Dentry@vu.edu.au]
*Sent:*Tuesday, 15 November 2011 9:52 AM
*To:*Kate Stanton; Sam Searle
*Cc:*ands-partners@googlegroups.com
<mailto:ands-partners@googlegroups.com>
*Subject:*RE: Question regarding data interview process - "research"

with human participants
Hi Kate and Sam
In addition to all that great outline from Sam – at VU we are moving
to the use of online ethics application forms (from next committee
meetings in early 2012) and have discussed and had approval for the
following extra questions to be added to these forms (wording still to
be approved):
1.Is there any reason why the data being collected in the process of

this research project could NOT be cited in a national data repository
2.Is there any reason why the information provided on this form cannot
*From:*ands-partners@googlegroups.com
<mailto:ands-partners@googlegroups.com>
[mailto:ands-partners@googlegroups.com]*On Behalf Of*Kate Stanton
*Sent:*Tuesday, 15 November 2011 9:05 AM
*To:*Sam Searle
*Cc:*ands-partners@googlegroups.com
<mailto:ands-partners@googlegroups.com>
*Subject:*RE: Question regarding data interview process - "research"

with human participants
Hi Sam,
Thank you for such a comprehensive reply! Getting an idea of your
approach is a great help and much appreciated. Lovely to meet you in
person at eResearch too.
From what have found yesterday and this morning, and from your reply,
I think that collecting information to create records for the StC
project would fall under “quality assurance” or “investigative
project” activities rather than “research” activities and would not
require any kind of HE clearance.
I think your approaches are sound, and would make sure any
ethics-related issues are addressed. We would, of course ask for
permission to record interviews (text and audio) at the beginning of
the process, and ask for permission to video if applicable. give the
researcher the option to view the draft record and make any changes.
I’ll follow this up with Belinda – I think the next step is to get
familiar with the relevant policies, and check with one of the
contacts in Research Support if anything is unclear.
Many thanks,
Kate
*From:*Sam Searle [mailto:samantha.searle@monash.edu]
*Sent:*Monday, 14 November 2011 8:02 PM
*To:*Kate Stanton
*Cc:*ands-partners@googlegroups.com
<mailto:ands-partners@googlegroups.com>
*Subject:*Re: Question regarding data interview process - "research"
* We seek permission to record the interviews at the beginning, and

keep these interviews in a password-protected shared drive with
access restricted to the project team.
* We will be giving every researcher the opportunity to review the

RIF-CS record before it goes live - we will make any suggested
changes, and should a researcher decided at that point that they
no longer wanted to participate in the project, we would also
respect their wishes and not make that record available. (This
seems likely to happen in at least one case so far.)
* When writing up reports about the project, we have anonymised

quotes that we sought from our pilot participants in an evaluation.
* Information from interviews about data management issues that will

not be part of the RIF-CS record would be reported back to ANDS
and internal committees through aggregate statistics or 'themes'
rather than verbatim comments.
* When we decided that we wanted a training video of one of the

interviews, we specifically sought the permission of the
researcher beforehand for this particular use.

Institutions may interpret these guidelines differently, but I hope
this is useful in explaining how we approached this.

Sam

-----------------------------------------------

Sam Searle
Data Management Coordinator
Monash University Library


Margaret Henty via googlegroups.com

24/11/2011

to Kate, cathy.miller, ands-partners

Everyone

The discussion around the data interview process and ethics has been an interesting and worthwhile one.

You may not be aware that ANDS is currently engaged in looking in more depth at the issue of how to improve the rate of sharing of research data from projects which have been subject to ethical clearance. As part of this process we are developing a guide, to be called Ethics, Consent and Data Sharing, designed for researchers, members of ethics committees, research data managers and others engaged in the business of ensuring that research data is managed responsibly and well.

Research institutions already provide extensive guidance to researchers about ethical issues and requirements. This does not always include information about the relationship between ethical research and data sharing, and provide practical advice as to how data can be shared ethically and legally. This guide is intended to go some way to filling that gap.

The guide covers consent and data sharing, the opportunities for Human Research Ethics Committees to enable data sharing, how and when to anonymise data, access control and open access. It will also include case studies from several different data archives and, I hope, some of the work which has been done in Australia to encourage a greater degree of data sharing of this kind of data.

I sent out a message a couple of months ago to this group about the ethics work and am grateful to those of you who responded with stories of your own institutions’ experiences. I’d be delighted to hear from anyone else with a story to tell or information to share.

With best wishes,

Margaret

***********************************************************************
Margaret Henty
Senior Policy Advisor
Australian National Data Service



30 Jan

to Margaret, ands-partners

Hi Margaret,

I’ve just come back to your comment – apologies for the delay. I was not aware that ANDS is looking at developing a guide to ethics, consent and data sharing – that will be a very useful resource for researchers and research support services. Even within an administrative project such as Seeding the Commons, there are tensions between participant confidentiality and the want to share research data with others working on similar projects. University of Sydney StC obtained ethics clearance for our project to ensure we could share the results of the project with the community – but due to confidentiality reasons we are not able to share the interviews/raw data unless it is anonymous... and at this stage, I’m not sure that it is really possible to completely anonymise an entire interview recording!

I will be interested to see the guide when it is available – it sounds like a useful resource.

Best regards,

Kate

KATE STANTON | Research Data Management Coordinator, Seeding the Commons Project
Sydney eScholarship | University Library



NOTE: The ANDS Guide: Ethics consent and data sharing is available at: http://ands.org.au/guides/ethics-working-level.html

_________________
Susannah Sabine

Research Analyst
Australian National Data Service
ANU Division of Information
W. K. Hancock Building (#43)
The Australian National University
Canberra, ACT, 0200, AUSTRALIA
phone: +61 2 6125 1211


Fri Jul 27, 2012 1:17 pm
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