Commit c03c888c authored by Cassandra Gould van Praag's avatar Cassandra Gould van Praag
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Merge branch 'master' of git.fmrib.ox.ac.uk:open-science/community/data-sharing-decision-tree

parents cc26229f b0742d5d
# Open data sharing consent form
The fields below should be included on a separate consent form which is used to record the participant's consent to sharing their data openly on the WIN XNAT server.
I have read and understood the participant information sheet
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......@@ -16,7 +16,7 @@ This information sheet contains UK GDPR-specific wording that relates to privacy
> we need illustrations and videos. Maybe one of those "speed illustration" videos (e.g. [videoscribe](https://www.videoscribe.co/en)
An open data repository is an online portal from which professional scientists can share the data they have collected in a research study. The data are typically shared with scientists at other research institutions around the world.
An open data repository is an online database from which professional scientists can share the data they have collected in a research study. The data are typically shared with scientists at other research institutions around the world.
Open data repositories have been developed to make it easier to share data efficiently and effectively with other researchers. Easy access to collected data has multiple benefits, including:
......@@ -35,17 +35,29 @@ In the following sections we describe how we will manage access to your data, an
> What data will be shared (brain, behavioural)
## What will happen to my data?
> Jess com: I think we should be very clear here that they don't have to undergo any further research procedures to take part in the repository, we will just be using data that is already being collected as part of the research study they have already signed up to.
## Why have I been invited?
You have been invited because you are already taking part in another research study involving taking pictures of your brain. Our database is trying to include as many pictures of peoples brains as possible so that lots of data is available for research.
> Jess com: I've taken some additional headings from the template PIS protocol that is used for studies sponsored by CTRG.
## Do I have to sign up to the WIN open data repository?
No. Signing up to the repository is completely voluntary. Even if you do sign up, you can withdraw at a later date without giving a reason (further details on this can be found on the 'What if I change my mind?' section below). If you choose not to sign up to the WIN open data repository then you can still take part in the research study that you have already signed up for.
## What will happen to my data if I sign up?
All the data that is collected for the purposes of the study you have been recruited for will be considered for submission to the open data repository. For some data types we will undertake specific measures to ensure it is not possible to identify you from the data, while retaining the integrity and value of the data for further research.
> all this needs to be re-written for lay language...
### Confidentiality of your data
### Will my taking part in the repository be kept confidential?
To the best of our knowledge, the data we submit to the repository will not contain information that can directly identify you using reasonable means. The data will be given a code, so people will not know your name or which data are yours. Your name and other directly identifiable information will be omitted. Identifiable facial features on the brain scans will also be removed.
> do we need pictures of defacing? Will that just be confusing to people? Feel like we need to do some PPI on this...
> Jess com: no i'm not sure it's worth going into defacing... I think it just overcomplicates it and I think most people would assume that you can't see their face from a brain scan anyway. Could still do some PPI though.
Data can only be linked back to you using information available only to the data processor (the people involved in the study you have been recruited to). This linkage information will remain safely stored in the local research institute and never released on the open data repository. The data cannot be linked back to you in reports or publications about the study. However, by using additional data linked to your name (for example brain scans obtained from your medical records) one could potentially associate your imaging or other information in our database back to you. The risks of accessing such data from our servers has been assessed is considered to be low (see the university/centre Data Privacy Impact Assessment @<URL>).
> need to add and DPIA assessment
......@@ -61,11 +73,13 @@ Once another researcher has requested to access your data for reuse, they will b
Once the genuine interests of a researcher have been verified, they will be asked to digitally sign a [data usage agreement](data-usage-agreement.md) described the terms of the access and use of your de-identified data. Importantly, they will agree to make no attempts to re-identify you or share your data any further. Anyone wishing to use your data will always have to go through our system and agree to the same terms of usage.
### Retention period of your data
### How long will my data be kept for?
There is no plan to delete your data as they can be re-used for legitimate research interest. We will however re-evaluate every <number of years> years if it is worthwhile keeping them.
> Jess com: If we go for a research database through CTRG then you can get approval for 5 years. Every 5 years you have to request an extension for another 5 years and review where you're at etc. This is what they've done for the BHC.
## What if I change my mind?
You can withdraw your consent to the use of your personal data at any time. This applies to this study and also to the sharing for future research. You have however to understand that once shared with other institutions, it is impossible to remove your data from such copies.
You can withdraw your consent to the use of your personal data at any time without any effect on your clinical care or your involvement in other research studies. This applies to this study and also to the sharing for future research. You have however to understand that once shared with other institutions, it is impossible to remove your data from such copies.
## Passing your data on to countries outside of the UK and European Union
Your encoded data can also be accessed by and sent to countries outside the EU. This is necessary so that non-EU based scientists can run analyses to verify the scientific results produced from this study or for future unrelated research in the field of medical and cognitive neuroscience. In those countries, the EU rules on the protection of your personal data do not apply. However, your privacy will be protected at an equal level, by means of a [Data User Agreement](./data-usage-agreement.md).
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