Data Sharing
Our Community Researchers have taken part in two workshops so far, each of which has created ‘data’.
But what should happen to this data?
Change of use?
Some of the data was initially collected for the purposes of evaluation. However, upon further discussion with researchers, it turns out to be interesting ‘data’ in its own right.
So how do we deal with this ‘change of use’?
Answer: In this instance, because the requested change in use occurred within days, we were able to return to the participants and ask for both their permission to share and their input on how that should be done…. but had it been several months down the line, this may have been much harder.
Structure of data
The evaluation data was collected as voice recordings. To make sharing easier, these needed to be transcribed. But who should be allowed access to the raw recordings, in order to create this transcription?
Although several offers of help were made, it was decided that only those present at the original workshop (and hence had already heard the inputs) should be allowed to hear the unedited recordings. Hence, the facilitator undertook the transcription task.
Review the data
Alongside this change of use, participants were offered the chance to review and edit their own transcript. While there was an option to redact [black out/delete] personal details/oversharing, this also gave participants an opportunity to add clarifications and new ideas that had emerged in the intervening days.
The resulting transcripts were something that participants were willing and able to share.
Who to share with?
Following discussions amongst the group, it was decided that if something was to be shared, it should be ready for sharing with the world. There should be no preferential treatment given to researchers within the project and no ‘confidentiality’ clauses etc.
When the group are ready, the final versions will be shared on the public CWC blog; accessible to anyone who is interested. This removes any issues around secondary data sharing (when you give the data to one person, but they hand it on to someone else without asking permission).
Honour my words
Although the group are very generous with their sharing, they do not want their words to be taken out of context. It will therefore be made clear within the blog post that quotes should only be used in their entirety and that context should be provided.
A statement of attribution will be written, that should be included whenever the quotes are used.
If researchers or others want to know more or use the information in a different way, then contact details will be provided, so they can contact the Community Wellbeing Collective, for further discussions with the group or individual.
Anonymity
The group were keen that personal anonymity should be provided, but that the Community Wellbeing collective should be clearly acknowledged at all times.
This will be included in the statement of attribution.
Data Sharing is complex!
Through these discussions, reflections and decisions, we have all learnt more about the complexity of data handling and sharing; about ownership and acknowledgment, and how complex it can be to handle a change of purpose, after data has been collected.
[For information, the evaluation questions were:
- What do you think when we say the word ‘knowledge’?
- And what do you think when we say the word ‘data’?
- Who do you trust with data about your mental health? Who don’t you trust?
- How do you feel about considering your knowledge, expertise and experience as valid research?
Nearly an hour of content was generated from these questions.
Look out for a future blog post with our answers / reflections ]
Related Blog Posts:
The Community Wellbeing Collective – ways of working
Workshop 2: Generating Questions
