Bridging the Research Data Divide: rethinking long-term value and access for historical and contemporary maternal, infant, and child research

Engaging Researchers

Contacting Researchers

After we populated the metadata forms as much as possible with publicly available information, we contacted the researchers.

We sent researchers a targeted REDCap survey. The survey is very simple and basically asks if a) The researcher is willing to share research documents with us and b) if they are able to meet with us.

Here are the types of responses and how we have and will respond to them.

Documentation

If the researcher is willing to share documentation, we will use information from the documents to complete a more robust record in REDCap. After the researcher approves it, a rich study record will also be created in Dataverse. The record will be accompanied by research records and possibly deidentified datasets, if available and approved.

Although we have had a few researchers who have declined to share documents, because of time constraints, the typical response so far has been that researchers are willing to both share research documents and to meet. So we’re happy about that!

The documents include protocols, ethics submissions, consent forms, data collection forms, like questionnaires, case report forms, code sheets, information sheets, data dictionaries, grant applications, and publications. We use information from these documents to help us describe the studies.

Meeting

​One of the aims of the University of Alberta side of this “Bridging” project is to include researchers as much as possible as guiding elements throughout the process. Obviously these are very busy people. Which is one reason we are testing techniques to semi-automate the process of metadata creation. And so, when we come to the researcher with the metadata record for their study, it is already as filled out as possible. 

If the researcher agrees to meet, I arrange a meeting, go through the completed metadata form with them, and update the study record in REDCap. Again, a rich study record with research documents and possibly data will be created in Dataverse. 

During these meetings, I also engage in a broader discussion of metadata with researchers. Information gleaned from these talks will be analysed and incorporated into recommendations for the final metadata. But we also want their help to define the appropriate boundaries and level of granularity we should aim for when providing metadata for these types of research studies and data. 

Some of the things we want to find out from researchers areThese discussions will enable us to test our metadata in the field and incorporate feedback from researchers. The goal is to ultimately understand how metadata can best serve their needs and fit seamlessly into how they already think about and manage their data.

Unable to Fully Participate

If they don’t respond or don’t want to participate further, we still have a basic study record in REDCap, drawn from the publicly available sources. This is actually quite extensive, and provides a decent amount of contextual information, like title, PIs, contacts, and related publications. We will send this in survey form for the researcher to look over and approve. And the information will be added to the WCHRI dataverse study catalog if they agree.

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