De-identification and Quadrant

Quadrant is all about making the management of your research participants and project easier, more effective and ethical. Every feature in Quadrant is designed to help your research and remove the burden associate with the often repetitive administrative tasks that you need to do as part of a good research management process.

The Quadrant system already provides numerous ways to lessen the administrative too-and-fro of running a research project. For example, with Quadrant you don’t need to keep multiple spreadsheets or develop databases to track, record details and store files associated with your participants. In Quadrant all you need to do is set your Participant Data Fields and provide access to your Team Members and everything can be recorded and stored in the one secure spot.

However there is more to Quadrant just storing participant details. For this blog I’m going to talk about the use of automatic de-identification numbers and how these can help in your research. I’ll also provide a small glimpse into where Quadrant is moving to make the process of de-identification easier and less cumbersome.

De-identification and ethics 

 

De-identification of participants is a common practice in good research project management. It is normally requested by Human Research Ethics Committees and it helps:

• protect confidential and personal identification of your research participants;
• minimise accidental exposure of sensitive information to external parties throughout the research process.

 

The normal de-identification process 

 

De-identification can be achieved in numerous ways but the general process involves:

1.  Ascertain what information you are collecting as being identifiable. Depending upon the sensitivity of information, context or group of your participants this may include names, contact details, diagnosis and regions/ locations. Often it will also include outcomes from your research process including consent forms, interview recordings and sound files, surveys and transcriptions.
2. Develop a codebook that provides a “key” in which participants can be identified but would not be easily distinguishable to external parties.
3. De-identify data sets by replacing any reference to identifying information with the arbitrary code which is unique to the individual. (Although this is normally only considered for text based data. De-identifying audio and video recordings is difficult and usually beyond the resources of most research groups).
4. Delete identifiable data once appropriately de-identified.
5. Try to keep the codebook separate from the de-identified data!

Problems with the de-identification process 

 

This process works well but is not always fail-proof. Some reasons for this is:

• It requires a lot of discipline and training across research teams to be consistent;
• It is often burdensome and takes a lot of time to complete and complicated in large teams;
• Identified data often needs to be available to complete research steps (e.g. contacting a participant for an interview);
• De-identification attributes go missing or are overlooked. I have seen times where a entire research project has been de-identified but the transcription file name is name after the participant

These reasons sits squarely between the realities of running a research project compared to the not-real-world guidelines of best practice. We all try to achieve best practice but it can be difficult, particularly when our resources are constrained, we are busy and there is always pressure to produce outcomes.

That’s why, at Quadrant, we have been thinking about ways to make the de-identification process smoother, less burdensome and intuitive for your research process.
 

Introducing Participant ID # 

In the latest Quadrant upgrade you may have noticed the appearance of ID# on the All Projects Participant, My Participants and Edit Participant screens.

This ID# is an unique random number that is automatically assigned to each participant or subject that you enter into Quadrant. It is never replaced or reused and always remains attached to the row or participant. If you delete a participant that ID# will never be reused again.

Within your research process your can use this ID# number to refer to the participant in discussions outside of the Quadrant system such as in documents, emails and files. Some research teams will be using the ID# to schedule a book interviews.
 

It’s only the start!

The above introduction of the Participant ID# to Quadrant is just the start of a host a features that will make your research process smoother. In coming months will be introducing identifiable tags for both Participant Data Fields, files and comments that you upload to Quadrant. This will allow you to easily set permissions that only allow your Team Members to view de-identifiable information without the need to manually complete the process. Also at the end of the project you will be able to archive de-identified information and delete identifiable information.

We would love to hear how you manage de-identification in your projects. Don’t hesitate to share below.