October 15, 2012

Vizzini's View of Diabetes Data Standards

One of the earliest YDMV posts stated out my view on diabetes data:
Type 1 isn’t all about the numbers. It is about kids living their lives. That said there are one hell of a lot of numbers. We gotta deal with the numbers, so we can love the kids as kids. Nobody need love the numbers. 
There are a ton of little electronic machines that produce billions and billions of numbers (and about as many strips on the floor). At times it seems we are floundering in a sea of data points (and strips on the floor). Unfortunately each machine speaks its own language. What we need is the UN. United Numbers.
It seems that I am not the part of the diabetes universe that sees data standards as a problem.  I recently read two articles that make the case for researchers to have a common diabetes data set. Data Standards in Diabetes Patient Registries (Journal of Diabetes Science and Technology May 2011) and A Strategy of Defining Common Data Elements to Support Clinical Care and Secondary Use in Clinical Research, (AMIA Clinical Research Informatics Summit 2010) both make the case that research would be better off with standards to facilitate data that researches, “collect once, use many times.”

As I understand the issue, research reinvents the diabetes data wheel with virtually every study. Each study collects what they are interested in but since it is not a common data set few studies have data that can be combined and used to further additional investigation.

One paper even has this lovely little graphic that helps demonstrate the overlap of parties that could benefit from common data. 

The second paper goes on to talk about these stakeholders in detail:
“There were no defined data standards for primary or secondary use in T1D at the start of this project, and so it is likely that the elements we have compiled will be subject to debate and revision when vetted in a broader T1D stakeholder community, which should include perspectives from diabetes care, research, population monitoring, and quality measurement.”
Notice anybody missing from that? 

I did. 

People with Diabetes.

It is their data.

In short if researchers want people to share their health information, there should be a value for participating. The ethical term is beneficence, that the research does some good for the participants.

I think that for diabetes research to find solutions that improve the lives of people living with diabetes those researchers need to ask the right questions. Starting with: Who is a stakeholder? As the risk of sounding like Vizzini, it seems inconceivable to effectively improve patient outcomes without seeing people with diabetes as a stakeholder in the process.