Not collected? Not studied.

What do people consider to be clinical data, when they’re not wearing the hat of clinician, academic, researcher, insurer or EHR vendor? We can all agree that pulse, weight, diagnosis, procedure, medication are all clinical data. But what about data that answers questions like:

• What does feeling worse (or better) look like?
• What works for me when I’m in pain (or scared)?
• Where will I sleep tonight?
• Are my kids safe? Am I?
• Am I treated with respect?
• Do I understand what doctors and nurses say to me?
• Where do I go when I have a question or I forget what I’ve been told?
• How do I get food from the grocery store?
• How much can I afford out-of-pocket for my medicine?
• What are the most important things in my life, for my future, for my health?
• Can I live with this amount of pain or discomfort or indignity?
• Do I have access to a computer or a phone?

Health professionals call some of the data associated with these questions: social determinants (people call it life) and some is called other clinical data.

The ability to share health data for any reason depends on agreement that a data element means the same thing no matter what record or system it’s in. This isn’t easy for seemingly simple data like name and gender. I see six specialists in 3 EHRs with 3 portals. My name is written as Daniel vanLeeuwen and Danny van Leeuwen (among other variations). Often people can’t find me in their database and I have to run through many permutations of my name till they find me. The choices of gender or ethnic background often aren’t enough anymore. How do databases code transgender or mixed race people? Isn’t a majority of people mixed race? Much of this social determinant and other clinical data isn’t routinely collected or collected at all, ever (such as what works for me when I’m in pain ?). If it’s not even collected, how can there be rules to standardize it? If there’s no data how can it be used in studies or measured? Health research has a long way to go.