The Human Side of Health Data

Thank you.

Thanks for the invitation.

And for listeners who may not be familiar with some of your work or even some of the terms, I thought we'd start out with a definition of health data interoperability and why should healthcare providers, patients and educators be familiar with it and care about it?

I think there's a perception that our health data are far more connected than they actually are.

That's the real issue, is that our health data are not well connected to each other.

Information that happens in primary care isn't always connected into the hospital systems.

Or even, you know, within particular systems, there's information loss and there's information that doesn't flow.

And ultimately... healthcare is almost always entirely about health information.

It's about using all the information you've got, whether that's diagnostics or other things, to try and make a decision on how to help this person right in front of you.

And, you know, I'm honored always to be able to speak with Terry, but, you know, Terry's family experience is a perfect manifestation of what happens when our health system isn't well connected our health information isn't well connected is that you know there's there's real harm that's done to to people when we are asked to act in ways without full information

so especially important for patients and families to know the limitations and advocate on behalf would you say terry

Yeah, for sure.

I think that is like I completely agree with Tyler that a lot of people make assumptions about where their information is available if it follows them through the system.

That's sort of how I think of the definition of interoperability, like in an ideal world, if we had a fully interoperable system.

health data systems, the information would follow the patient through the system and the patient's care team would have access to the information they need so that they can partner and make effective decisions and work together as a team.

For Greg's case, his information sat in different parts of the system.

And when he interacted with different parts of the system, they were making decisions based on the slice of the information.

And we're confident that especially he sort of had some symptoms that were flagged in primary care around the thickening of the epididymis and then had back pain.

That information was in completely different parts of the system that wasn't accessible to the different members of the health workforce.

Greg was seeking care from.

And we fully believe that especially those two pieces of information, if they were in the same place, the connection to testicular cancer would have been made a lot sooner, which can make a huge difference for patients.

And so it's stressful for the health workforce, and we know it's resulting in patient harm.

And so it's one of the reasons why we really are pushing and advocating for improvement in that space, whatever term we want to use to define it.

But it's really about that information following the patient and being available to the care team.

Yeah.