Dr Julia Adler-Milstein Describes the Challenges of Data Gathering

Julia Adler-Milstein, PhD, assistant professor at the School of Information and the School of Public Health at the University of Michigan, describes the challenges of data gathering, and ensuring not only that the data is accurate and complete, but that the patient can use that data and ultimately lead a healthier lifestyle with that knowledge.

Transcript (modified)

How can we ensure that the data being gathered is actionable and usable?

Yeah, that’s a great question. I think we’ve been working so hard just to get the data to be accessible that we, in some ways, haven’t even encountered that next level of challenge of “I’m looking at this data and it’s wrong” or “I’m looking at this data and there’s conflicting pieces.” I think there’s going to be a whole set of issues that will come that we’re going to have to grapple with to make sure that the data is accurate and complete.

And, again, you know there’s going to be the clinical notes side of it, which is really the clinicians’ take on what’s going on, but what if that differs from what the patient feels? And so I think it’s a whole uncharted side of issues.

But what I think is really clear and is, in some ways, what I think is right—I mean, the patient needs to dictate this. If they want access to all their data, and they want to use it in a certain way, no one should really be saying no, you shouldn’t do that. So I think that that’s where they’re seeing tremendous agreement momentum.

But then, as you said, then we’re going to have to figure out how to use the data well and that’s, I think, much less clear on how to do that, and who’s going to do that, and how to make sure that, at the end of this, patients come out with a clearer sense of how to lead healthy lives.