Dr Julia Adler-Milstein Worries About Competing Demands With Patient Data Access

Getting patients access to their own data is a good thing that will increase engagement, but it is important that improving access to data will create cohesive care for the patient and not lead to fragmentation, said Julia Adler-Milstein, PhD, assistant professor at the School of Information and the School of Public Health at the University of Michigan.

Transcript (slightly modified)

New guidelines issues by the Obama administration have made it easier for patients to access their own medical records. Do you see a greater push throughout the healthcare industry to increase patient engagement?

That is the key enabling piece, is getting patients access to their own data. I don’t think anyone debates that patients need to at least have that option, and that once patients have really good access to their data, it will enable a whole host of other companies, apps, whatever it may be, there will be so many things that will be enabled to really help patients make use of that data in an effective way.

I think the key question is, “Who is going to be in the forefront of leading that?” And is it going to be done in a way that creates cohesive care for the patient? Or is it going to lead to fragmentation, where I download the data to my phone and I get a set of recommendations or suggestions for what I should do and then I take that to my doctor, and they say, “oh no, don’t listen to that, this is the right thing.”

So that’s where I’m sort of concerned is whether once we open the floodgates are patients really going to be better off or not. And are we going to approach this in a way that provides them better care where they are at the center of it.

I worry instead that what we’re going to do is create a lot of competing demands for their data and attention and recommendation, and, again, I’m not sure patients are, at the end of that, going to feel, “Oh, I’m so much better off.”