Sally Okun: It's Time to Empower the Health Data Being Collected

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There is a monumental amount of data being collected in healthcare, but now it’s time to make sure that data is empowered so it can start being used to answer questions and improve decision making, said Sally Okun, RN, MMHS, vice president, Policy and Ethics, PatientsLikeMe.

Transcript

What benefits does technology offer to gather and use real-world evidence? And what are the barriers preventing the use of real-world evidence in meaningful ways?

I think what we have ahead of us right now is a monumental amount of data. So, I think the real-world data that’s being generated, from all different sources—whether that’s from patients, themselves, and devices they may be using or electronic health records and claims data—it almost doesn’t matter. The volume is just growing so exponentially that we, actually, are ahead of ourselves in thinking about how we can turn that into evidence.

So, I think we’re a little ways from that, yet, so I think the benefits actually are that we should take a step back and recognize these digitally native data sets that we’re collecting from many situations that never existed before. So, we need to be thinking, what are the ways that we can start to harness the power of the data, first, empowering the data, actually, to start answering questions that could be better understood once we know what the evidence is we’re trying to generate.

So, I think we need to be careful not to suggest that real-world data is going to translate into real-world evidence without some fair amount of work in between. I think between the benefits of having more access, greater integration of a variety of different data sources coming together to really form a more holistic picture of a person is incredibly wonderful and I think people will welcome that; it’s the other side of that to say, then, “How can all of that information become meaningful to me when I’m trying to make a healthcare decision? Or when my clinician is trying to help me with a healthcare decision?”

How has the understanding of the need for patient input changed over the years?

I think in light of where we are, at ISPOR, and the fact that there’s been such huge advances in the last number of years in recognizing that people have preferences around the care—and not only the care, but also the research they want to participate in—and I think what we’re seeing here and recognizing here this year is that it’s finally starting to resonate with the research and clinical community in a way that people are embracing it. They want that kind of partnership.

I was on a panel this morning [Monday, May 21] that asked whether or not we’re at an inflection point, particularly around transforming digital health into something that can actually inform real-world evidence, and I do think we are. I think we’ve gotten to the point where patients and people are more engaged in their health. They’ve got more tools that can help them have that kind of experience with it.

Now, we really need to empower the data so that data becomes more meaningful in their daily lives. And I think that would be something that ISPOR as an organization can help advance in the kinds of work that it does and the research it supports.