EHR systems have been built with varying sets of standards, and getting a patient record (or records) from one system to another is a tedious, and often impossible affair. This is why so much emphasis is now being placed on EHR interoperability.
EHR interoperability is a road paved with concerns around privacy and security. It’s a fundamental right for a patient to keep their medical records private. Without this right, individuals can be subject to embarrassment, judgement and discrimination from employers, colleagues, insurance companies, and even friends.
In a world where people can pay their bills, do their banking, buy stocks, and order groceries online, they should also be able to view their medical records. Further to that, de-identified data from medical records can help immensely with population health, from being able to identify outbreaks sooner, to providing researchers and scientists with data that can help accelerate the discovery of new cures.
This is such a pervasive issue right now that even the POTUS (President of the United States), Barack Obama, weighed in on the discussion during the Precision Medicine Panel.
The Precision Medicine Initiative (PMI), which was announced by President Obama in his 2015 State of the Union address, is an emerging approach for disease treatment and prevention that takes into account individual variability in genes, environment, and lifestyle for each person. While some advances in precision medicine have been made, the practice is not currently in use for most diseases. $215 million was committed to the Initiative in 2016.
The President did an eloquent job of explaining how the PMI approach differs from conventional medicine:
“So often what we label as a health care system is actually more of a disease-care system in which the patient is passive, you wait until you get sick, a bunch of experts then help you solve it. And one of the promises of precision medicine is not just identifying — or giving researchers and medical practitioners tools to help cure people; it is also empowering individuals to monitor and take a more active role in their own health.”
The President went on to explain how large datasets can allow us to see patterns that were previously not visible:
“With respect to being able to map out what’s happening with these different diseases and what are the genetic similarities, what are the differences, why are some people doing okay with it, why are people not, the more samples we have, the more data we have, the more we’re going to be able to learn. Part of the problem we have right now is, is that every patient’s data is solid — it’s in a hospital here, a hospital there, a doctor here, a lab there. And so the goal here is if we can pool and create a common database of ultimately a million people that’s diverse so that they have a lot of genetic variation, we can now take a disease that may be relatively rare, but because we have a pretty large sample size and start seeing patterns that we might not have seen before.”
The President also stressed how patients and EHR vendors need to work together to enable data to be used for precision medicine:
“In terms of the model that we use for health records that hopefully will be digitalized more and more, companies help hospitals keep and collect that data. And they should get paid for that. They’re building software; they’re building an infrastructure. On the other hand, we don’t want that data just trapped. So if I am sick and voluntarily I want to join with other people who have a similar disease to mine and donate our data to help accelerate cures, I’ve got to be able to work with the electronic health record companies to make sure that I can do that easily. And there may be some commercial resistance to that that we have to talk about — although we’re seeing some terrific participation now, and that’s part of what we’re announcing, of those companies in terms of helping that happen.”
All in all, the President and this administration have made some great steps towards incorporating data into their long-term strategy for public health. There are so many broad uses and applications for data from medical records, that we probably have yet to scratch the surface. Technology can spur innovation, but only if there’s a willingness to do so.