At the annual Fall Health 2.0 in Santa Clara, California, David Brailer, former National Coordinator at the ONC, declared that health IT has failed to deliver sustained clinical transformation because the focus has been on just clinical data that resides in HIPAA-covered institutions like providers and payers.
“It’s not a lack of software, it’s not a lack of data architectures, it’s not a lack of business process or ability to do things in the industry or lack of vision,” he said of the cause of that failure in a keynote presentation, Monday. “It’s that the data is incomplete.”
He talked about a “third generation of data” that will be key to prompting lasting clinical transformation that leads to behavior change and better clinical outcomes.
So where are we now? We are solely focused on second-generation data — data sitting in the electronic medical record, claims data.
“It tends to be very specific about a test or test result,” Brailer said, implying the fragmented, episodic nature of the information.
Third-generation data has all the opposite hallmarks of traditional, clinical data: it’s real time, ubiquitous, streaming, physiologic, coming from things all around us.
A Deep-dive Into Specialty Pharma
A specialty drug is a class of prescription medications used to treat complex, chronic or rare medical conditions. Although this classification was originally intended to define the treatment of rare, also termed “orphan” diseases, affecting fewer than 200,000 people in the US, more recently, specialty drugs have emerged as the cornerstone of treatment for chronic and complex diseases such as cancer, autoimmune conditions, diabetes, hepatitis C, and HIV/AIDS.
“It’s data that really surrounds our lives and not just our health,” he said, showing this slide to the audience.
“This is the data that I think is going to become the next vehicle for our ability to take transformation much further,” he said. “If you look through the literature there’s immense amount of data being produced that shows that consumers really do change their behavior when they have relevant data.”
But incorporating this data into the fold of traditional healthcare mores requires answering three rather thorny policy questions:
- Who will own and control this data?
By their very nature, such data sitting on home monitoring devices, sensors, in social media are live wires that healthcare systems do not want to touch for fear of liability.
Brailer believes that patients should control this data.
- What rules will cover this data?
Right now, there are absolutely no rules that are regulating this data unlike the data that’s covered by HIPAA.
“All the other [groups] that collect all the other data are not regulated by any federal laws other than a few privacy rules – state privacy rules particularly in California and New York. But it’s an enormous open question about what is the regulatory schema that protects this data, that brings it all together, makes it useful and doesn’t turn it into a bunch of proprietary things that we cannot build from,” he said.
- Are tech companies going to be able to be good citizens in healthcare and be able to view this from a patient/disease perspective and not just a consumer perspective?
The above slide shows that the data that Brailer describes is housed in tech companies — Facbebook, Twitter and the like. Given the spotlight on these companies with how their platforms have been used this last election cycle, it will be interesting to see how these companies become stewards of the heathcare data sitting on their sites.
Photo: PeopleImages, Getty Images
