Moving towards data-informed personalized health
Data are being generated at an astounding rate, with an estimated 50,000-fold increase by 2020 that will result in 25,000 terabytes of data, said Visha Agrawal, MD, president of Harris Healthcare Solutions, during a panel discussion at Cleveland Clinic’s 2014 Medical Innovation Summit.
Harnessing this rapidly growing data is not just about breaking down information silos, but improving the workflow “so information is in the right context at the right time to the right person,” he said.
Locally managing all the new data being generated is difficult. “We need to adapt from an installed software environment to a cloud-based one to accommodate that future,” Agrawal said.
It’s easy to find silos of data. The question is how to integrate data across the continuum to effectively care for patients, weighed in David Dworaczyk, PhD, director of life sciences Strategic Development at Oracle. “It’s about integrating bigger-scheme data, like clinical data, real-world data, wearable data and social data and trying to incorporate that into lifestyle and treatment plans that [consumers] hopefully comply with,” he said.
With big databases growing, there could be a big need for heavy duty analytics infrastructure. “The more data collected, the more you can connect to others things and you can start getting more insight and intelligence,” said Dworaczyk.
Such insight must move back to the patient, especially those with chronic diseases, to help them shift toward healthier behaviors. “Hopefully by 2020, there is a way to create enough incentives for the individual to do what they know they should be doing in the first place,” he said.
Personalization of data is all about genomics, and patients will need tools to translate genetics and keep track of their health over time, said C. Martin Harris, MD, chief information officer at Cleveland Clinic.
The clinic operates 300 different systems, and there is a big opportunity to integrate the data. “To level the playing field, we need someone to use a combination of interoperability and large-scale analytics to make that happen and maintain a connection with the individual patient going forward.”
Harris recalled Cleveland Clinic’s early days as an adopter of personal health records many years before they became commonplace. “We got a lot of unpleasant calls from people about why we put records online,” he said. A similar transition could occur with the onset of genomics, and building trust and accuracy into the records will help with patient acceptance as the new tools take off. “As we bring value from these data, patients will be the ones who drive the adoption and also drive accuracy as we go forward,” he said.
To build trust at Cleveland Clinic, he said all patients have the ability to view the audit trail on anyone who has accessed their health records. “It’s reassuring to them,” he said.
In terms of accuracy, Cleveland Clinic developed tools for patients to provide their comprehensive family history and report it into their own medical records. “It’s incredibly important. The ability to determine a slightly elevated risk is fundamentally different if six out to 10 people in a family have a full-blown disorder,” Harris said.
Access to and completeness of information are critical to gaining compelling insights that make for a better care experience, said Sean Hogan, vice president of healthcare at IBM. For example, with the progress made in addressing cancer, understanding its manifestation in those who are middle aged has been missed. There is an opportunity to harness data so symptoms often associated with other conditions are recognized as a signal of cancer if that is the case.
With more information and transparency, healthcare will see more engaged consumers, which may be threatening to clinicians. “They will have a much more active role and can play as advocates in their own health,” Hogan said.