Patient-centered data opens door for more individualized care, research

More than ever, patients are having a say in their healthcare--and their input will be an important part of big data collection to create a more "unified story of health and healthcare," according to an article in July's Health Affairs.

Researchers at Duke University looked at the impact of aggregating real-world data right from patients as an alternative to randomized controlled trials. The researchers said directly capturing patient data is growing, with the information being used to help physicians understand the factors that affect health outcomes.

The researchers said that as the use of electronic health records and monitoring devices grows, it opens more doors for data collection and analysis. Full implementation and interoperability of EHRs remains a work in progress for many providers, however.

The article's authors also say that the definition of patient-driven data is evolving. The data can include such information as health history, lifestyle choices, self-reported quality-of-life data and information from home glucose monitoring.

High-quality patient-generated data can have an immediate impact on a patient's healthcare experience, and the data can be used for individual care as well as for research purposes, according to the researchers.

However, they did add that new ways of acquiring and aggregating this information is needed to accomplish those goals--with patient involvement and engagement key.

Big data's impact on healthcare is already expanding--with information being shared across state lines. Seven states recently created the Behavioral Health Data Exchange Consortium in partnership with the Office of the National Coordinator for Health IT and the Substance Abuse and Mental Health Services Administration in order to do just that.

But roadblocks still stand for data sharing, especially when it comes to privacy of patient information. As FierceHealthIT recently reported, a possible crackdown on HIPAA violations is set for happen the next 12 months, according to an Office for Civil Rights official.

To learn more:
- read the article's abstract