Data is Power: The State of Consumer Access to and use of Health Care Data

Data is Power: The State of Consumer Access to and use of Health Care Data

 

Access to their own health care data can help patients understand their own health, and, as far as Donna Cryer, moderator of the “Data is Power” breakout session, is concerned, access to health is a civil right. 

 

Technology can empower patients in their own care, but there are several critical issues that must be addressed to ensure the data are timely, accessible, and useful. Said Cryer, “Data is only good when it creates wisdom, and helps us to create better care.”

 

Panelists highlighted some of the latest innovations in patient-oriented data transparency. Matt Daniels, CFO of AHEAD Research, gave a brief demonstration of the online Symcat symptom checker. Symcat incorporates data from over 60 million records to users what patients with similar symptoms actually had. “The information on Symcat is curated and easy to understand—like Wikipedia for health,” said Daniels. Symcat can even recommend whether or not someone should visit the emergency department, urgent care, or schedule a primary care appointment. 

 

One consequence of the movement towards data greater transparency is the plethora of rating organizations and reports that consumers must wade through.  Erica Mobley of The Leapfrog Group gave advice on key hallmarks to look for when examining data reporting. “Follow the three-part transparency checklist: “Does the data show variability? Is it relevant? And, is it unbiased and from a trusted third party source?” said Mobley. 

 

Ellen Makar with the Office of Consumer eHealth at the U.S. Department of Health and Human Services, explained some of the challenges in data portability for consumers. The Office of Consumer eHealth is the developer of the Blue Button initiative, a way for consumers to easily, securely, and quickly access health records electronically. “There has been a debate about standards for data security—it is a bit of a balancing act,” said Makar. Blue Button is slated to launch in 2014. 

 

As a final note, Cryer cautioned, “Don’t forget about patient stories. Data is powerful, but our patient experiences are also a powerful part of the messaging.”