By STEVE FINDLAY

Health Datapalooza once again lived up to its reputation as the liveliest and most eclectic health IT confabs of the year.  Energetic and sleek young entrepreneurs mingled with government bureaucrats, academic types, consultants, current and former ONCers, a smattering of providers, app developers, data geeks, and patient advocates at this year’s conference, held in Washington D.C. June 1 to 3 with about 2,000 in attendance.

Although the speeches, app demonstrations, and panel sessions broke little new ground, that’s not the point.  The point is to maintain the excitement, optimism and commitment, to update the vision, showcase the creativity, and extol the virtues and power of data-driven care improvement.  Perhaps not as the solution to all the health system’s woes, but a fair share of them.

I didn’t discern a dominant theme, but amid the ra-ra and fun there was a good amount of hand-wringing around these issues:

1. Failure to engage the vast majority of consumers/patients in their own care—with data, medical records and Yelp reviews in hand.  Some two-thirds of providers attesting to stage 2 meaningful use reported that not a single patient had requested their data or records.   

2. Failure to make health data as actionable as baseball did, a la “Moneyball” 

3. Continued uncertainty (and lack of good data) on whether data-driven improvements in care are (a) reducing unnecessary care and (b) saving any money

4. The ever-widening gap between federal law and actual data security and privacy protection, with HIPAA no longer sufficient to cover the health data waterfront. 

5. The painfully slow progress to interoperability—a failure of government and business, separate and together.   

6. The paucity of good data on the outcomes of care, as assessed by meaningful provider performance/quality-of-care measures.  As elucidated via a trite but true metaphor by Paul Wallace, “we keep looking under the lamppost because that’s where the light is….we’re going to need much brighter bulbs…or a new approach.”   

7. The absence of a secure “killer app” that gives consumers access to their medical data and records.     

Praise for the Obama Administration’s continued commitment to health data transparency is obligatory at Datapalooza—and deserved.  Timed to the conference, CMS on June 1 released 2013 data on Medicare bills from hospitals and doctors, following its’ first-ever release on 2012 doctor payments last year.  A tuned-in media poured over the data and reported: 

A 10% rise between 2011 and 2013 in hospital “charge master” (or list) prices for a batch of common procedures—although Medicare wasn’t paying hospitals any more for those procedures in 2013 than 2011.   

Cancer docs reap the highest payments among physicians, but much of that is due to the cost of drugs they administer in their offices or clinics.  At issue and the reason Medicare split out the drug cost data this time:  In Part B, Medicare adds a 6% overhead fee to docs who administer drugs in their office, with the 6% pegged to overall billing for drugs.  That potently encourages docs to buy the highest cost drugs.  Experts concur the data is bringing this issue into sharp relief as the prices for many specialty drugs steadily rise.   

The top 1% of providers billing Medicare received 17.5% of payments in 2013, up from 16.6% in 2012. 

CMS acting head Andy Slavitt received a hearty round of applause when he announced that the agency would this year begin to give private sector organizations access to Medicare claims data.  Access for commercial use has been prohibited.  Slavitt said companies will be able to meld Medicare data with data from other sources as well—critical to the latest “big data” movement that seeks to yield fresh insights from creatively combined data.   

Slavitt also announced that CMS will begin this year updating Medicare data on a quarterly basis, rather than annually.  And all data submitted to CMS will soon have to be in a machine-readable format, he said.    

Two surveys came out during Datapalooza.  In one, of around 2,000 adults, ONC reported that 70% support the electronic transmission of their records and data for medical purposes, but the same percentage had concerns about privacy and security.  The survey was conducted in 2013.  The findings are unchanged from recent year’s surveys, signaling a continued high level of angst around medical data.    

More upbeat, researchers at Northwestern University surveyed 1,156 teenagers aged 13 to 18 in 2014, finding that 84% of them had searched for medical information online and 21% had downloaded a mobile health app; 36% that did so said the app had changed their behavior.  Promising, to be sure, because as we all know it’s that generation that’s going to really live the health data dream.    

Colleagues from Consumer Reports, AcademyHealth, and I released this guide to health data for consumers at Datapalooza. 

Next year’s Datapalooza conference is in July 2016, also in the Washington area. 

Steven Findlay is an independent journalist and editor who writes about medicine and health care policy and technology.