WASHINGTON—Federal health officials are stepping up efforts to stop practices they're call “data-blocking” with a new push to collect stories from patients, doctors and others whose health data requests were stymied.
The CMS has created a new e-mail address—[email protected]—for these reports and announced it during the Health Datapalooza conference in Washington Tuesday.
“I want to hear and understand information-blocking practices you've experienced,” acting CMS Administrator Andy Slavitt said at the conference. “Data blocking will not be tolerated.”
Officials plan to act on the reports e-mailed to them, Slavitt said. But the agency has few tools at its disposal to do so.
In April, HHS' Office of the National Coordinator for Health Information Technology released a report indicating widespread business practices by providers and health information vendors that intentionally prevent the easy flow of electronic health records. Practices include charging exorbitant fees to access medical records and simply preventing one company from accessing lines of codes needed to talk to another system.
Karen DeSalvo, national coordinator for health IT, acknowledged during an address at Datapalooza Tuesday that the problem is complicated, so solving it will be complicated, too. “You can't just point your finger at one part of the system,” DeSalvo said. “Everybody's got a hand in it.”
One obstacle, for example, is that health IT vendors say they must protect proprietary standards. In response, the ONC issued an Interoperability Standards Advisory this year.
“We're going to be calling on the private sector to commit to (openness) with us in a more public fashion—to say that (blocking is) not OK,” DeSalvo said.
Several health IT vendors have banded together to make their products interoperable with one another. The not-for-profit CommonWell Health Alliance has snagged every major EHR developer except Epic Systems Corp.
Still, getting a critical mass of the private sector on board will require the business community to give up an important competitive edge.
Craig Brammer previously served on the senior leadership team pushing for open and portable electronic health records at the ONC, and he experienced plenty of pushback from the industry in that job. Brammer now works at the Health Collaborative in Cincinnati, where every major health system in the region collaborates and shares data to improve health outcomes in the community.
“If you're a hospital CEO in the past, you didn't think about how am I going to make it easier for my customers to go to my competitor,” he said. “It makes perfect economic sense to be where we are today.”
Este Geraghty understands the mindset of a corporation torn between openness and a need to protect proprietary data. Geraghty is chief medical officer at Esri, a company that develops geographic information-systems software.
Geraghty manned a booth this week at Datapalooza, showing off data-mapping tools her company has used to improve health outcomes. Her team used data from Children's National Hospital in Washington and other publicly available information to help solve the mystery of patients coming to the hospital with scald burns.
Maps overlaid on patient admission data showed the scalds were coming from a particular part of the city with a high proportion of native Spanish speakers. Neighborhoods were blanketed with Spanish-language brochures urging residents to turn down their water heater settings, and scalding incidents dropped, Geraghty said.
“We think of ourselves, in some ways as the ultimate data-integrator,” Geraghty said. “We are promoters of open data, yet we understand why private companies find value in proprietary data sets.”
Esri shares data, but it also sells about 10,000 data variables, she said.
Getting free-flowing health information can be a challenge even in a country with a national health system, like the United Kingdom.
Tim Kelsey, national director for patients and information at the National Health Service England, told his American colleagues that preventing companies there from claiming patient health data was proprietary required outlawing it. By law, the entire healthcare system must identify patients using a single number, allowing for seamless sharing.
A focus on improving care helped the new, more open standards win acceptance, Kelsey said. “It's fundamental to how we ensure early diagnosis of cancer because we are able to track outcomes and experience of patients across the pathway of their care.”
The CMS also announced during Datapalooza that it will make Medicare data accessible to entrepreneurs that previously was available only to researchers. Slavitt asked innovators not to use the data merely to create cool gizmos for the nation's healthiest and wealthiest but also to help the sickest Americans. “We are aiming directly at shaking up healthcare innovation,” he said.
—Laura Green is a freelance writer based in Washington