State Health Data Exchanges Face Common Challenges

With projects underway in every state to develop and expand health information exchanges, a handful of common themes--most notably consumer and healthcare provider buy-in and long term sustainability--are challenges for many of these efforts.

Health information exchanges in New York, Oregon and Texas are in various stages of development, but each is facing similar issues when it comes to figuring out long-term sustainability and buy-in from consumers and healthcare providers, according to leaders of those efforts during a virtual roundtable discussion on Tuesday sponsored by Symantec.

Buy-in from healthcare providers is vital for sustainability, since healthcare providers are needed as data sources as well as possible paying subscribers of the health information exchanges in the future, especially after seed money, grants, government awards and other third-party funding for early development and expansion of the HIEs run out.

Buy-in from healthcare providers is also important in order to reach critical mass in the percentage of doctors, hospitals and other clinicians in a community using and contributing to the data sharing, which bolsters the value of the health information exchange.

In New York State there are nearly a dozen of regional health information exchanges that have been launched in recent years, including the Western New York Clinical Information Exchange, said its director of operations Steve Allen. The vision is for most of those individual regional exchanges to collaborate for statewide data sharing, but the hope is that they'll each also get to the point "where each will stand on its own and not rely on grants" to continue, he said.

Currently, the Western NY Clinical Exchange has about 860 of 4,500 healthcare providers in eight counties participating. "We need to get to critical mass," he said. Fortunately, participation "is going up quickly and there's lots of interest," he said.

Critical mass is important because healthcare providers who use the exchange want to feel assured that pertinent data is available about their patients. The more providers that use and contribute to an exchange, the bigger the pool of data and the greater the value is to clinicians and patients in terms avoiding medical mistakes and improving quality of care.

"You can't equate stimulus money with value," said Manfred Sternberg, chair of the Texas Health Services Authority Board, which is coordinating Texas' statewide HIE effort. While Texas has received about $30 million in stimulus and other funding for its HIE, the effort will likely require lot more funding--and support from stakeholders--to grow and sustain the effort.

That's why it's important for health information exchanges to show the value it can provide to clinicians and patients, including eliminating the need for redundant "clip board" paperwork, he said.

Health information exchanges "will just be boondoggles without value after the stimulus money is gone," he said.

Key in building that value is also getting buy-in from consumers so that they permit their health data to be shared among healthcare providers via the exchanges, said Carol Robinson, State Health IT Coordinator for Oregon State Health Information Technology Oversight Council.

Consumers are worried about the security and privacy of their health data. So in order to get consumers to consent to the electronic sharing of their data, patients need to know that their data is secure but also understand how the access of their medical information by providers can help improve the quality of care they receive.

"The goal is to improve health," said Robinson. "Data is power. Patient safety can improve by understanding health data," she said.

"The value [of health information exchanges] is improved outcomes," she said. "Communication is at the heart of this," she said. Online banking "seemed scary a long time ago," but electronic banking is a frequent activity "for most of us," she said.

Rigorous security is important for health information exchanges, but when communicating with patients, "speak of the value rather than the fear," she said.