JOHNSON CITY, TN –  In June 2011, CareSpark's board of directors voted unanimously to terminate the nonprofit regional health information organization (RHIO), which serves 17 counties in eastern Tennessee and southwestern Virginia.

"It was very devastating," said Jerry Miller, MD, founder of Holston Medical Group and board chairman of CareSpark, of the decision, which was announced last week. The RHIO was burdened with legacy debt and ultimately, he said, "We did not have a sustainable plan."

The RHIO was unable to transition from a grant- and contract-based business model to a subscription-based model. CareSpark's message of health information exchange contributing to better outcomes and a healthier population, and reduced errors, duplicative tests and overall cost resonated with the community, but Miller rhetorically asked: "Where does the money come from to do this?"

Timing, state and national politics, and the complexities of the broken healthcare system contributed to CareSpark’s demise, according to Miller. While CareSpark was in the forefront of health information exchange and "got a lot of buy-in" from businesses, in the current environment the nonprofit has had to deal with the growth and expansion of technology and the emergence of for-profit organizations that are providing connectivity services more cost-efficiently than CareSpark. As participants argued over funding and subscription rates, hospitals declined to participate and revenue streams shrank. As CareSpark's debt grew, the board was faced with the fiduciary and prudent responsibility to cease operations.

Privacy concerns also played a role. "Privacy is always a challenge," Miller said. As the national debate grew over privacy of electronic patient information, so did fears on the local level. Even so, CareSpark has not experienced a data breach with its 1.28 million patient records since its existence, Miller pointed out.
The RHIO is in the process of settling its many contracts. But lest you think CareSpark is going the way of the Santa Barbara County Care Data Exchange, which shuttered its doors in March 2007, think again. The board also voted to be able to revitalize the RHIO "if the opportunity should arise." Given the work that CareSpark had done in the six years since it was established in 2005, the potential has legs.

Consider a number of developments since the announcement was made. CareSpark, which comprised local healthcare systems, medical groups, businesses and community members, including 250-plus volunteers, is a well-known entity in the region. "There is a lot of outcry," Miller said. The big question is whether or not that outcry is enough to mobilize the community to take action. More intriguing, just last week a private company in California contacted Miller to look at investment opportunities and ways to potentially "salvage and save" CareSpark, he said.

At the same time the board of directors voted to cease operations, it demanded that the state of Tennessee get more involved in health information exchange efforts. "The answer to the dilemma of exploding cost is that we have to have a personal health record leading to the electronic medical record that leads to health information exchange, which leads to regional health information organizations," Miller said. "CareSpark was built on this."

While the residents in CareSpark's area have no local HIE, current HIE activity in Tennessee now comprises MidSouth eHealth Alliance out of Memphis, healthcare system West Tennessee Healthcare in Jackson, Middle Tennessee Rural Health Information Network, and startup Middle Tennessee eHealth Connect in South Nashville. While Miller said he is not 100 percent certain that CareSpark would not be involved in some form with these other regional or state efforts, healthcare providers and the local community will likely participate either in a RHIO in Tennessee or Virginia. "We have to have secure, current and sharable health information," he said.

In the meantime, CareSpark continues to take care of its business, which includes tending to the agreements made with some 38 different entities, covering 1.4 million lives, to participate in health information exchange. Its Regional Extension Center contract ended in late May. The Finance and Administration Grant from Health Information Partnership of Tennessee (HIP TN) was terminated in March after CareSpark was unable to submit a sustainability plan.

Its Social Security Administration (SSA) project terminated per "government convenience," as the RHIO could not provide vendor capability to SSA's satisfaction. Miller expressed disappointment over not receiving a Beacon Community grant by the Office of the National Coordinator for Health IT, which would have provided funding to meet the project's goal. The innovation was there, but more importantly, the patient need and the desire to meet patient needs were there. Getting answers back from SSA was "difficult," however, and the final nail in the coffin was its inability to provide the technology in order to participate fully.

The "very successful" Direct Project pilot, in which CareSpark and the Department of Veterans Affairs exchanged secure messaging for mammography referrals, is on hold, Miller said. Lastly, its immunization project is currently under negotiation to determine how to continue to protect the data and determine what to do with the data and the project, he said.

"The vision and mission were outstanding," Miller said. "We had a well-diversified board." Even before CareSpark was established, its forerunner - the Community Health Improvement Project - based in Kingsport, Tenn., was addressing quality and access issues, which were historically problems in the area. At the same time, however, Miller pointed out, "We were a little bit before our time."

What makes the termination particularly heartbreaking is that CareSpark was serving the Appalachian region, which is burdened with multiple health-related issues - a high Medicaid and an older patient population, and high rates of Types 1 and 2 diabetes, obesity and drug abuse. Additionally, the education level is "very, very low," Miller pointed out.

Nevertheless, he remains hopeful. Holston Medical Group implemented its electronic medical record system 14 years ago. "We have seen the value of EMRs," said Miller, who has been a family physician for 43 years and founded Holston Medical Group 34 years ago.

"They say technology takes 17 years to reach the patient - it's true," he said. "I cannot get over that healthcare is local. If I can get the health department, hospitals, medical groups - everybody - together to share, we can get better outcomes and reduce costs."

As Miller and the board of directors determine the ultimate fate of CareSpark, if his passion and urgency have any say, the work accomplished by CareSpark will be carried on. "I'd like to see CareSpark come back to life," Miller said.