Health information exchange executives spend a lot of time investigating possible sources of revenue to guarantee their sustainability beyond the era of federal grants. Could providing a patient portal that crosses health system boundaries be one of the value-added services they provide? Patients who see eight to 10 providers a year do not want to create their own records by cobbling together information from multiple health systems.

Health IT leaders in Indiana who have been working on patient engagement believe HIEs can play a valuable role.

With a challenge grant from the Office of the National Coordinator for Health IT, the state has worked with its five HIEs and an Indiana-based personal health record vendor, NoMoreClipboard (based in Fort Wayne), to launch a dozen pilot projects involving multiple use cases, such as patients with different chronic diseases.

Speaking at a July 16 webinar put on by the National eHealth Collaborative, Andrew VanZee,statewide health IT director for the state of Indiana, said the effort has brought many stakeholders to the table to leverage the funds that ONC provided. After two years of work, he said, the participants have a clear idea why ONC called it a challenge grant. “There were some significant challenges along the way,” VanZee said.  “We hope that based on what we learned, other states can avoid the pitfalls and accelerate their initiatives going forward.” In Indiana, this project has spun off into other consumer engagement efforts in the state, including a project by the state Department of Health to make vaccination records available to patients.

Jeff Donnell, president of NoMoreClipboard, said that although HIEs have gotten good at provider-to-provider exchange, it has been rare so far to have the patient as part of the equation.

But the HIEs have already done the hard work of aggregating data from multiple providers, Donnell stressed. This could save patients from the tedious effort of trying to get data from all their different doctors and hospitals.

“Patients are begging for easier ways to manage their health information,” he said. HIEs can offer services to providers looking for alternatives to tethered patient portals offered by EHR vendors. HIEs can add value by providing a single place to go, and this could provide them with a new revenue stream, he said. They can help providers meet meaningful use requirements involving patient engagement and attract interest from new stakeholders, including employers interested in their employees using PHRs.

NoMoreClipboard

Talking about lessons learned from the pilots in Indiana, Donnell said the first is crawl, walk, run. “The tendency is to get bogged down in complexity,” he said. “We suggest focusing on high-value activities first such as helping providers meet meaningful use requirements. At the same time, you can think ahead of how the HIE can support ACOs and patient-centered medical homes and chronic disease management efforts. Get patients used to accessing their data,” he said. “Once data starts to flow, it won’t take long for them to tell you what they want next. Be careful not to invest in things they won’t find valuable.”

Donnell advises others not to underestimate the heavy lifting involved in policy development work before data is shared with patients. For instance, data use agreements for the HIE were crafted before the participants contemplated including patients. “It required going back to those agreements and the work is not trivial,” he said. In some cases it required renegotiating with each individual provider entity and adding amendments and agreements, which took months.

Participants have to decide what information they are going to share and which they will not.

The Indiana HIEs had lively discussions with stakeholders about what would be shared: lab results? Information on STDs? Abnormal results? Radiology? Physician notes?

“These are thorny issues that takes a fair amount of time to unwind,” Donnell said. Providers hold widely different beliefs about sharing data. “In this day and age, some providers still operate in blissful ignorance about HIPAA requirements and believe they have no legal obligation to share information with patients,” he said.

Jason Buckner is vice president of operations for HealthBridge, which provides HIE connectivity for the greater Cincinnati tri-state area and five other HIEs. His organization delivers 3 million to 5 million clinical messages a month and connects more than 30 hospitals and 800 physician practices.

He said at first the health systems were apprehensive about joining the PHR project, but full support was gained after several discussions. “They were wondering if they really wanted to send data to PHRs they don’t have control over,” Buckner said. “Those conversations were not insignificant or quick.”

Many of the health systems already had patient portals and had defined the business logic, timing and software filtering about sharing results. “Of course, none were the same,” Buckner said. “We had to account for different rules for every system that fed data into the HIE. Our programmers would say that was the most difficult component. There were a lot of architectural considerations to support rules and business logic components.”

Another challenge was dealing with a variety of legal requirements that are different in the three states that HealthBridge serves around issues such as sharing health data of minors.

NoMoreClipboard’s Donnell said the key thing that patients appreciate is getting an account already pre-populated with most of their health data. “They don’t have to start from ground zero in creating one by trying to get data from multiple providers.” Initial surveys of providers at pilot sites suggest that patients with PHRs are more engaged in their care, and more compliant with their medications. “The nature of the conversations is changing,” he said. People tend to come to doctors’ appointments better prepared and with good questions.

Stakeholder education is imperative, Donnell said. If an HIE’s goal is data sharing with patients two years from now, they should get started now, he added. “There is immense danger in underestimating how long the process can take.”