Patient Data Access News

Patient Preferences Key to HIE Patient Access to Health Data

At HealthlinkNY, providing patient access to health data means incorporating the patient as another HIE user and meeting their preferences.

By Sara Heath

- Although some healthcare professionals and federal policymakers tout the importance of patient portals and meeting view, download, and transmit benchmarks, these methods may fall short of effectively boosting patient access to health data.


According to Christina Galanis, President and CEO of HealthlinkNY, patient portals and VDT functions fail to have success because they put the onus on patients. When patients have to take the initiative, it presents roadblocks to true and robust engagement.

“View download, and transmit taken as a whole says that the patient is going to view it, download it into something, read it in some sort of viewer, and then they are going to send it somewhere or print it or put it on a drive and deliver it to their doctor,” Galanis said in an interview with “Does that really happen? I don’t know. From what I’m hearing, no.”

Part of the issue, Galanis said, is that patient portals and VDT functions aren’t all too useful for the average patient. While chronically ill patients may be compelled to check their patient portals on a regular basis, well patients have little reason to be regular users.

HealthlinkNY, an expansive health information exchange covering 13 counties in New York, has set out to determine the best possible way to engage all of its patients and offer them convenient data access as a result. According to Galanis, that means moving away from the patient portal and closer to smartphones.

“Expecting a patient to log into a portal is not the direction we’re going in. It’s nice to have it, but we’re going more towards targeting smartphones,” she explained.

“Giving [patients] information that allows them in a methodic fashion to get bits of information that is immediate and current directly to the phone, not requiring them to go log in, educates and enables the patient to involve them and engage them in their care.”

Galanis and her team are also concerned with determining the kind of information patients want to access. In recent HealthlinkNY studies, the organization found that patients want to see their lab results and want to see their data in graphical representations.

The HIE is looking to deliver that data to patients via service lines that work for them — just as they do for providers.

“Patients need to be treated with the services we give providers from an HIE perspective,” Galanis explained.

“You have doctors, you have nurses, you have radiologists, and they all have different information needs. The patient is just another one of those that you treat a little differently in terms of not being clinical or not understanding clinical terminology.”

For Galanis, a patient-centered HIE service delivers the health data that patients want directly to them. Instead of making a patient continuously check their patient portal to see if their strep throat labs are back, they might receive a push notification on their smartphone or ask Siri for updates.

Beyond patient-facing HIE functions, HealthlinkNY is working to improve patient education. Simply presenting the tools for accessing patient data is not enough. HIEs need to explain to patients the importance of this data access and how it can help improve their health.

Ideally, this kind of knowledge will prompt patients to contribute their data to the HIE. As an opt-in HIE, this has been a critical task for HealthlinkNY.

“That’s a huge education and HIE undertaking,” Galanis explained. “We’ve produced videos, we’ve done in-services going and meeting with different clinical organizations. We do a lot in terms of community outreach and education about giving consent to their providers.”

According to Galanis, the HIE industry will be facing many opportunities — and challenges — going forward. However, the overarching goal of integrating the patient as a key member of the care team through robust data access will likely continue to prevail.

“Increasingly, people are being more inclusive about patients not just pushing information toward them but getting them to take action and interact with all of the care coordination,” she concluded.

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