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In April 2017, Heather Kennedy was diagnosed with thyroid cancer.

“I was seeing five different physicians, and each had their own method of sharing lab results,” says the BlueCross enterprise architect. “I had to log in to so many portals, and my information was always in some scaled chart that was hard to understand — and I look at these types of things for a living.”

“I thought, ‘How hard would this be for someone with no health care background to navigate?’”

Not long after, that personal experience influenced her work toward heath data sharing implementation for our members.

Leading the charge

Privacy and protection of personal health information are paramount. Our members care about privacy and expect us to protect their information. They also want the ability to share it with whom they choose.

Heather’s job is to ensure we are working on industry standards for data exchange so that members have access to their own data.

“Enterprise architects look at ways to make BlueCross as a whole more efficient through the use of technology,” she says. “In other words, we’re always moving forward.”

Heather also understands why many might be skeptical about having their personal health data more readily available.

“For our members who see their doctor once a year and are in good health, accessibility to their health information and the control they have over sharing it may seem unnecessary,” she says. “But for members who have a large, continuous care team, getting all of their information from all of their physicians in one place is invaluable.”

Firsthand experience

When Heather learned she had thyroid cancer, the last thing she needed was more anxiety — not only over lab results, but how she could access them.

“With five doctors, I had so many tests,” she says. “I was constantly wondering, ‘Is something else wrong?’ and praying there were doctor’s notes. Instead, you’re waiting on the doctor to call and tell you something, and when you go between these doctors, they often run duplicate labs and tests and get duplicate results. And the problem with that is they can have different insights depending on the day.”

This lack of communication and accessible data between providers resulted in Heather undergoing three MRIs in addition to a biopsy before she was fully diagnosed. Two MRIs came back with the cancer clearly visible, but the final one did not. Heather happened to involuntarily swallow during that scan, which affected the image.

“Afterward, that doctor just wanted to do exploratory surgery,” Heather says. “Fortunately, I already had the information from my endocrinologist on my phone readily available. That made me confident enough to say, ‘I’ve already been cut open. I had a biopsy. We’re doing this removal.’”

Heather underwent thyroid removal surgery in 2018. Her cancer was caught early, and though now in remission, she believes her treatment would have gone far more smoothly had all of her providers had access to her health data in one place.

She also believes sharing her story shows the value in shared data for our members. She does not want anyone else to experience similar struggles.

“I’m not the only person who’s experienced varying lab results between physicians,” she says. “Easier data sharing with the care team helps prevent these duplicate procedures, it helps with health care costs,  and it helps with your well-being, mentally and physically.”

“It’s really important to have access to your own data so that you can be your own health advocate.”

On the horizon

In February 2019, the Centers for Medicare and Medicaid Services (CMS) released a draft rule to help standardize exchange of digital health data and give patients the ability to not only access their data electronically, but have that data shared between their insurer and care team.

The proposed rule would enable better understanding, tracking and management of health care needs — as well as less burden and more convenience for members, as they have portable, real-time access to their own health data, from claims updates to medication adherence reminders.

Recently, Heather and Nick Coussoule, senior vice president and chief information officer at BlueCross, visited Washington, D.C., as part of a White House Office of American Innovation-sponsored developers conference to discuss and advocate for opportunities under the proposed policy.

Many attendees, including those from BlueCross, pledged publicly to work on making health care data more available for Medicare, Medicaid and Marketplace members, and discussed how different organizations can work together to keep patients at the center of health data technology. 

For Heather, the event only strengthened her resolve to help members not have the same roller-coaster ride of a health care journey that she experienced.

“At BlueCross, we believe our members should have access to their own data,” she says. “We are working to put that power in their hands.”