Fishers neighbors create medical record app

Jen Ganly carried her purple backpack everywhere. Inside it, she kept every medical record from every doctor’s visit with her 3-year-old son, Gabe.

Whenever she and Gabe visited a physician, Ganly, a Westfield resident, placed a new document in the backpack with all the rest. She knew the details of her son’s medical conditions by heart, but she never left home without her backpack.

“I kind of always kept it on me, and it was my security blanket because I never knew when I was going to need it,” she said. “So, I carried it with me to work every day. I just wanted to never not have it with me, so everywhere I went, it was with me.”

Last year, Ganly met Jean Ross, a former aging-care nurse who was testing an app called Primary Record, which allows families and other caregivers to organize and share medical information with one another and with doctors from their computer or phone.

Ross spent weeks digitizing Gabe’s paper records and connecting accounts from different hospital network portals. Now, Ganly said, she can leave her backpack at home.

“It’s made it so much easier because everything is in one place,” she said. “I just pull up the app, and it’s there.”

Ross began thinking about the need to make medical records easier to access when her job had her coordinating care for adults living with dementia.

During her career, Ross learned that doctors and nurses look to family members to provide an accurate health story. They want to know medications, health conditions and doctors’ names.

Increasingly, she saw people who did not have a good system for understanding their loved one’s situation, so she decided to try to simplify the process.

“They just look at the family to be able to relay, and when they can, [the patients] get great care,” Ross said. “When they can’t, there’s delays and all kinds of issues that emerge.”

When the pandemic began, Ross’ job came to a halt. Her neighbor on her Fishers cul-de-sac, Jim McIntosh, formerly a senior project manager at ExactTarget, left the corporate world at the same time to be a caregiver for his daughter, Mia, who has Down syndrome, and his mother, who was in the late stages of chronic obstructive pulmonary disease.

“I said, ‘You know what? I’m looking to do something more meaningful,’” McIntosh said.

With help from Ross’ husband, Chris—an emergency room doctor with Community Health Network—Ross and McIntosh began developing Primary Record in November 2020.

The app went live late last year on desktop and mobile browsers, and it will be available in app stores later this year. It’s free for now; it will eventually cost $10 per month.

For Ross, her focus for Primary Record is on the idea of what can happen to health care if it is easy and secure for families to have one place for information. A virtual assistant on Primary Record can search and answer questions for users.

“What we’re doing is trying to arm families, because they’re already being leaned on so much, but with tools that quickly help tell their story when they’re on the hook to share it,” she said.

Dr. Shaun Grannis, vice president of data and analytics at the Regenstrief Institute in Indianapolis, said tools like Primary Record are coming on the market at the same time as emerging artificial intelligence methods, which can help people understand complex medical situations.

Grannis predicted more changes in the tools patients and doctors will use to help them understand data and maximize its use.

“This is a part of the larger ecosystem of the explosion in health care, data and health care AI,” he said. “And I think companies like Primary Record are really at the beginning leading edge of this new wave of exciting possibility.”

Making connections

Getting Primary Record off the ground and onto people’s computers and phones meant Ross needed to network, make connections and raise money.

She said her most important navigator was Dan Drexler, regional director of the Central Indiana Small Business Development Center at Butler University’s Lacy School of Business.

Drexler helped guide Ross through the process of applying for grants and seeking venture capital funds. He said Ross and McIntosh have taken advantage of advice, market research and industry information programming.

“They’ve really separated themselves in that respect and have worked to build bridges and partnerships across all organizations, public and private, just to kind of move their business forward,” he said.

In December, Indianapolis-based venture capital fund Boomerang Ventures, with Clarksville-based Render Capital, announced a $1 million investment in Primary Record.

Render Capital Executive Director Patrick Henshaw said he used Primary Record before the investment and put his family on the app. As a user, he called Primary Record “an incredible friction reducer.”

“It’s almost like a venture capital dad joke,” he said. “‘An ex-ExactTarget and Salesforce [senior project manager], an aging-care nurse and an ER doc walk into a bar.’ Like, how are you not going to make that investment?”

In April, the Indiana Economic Development Corp. recognized Primary Record as its Small Business of the Year.

The IU Angel Network, an investment vehicle of IU Ventures, which supports early-stage companies affiliated with Indiana University, invested $65,000 in Primary Record.

Jason Whitney, executive director of the IU Angel Network, said Primary Record’s leaders demonstrated that the company was addressing a need for many families.

“The amount of passion that comes from [Ross] when she talks about the users of their platform came out in actual tears that day during the presentation,” Whitney said. “And that’s compelling to any investor, right?”

Decades of changes

Several legislative and regulatory changes over nearly 30 years made the creation of Primary Record possible.

The Health Insurance Portability and Accountability Act of 1996, or HIPAA, changed the way medical information can be shared and transferred. It also revised the privacy rules around personal medical information.

In 2009, Congress passed the HITECH Act, which funneled millions of dollars to doctors and health care systems to start or expand their use of electronic health records (EHRs). In central Indiana, hospital systems use EHR vendors, such as Allscripts (Ascension St. Vincent), Cerner (IU Health) and Epic Systems (Community Health Network, Eskenazi Health and Franciscan Health).

Another significant development came in 2016 when the 21st Century Cures Act gave families the right to access and download clinical medical information from patient portals and EHR vendors, enabling the service Primary Record provides. The 21st Cures Act prevented hospital networks from blocking patients from viewing their records.

“I knew that there was going to be a shift and change in the way information is going to flow,” Ross said about the 21st Century Cures Act. “Because this is such a new law, it’s been interesting to see what kind of health records have jumped on board, and how well they’re sharing information.”

Also, this year, the Office of the National Coordinator for Health Information Technology, a division of the U.S. Department of Health and Human Services, launched a nationwide health data exchange called the Trusted Exchange Framework and Common Agreement, or TEFCA.

TEFCA allows patients, doctors, providers and insurers to access and share medical information. Grannis said the 21st Century Cures Act and TEFCA complement each other.

“It’s important to think of 21st Century Cures alongside TEFCA in terms of how data will be mobilized in a standardized way,” Grannis said. “I think that the ecosystem where patients carry around their health care data is going to go through evolution.”

Greater usage

The Office of the National Coordinator for Health Information Technology reported last year that in 2020, 24% of U.S. adults were offered and accessed their online medical records or patient portals. That increased to three in five adults by 2022. Also, 54% of patients who were offered access to their online records used them at least three times during 2022, compared with 38% in 2020 and 26% in 2017.

While patient portals and EHR vendors are subject to HIPAA regulations, once data is placed in Primary Record or any other app, such as Apple Health, it is regulated by the Federal Trade Commission.

“You’re trusting these organizations to maintain a high degree of privacy, security and confidentiality,” Grannis said. “I have no doubt that Primary Record is doing that, but I think there are some issues that I think will be worked out as these early days progress.”

McIntosh said Primary Record builds upon what started with the 21st Century Cures Act because it provides organization for what otherwise would be a “a raw data dump” of medical information from different patient portals and EHR vendors. Getting the systems to talk to one another is what Primary Record does.

“The data dump is great; you got access, but there needed to be much more,” he said. “There needed to be the ability for families to update what is accurate, at least for their side of things.”

Community Health Network Chief Transformation Officer Dr. Patrick McGill said one of the biggest changes he has seen in his more than 20-year career is the requirement that patients be able to access information—specifically lab, pathology, imaging and testing results.

“It’s been a rapid change, but it’s all been for the better,” McGill said. “I think there’s this notion of having the patient as a member of the care team, and that’s good. That’s good all the way around. It’s good for patients, it’s good for providers, it’s good for the health system in general.”

McGill said the biggest challenge Primary Record will face is that it’s going up against large EHR vendors like Cerner and Epic. Epic operates MyChart, which organizes information about health history, medications, appointments and test results.

“Those two control the dominant market share, so you’re trying to compete with the big gorilla [EHR] companies,” he said. “I think that’s probably the biggest headwind that some of these startup apps are going to have … they’re completely dependent on the [EHRs] giving them access to the information.”

However, Ross said it is a “very big misconception” that Primary Record’s success depends on EHRs sharing data. EHRs can face fines of up to $1 million if the U.S. Department of Health and Human Services’ Office of Inspector General determines a company committed information blocking.

“The truth is our success depends on EHRs following the laws laid out in the 21st Century Cures Act,” she said. “We plan to be a big voice in this space next year for those who are not complying and allowing families to exercise their right of patient access.”•