By Adam Wilmoth
The Oklahoman, Oklahoma City
WWR Article Summary (tl;dr) Over the past 19 years, Debi Willis’s “PatientLink System” has evolved to where medical information can be accessed by smartphones, tablets and personal computers at home before patients arrive at the doctor’s office. She developed the platform after frustrations with transferring information during her own cancer scare.
The Oklahoman, Oklahoma City
After making a career of collecting medical information, a cancer diagnosis made the effort even more personal for Oklahoma City entrepreneur Debi Willis.
Founded in 1999, Willis’ PatientLink Enterprises Inc. helps medical offices more easily digitize and use the paperwork patients fill out before appointments. The inspiration for her second major product followed from her own experiences with doctors.
“I realized we needed something for patients to gather our data,” she said. “I just got diagnosed with cancer. I didn’t know what was going to happen to me. I had to stand in doctors’ offices to get that information, and I even got chastised by one doctor who said I could only get two copies even though more than two doctors needed that information.”
Such information is more than just a convenience, she said.
“Had I not been persistent with my doctors, I would be dead now,” Willis said. “They told me I was fine, but my journey showed me that we as patients need to be more involved.”
Willis and her company have spent much of the past six years developing MyLinks, a system designed to collect records from multiple doctors and use it to create reports that can be useful to both patients and their medical providers.
“I had spent a decade focused on moving data from patients to the doctor’s office, and it felt like it was time to move data from the doctors back to the patients so they could take better care of themselves,” Willis said.
The process is complicated because doctors and hospitals have used various, incompatible systems. Federal law, however, requires medical providers by January 2019 to use compatible formats.
PatientLink has worked closely with government regulators throughout the process. The U.S. Department of Health and Human Services and its Office of the National Coordinator for Health Information Technology have been encouraging medical offices to allow better access to patient data. The office last year recognized PatientLink and its MyLinks system as the winner of its consumer health data aggregation challenge.
“The Consumer Health Data Aggregator Challenge asked submitters to address a need that many consumers have today — the ability to easily and electronically access and securely integrate their health data from different health care providers using a variety of different health IT systems,” the health department said in a statement.
Willis said she expects MyLinks to be available to the public sometime this year. Some medical offices already are compatible with the system, and the rest are expected to update their systems by the end of the year.
While MyLinks is designed to primarily to benefit health care patients, Willis said she also hopes it will boost medical research.
“A focus of MyLinks for me is that not only will people be able to download and understand their information, but they will be able to share it,” she said. “There are so many diseases where we don’t understand how they are started, like autism, multiple sclerosis and Parkinson’s. One reason I believe we can’t find a cure is because the data is sliced all over the place.
“Patients are the only ones with access to the complete picture. Being able to opt in to share the data will help find cures faster.”
MyLinks users can opt into the data-sharing program, but no information is used without permission, Willis said. The research components also have personal significance for Willis, whose mother has Alzheimer’s disease.
“I was at a conference several years ago and was surprised to see how many of us had moms with Alzheimer’s,” she said. “All of us acknowledged we would be happy to share our data and answer questions to help figure out what’s happening and to see if there’s a way to turn it back and get our moms back.”
While Willis and her 15 employees at PatientLink Enterprises work to roll out MyLinks, they also continue to focus on their flagship product.
Willis developed the PatientLink system beginning in 1999 when a client asked her to help the office workers save time collecting patient data. The system began with a bubble form similar to a standardized test and a scanner that imported the data to a computer where it could be translated into a format preferred by doctors.
Over the past 19 years, the system has evolved to where it can be accessed by smartphones, tablets and personal computers at home before patients arrive at the doctor office.
Willis said she expects the PatientLink system to continue to evolve with technology and doctor and patient needs.
“The PatientLink format is a great path for adding other things like more educational materials and the ability for patients to learn about different responses while they’re filling out information for a provider,” she said.
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