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.