Art by Regina Holliday

“I started gathering my data two years ago and virtually no health care providers is ready to provide me my health data in a common standard…[Patients] are basically fighting a battle on multiple fronts. I experience providers who [don’t] have confidence in patients to [use] the data to improve their health.

There are also HIPAA concerns and the fear of “losing” a patient by providing the health data. There is not one single case providers will volunteer to offer me my data until I asked…I want to…turn my health data [into] actionable information to drive the planning of my daily activities so I can [continue] a healthy lifestyle…

It makes sense to me as a patient to have my data and use it to empower myself to know my body through the data. But the response is [often] concerns [with] liability and tampering [with] the data/information if the health record is managed by an individual.”
—Bon S.