Survey: Nearly 2/3 of Patients Don’t Know Where Their Medical Data is Stored

March 16, 2018
A recent survey of U.S. patients revealed that the majority of respondents have no knowledge as to where their medical data is stored and who has access to it.

A recent survey of U.S. patients revealed that the majority of respondents have no knowledge as to where their medical data is stored and who has access to it.

The research, from start-up ScalaMed, a company known for its mobile prescription system, included 800 patients, with 63 percent of them admitting they have no idea where their data is stored. What’s more, more than 90 percent of respondents said they didn't know if the software their doctor uses to record their medical information sells that data for a profit.

More than a third of respondents often can't remember the names and dosages of their medicines, while almost half have at times forgotten the names of their medicines all together. Waiting periods, access to appropriate healthcare, access to their pharmacy and forgetting to renew prescriptions were also noted as issues when it comes to sticking to their medication plan.

Some 43 percent of respondents said they'd be interested in an app to help manage their prescriptions on their phone, adding that a digital reminder would be most useful. That said, more than half of respondents shared concerns around data security and hacking issues should their prescription records be stored in one central location (supporting a blockchain approach, which decentralizes these records).

In all, almost half of respondents called for a more patient-centric approach to healthcare, adding that they often feel sidelined in the management of their medical records, and almost 80 percent said they should own their own health data.

Of the issues highlighted, 680 respondents said they don't believe the government has a plan to resolve or manage it.

The survey “has shone a spotlight on America's need for a patient-centered approach to medication management, and an urgent need to resolve issues currently faced by the country's healthcare system,” according to the researchers.