Survey: Majority of Patients Don't Know Who Owns Their Data


When it comes to who owns patient data and where that data is stored, confusion is rife.

That's the takeaway from a recent survey of U.S. medical customers conducted by Carta Healthcare, a provider of AI-based data management solutions.

Among the over 1,000 survey participants, 60 percent reported not having ready access to their own patient data. Perhaps more worryingly nearly one in five (17 percent) said they don't know whether they have access to their data or not. 

There's also widespread confusion about who actually owns a given patient's data. According to Carta:

  • 47 percent of respondents think the patient owns their data.
  • 24 percent think the medical facility owns their data. 
  • 16 percent think the patient's doctor owns their data.
  • 13 percent think the data storage provider owns the patient's data.

It's unsurprising that a full two-thirds of patients reported having no idea where their data "goes" after a health appointment, though the same proportion believes that the primary owner of patient data should be the patient themselves.

Notably, respondents expressed some flexibility regarding the actual security of their data. While over three-quarters of respondents named data security as their No. 1 concern, over 70 percent said they would be willing to share their personal health data if it were anonymized.    

Based on the survey's findings, Carta CEO Matt Hollingsworth said, "patients need to have centralized access to their health data to better understand their conditions, improve their experience, and even help treat other patients with similar conditions by sharing their anonymized data."

About the Author

Gladys Rama (@GladysRama3) is the editorial director of Converge360.

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