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Health Data Portability: Who Owns Your Health Data?

Healthcare portals are a very common feature of the service provided by most clinics and hospitals. However, the convenience of being able to easily access your health data remains a challenge for many patients. This article touches on the importance of health data portability and some of the challenges associated with it.

Accessing Your Health Data

Knowledge of personal health can influence our adherence to recommended treatment, self-monitor health, and maybe even fix any errors that may be in your health records. And legally, the Health Insurance Portability and Accountability Act of 1996 (HIPAA), gives individuals the right to access and receive a copy of their health information from their health care provider and insurance. This is vital to the mantra of “patient-centered care”.

As a patient, you have the right to access:

  • Your medical and billing records at your doctor’s office
  • Enrollment, payment, claims adjudication (coverage decision by your health plan), and case/medical management records that are with your health plan
  • Any other relevant records that are used to make decisions

A survey conducted by The Pew Charitable Trusts in summer 2020 found that patients are very keen to access their personal health information digitally:

  • 81% want increased access to health information for both patients and doctors
  • >65% of respondents want their doctor to share information on advanced care plans/end-of-life preferences, images (x-ray, MRI etc.), and family medical history
  • There is demand for increased access and improved protection of the digital health data
  • To overcome the biggest challenge of different systems being able to accurately match electronic health records to the right patients, a majority of patients were ready to be fingerprinted or assigned a unique ID code

Challenges With Access and Data Privacy

One challenge with electronic health records is the inclusion of patient imaging data. Diagnostic images—x-rays, MRI, CT scan—are key to disease diagnosis, developing a treatment plan, and understanding whether an existing treatment has worked. However, integrating them into the patient’s digital health record is not as common. CDs (compact discs) are the primary mode of diagnostic image sharing and transfer, and patients have to carry the images themselves when they need to share them with a physician. This process has its own challenges:

  • The CD may have parts that are unreadable
  • The CD may be password protected
  • Difference in processing between clinics would extend the time it takes to integrate the imaging data into the clinic/hospital’s workflow

Bottomline: the patient may face delays with receiving clinical care.

Back to the Pew survey results: 62% of respondents were concerned with the privacy of their health data that they could access on smartphones, tablets, and computers by using apps, especially after they found out that federal privacy protections may not protect those data. Health apps make digital data access easy—they provide a platform for patients/caregivers to bring together health data from various healthcare providers. However, policy changes are necessary to ensure the data remain protected and that these apps fall under the scope of HIPAA privacy.  

Would you like to share your data portability experience? Please send us an email: jsliney@patientsrising.com/.


Surabhi Dangi-Garimella, Ph.D. is a biologist who provides writing and strategic support to non-profit groups via her consultancy, SDG AdvoHealth, LLC.

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Surabhi Dangi Garamella

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