Helping Cancer Patients Access their Own Health Data

For many cancer patients, the ability to access one’s own medical records can aid their treatment decisions, or allow them to donate their personal data for research that could help other patients. But these records can be difficult to obtain and sort through. Here, our Curious Dr. George asks Deven McGraw, Chief Regulatory Officer at Ciitizen, how her company helps patients access and organize their own health information.

McGraw can be reached at deven@ciitizen.com.

Curious Dr. George: The medical records of an individual American patient are both precious and private. Access to them is of great importance for medical decision making. The Health Insurance Portability and Accountability Act of 1996 (HIPAA) specifies ownership and conditions for sharing that information. How does your company facilitate both privacy and proper access? How do you measure success?

Deven McGraw: Medical records are created by providers of health care (for example, doctors, hospitals, clinical laboratories, and pharmacies). Providers use these records for multiple purposes, but most providers are subject to federal privacy and security rules governing how they use and disclose these records. HIPAA allows providers to use and disclose records for treatment, to be paid, for reporting to public health, and for research, to name just a few of HIPAA’s rules.

But HIPAA also provides patients with rights regarding these records, including the right to access and receive a copy of all of the health information collected or generated about you by your health care providers. For example, you have the right to copies of your images, lists of medications, lab test results (and the underlying data that informed the result, including for genomic testing), diagnoses, and the notes clinical providers record about your care. Most patients today have “portals” that give you access to some of your medical records, but what you have a right to receive under HIPAA is much more than what is typically available in portals.

Patients have the right to get this information:

  • Within 30 days of receipt of your request.
  • In the form and format you want, as long as the provider can readily produce it in this format (this means you can get digital copies of electronic medical records).
  • At zero or very low cost (providers can only charge you for the amount it takes them to make the copy).

You can even have records emailed to you if that’s what you want (and you are okay with any security risks associated with sending by regular email).

Although the HIPAA right of access has been a legal requirement for more than 20 years, it can be difficult for patients to get their records. In response, Ciitizen developed a Patient Record Scorecard rating how providers respond to patient requests under HIPAA for copies of their records.

Ciitizen was founded to make sure patients—beginning with cancer patients—could get all of their medical records in a private and secure personal health record. Ciitizen also organizes these records so cancer patients can: use them to seek the best possible care (for example, getting a treatment recommendation or second opinion, or determining eligibility for a clinical trial), share them with a caregiver, and donate them for research.

How do we measure success? When cancer patients have all of their relevant medical information at their fingertips and are able to drive change—for themselves and for others. Although Ciitizen is not yet open to the public, we are onboarding cancer patients. Come see us at www.ciitizen.com.

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