Reporting Possible Cases of Information Blocking – a Primer for Patients

Calendar Icon September 16, 2021
Reading Time Icon Read Time: 2 min
By Ciitizen

The right of patients to get their complete medical records from all of the places where they’ve received care is critical to enabling them to seek the best possible care and to advance clinical research. Ciitizen strongly supports this right and is working to ease the patient’s burden of requesting and obtaining these records.  

It is now more important than ever that patients understand their rights to their health information – and what they can do when they face obstacles to accessing their medical records. 

Beginning in 2019, with the launch of the Patient Record Scorecard, which evaluates how well health care providers comply with the HIPAA regulations to share records with patients, Ciitizen is working tirelessly to educate and advocate for the right of patients to get their health information. We conduct free webinars for health care providers to help them improve their compliance with patients’ rights to get copies of their health information under HIPAA and are partnering with leading organizations such as OpenNotes to share updates.

For a long time, HIPAA was the only federal law that prioritized patient access to their health information. But in 2016, Congress enacted the 21st Century Cures Act and prohibited health care providers, electronic medical record vendors, and health information exchanges from “blocking” or interfering with the sharing of electronic health information, including when copies of this data are requested by patients. These “information blocking” rules went into effect on April 5, 2021.

Yet, even with these strong federal laws mandating patient access to their health information, it is still a struggle for patients to get the records they need to involve caregivers in their care, seek second opinions, find the best possible treatments, and gain a greater understanding of their medical conditions. 

Ciitizen is collaborating with OpenNotes to develop an online resource – WhereIsMyMedicalRecord.org – to educate and help patients better understand:

  • What their rights are for accessing their medical records; 
  • How to find their medical records online;
  • Why patients should review their medical records; and
  • How to file a complaint with the federal government if they think they are being “blocked” from accessing their electronic health information.

OpenNotes is a not-for-profit organization that studies and teaches about the impacts on patients and the clinician-patient relationship when clinical notes are shared openly with patients (i.e., “open notes.”). They are a steadfast advocate for prompt access by patients to progress notes and are a trusted resource for clinicians seeking to understand the value of opening progress notes to access by patients. With this new online resource, patients are able to fully understand what, where, and how to navigate these new information blocking regulations. 


Ciitizen is proud to work with OpenNotes to develop WhereIsMyMedicalRecord.org as a resource for patients and further both our commitments to ensuring patients can seamlessly get their complete medical records.

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