Big News about Records Access Rights for SSD Claimants and Patients Generally
New and big for patients generally (and therefore Social Security Disability claimants): The 21st Century Cures Act requires that eight types of clinical notes are among electronic information that must not be blocked (see 45 CFR 171.103 regarding the elements of information blocking) and must be made available free of charge to patients.
The federal rules concerning implementation of this law kicked in 4/5/2021, after originally being slated for 11/2/2020. https://www.healthit.gov/curesrule/resources/information-blocking-faqs
Why is this important? The portal access my clients have had was only as useful as their most useful and diligent medical provider, vis-a-vis sharing to portal. In my experience, while patient portals have been great to confirm that there was actually a medical appointment that the patient attended, (and sometimes test results, but sometimes not), often that was about it. The portal access was woefully sparse of any information of substance. As a Social Security Disability attorney, I always had to order the full set of official records for the time period in question, regardless of patient portal access, because the patient’s accessible information did absolutely nothing to tell him details of his medical condition. There was no meat to speak of.
Moreover, because many medical providers (or their 3rd party information release contractor/vendors) sought to charge hefty fees for patients to obtain their records, providing the substance for free on the portal may not have been on the top of the to-do list. This patient cost had proven to be extremely preventive of many claimants being able to successfully pursue their own social securitiy insurance benefits once they became disabled, because they could not access the evidence that would otherwise be their foundation of proof. The very information about themselves that the patients needed access to was never available to him via portal, nor for free:
What were the current complaints of the patient on that day?
Were there any comorbidities?
Did he appear ‘well-nourished’ at the visit or was he looking fatigued or unwell?
How was his presentation/demeanor?
Why was he there?
What were his symptoms?
What did the physical exam entail and reveal?
What was he diagnosed with, ongoing or new?
Did the doctor review his recent MRI results and share to patient?
What was the doctor’s take on that diagnostic?
What was the medical provider’s plan to address the medical condition being treated?
What options did the doctor discuss with the patient and what did the patient agree to or have concerns with?
What were the current medications he was on and were they working as hoped for? Any side effects?
What was the prognosis?
Under these newer rules, going forward, patients and claimants, and their hired or pro-bono help (that would be us SSD lawyers and representatives, among others), should find portal records to be far more substantial and useful for a variety of critical needs, not the least of which is supporting their Social Security Disability claims.
The types of clinical notes that must now be shared (short of very limited exceptions) include:
Consultation, progress and procedural notes
Discharge summary notes
Medical and other relevant history notes
Physical exam notes
imaging narratives
laboratory and pathology report narratives
What it doesn’t do: Remaining on the negative side, from the perspective of a SSD practitioner: As always, and continuing to hamper the lives of mental health patients, clinical notes to which the rules for access continue to not apply, without regard to safety or need:
Psychotherapy notes (about excluding psychotherapy notes, see https://www.law.cornell.edu/cfr/text/45/164.524) that are separated from the rest of the individual’s medical record and are recorded by mental health professional documenting the contents of conversation during a private or group/family counseling. This is true regardless of the fact that the patient has officially requested that these records be released to his choice, including his advocate or lawyer to help him provide legal proofs for insurance claims, disability claims, employment, etc. (definition of psychotherapy notes: https://www.law.cornell.edu/cfr/text/45/164.501)
Note: The law does NOT prevent a caring mental health professional from generally releasing this information (psychotherapy notes) as per the patient/client’s request and HIPAA compliant release (assuming it is not unsafe to do so) – it only gives him the legal right to refuse to lift that finger.
Additional Note: This law does NOT allow the mental health professional to refuse the rest of the record set, but only those psychotherapy notes described above. The MH professional must release medication prescription and monitoring, counseling session start and stop times, the modalities and frequencies of treatment furnished, results of clinical tests, and any summary of the following items: diagnosis, functional status, the treatment plan, symptoms, prognosis, and progress to date.
While the federal law, then, does not create or protect a patient’s right to his session psychotherapy notes, some state laws, being more protective or establishing of the patient’s rights than the federal law, do require that they be released. https://www.verywellmind.com/requesting-therapy-notes-425199
Enforcement: Those unable to access their personal health information for clinic visit dates on or after April 5, 2021, and who are not being provided with this information “without delay” from their clinicians or health systems, are able to submit a report of “information blocking” through the U.S. Department Health & Human Services website and HealthIT.gov Help Center.