patient access to notes

Open Notes and Patient Right of Access

A patient’s right of access to their own health information starts with discussions with their doctor. HIPAA extends their right of access to their own medical records. New rules from the 21st Century Cures Act effective this year also support patient access to their records, including clinical notes. Gone are the days of keeping patients in the dark.

Patient – doctor discussions can be technical. Do patients always understand everything they hear? Will they remember? On one side is the doctor or other health care provider, with years of education, experience and technical training and on the other side, a patient who (most likely) hasn’t studied anatomy or medicine.

Quality health care requires that patients are educated, informed and have access to their own medical records. Knowledgeable patients who understand their condition do better than those who don’t. They can take an active role in their own care, follow prescriptions more easily and identify errors and inaccuracies in their records.

The HIPAA Right of Access requirement pre-dates the recent Interoperability and Information Blocking Rule in the 21st Century Cures Act. Understanding both is essential for staying up to date with best patient care practices and maintaining a strong compliance program.

HIPAA Requires Access to Broad Array of Information

In 2021 the patient Right of Access requirement remains a top enforcement priority of the Office for Civil Rights (OCR) which enforces HIPAA.

The HIPAA Privacy Rule gives individuals the right to obtain the medical and health information (protected health information or PHI) about them in one or more “designated record sets” maintained by or for the individuals’ health care providers and health plans (HIPAA covered entities). Designated record sets include medical records, billing records, payment and claims records, health plan enrollment records, case management records, as well as other records used, in whole or in part, by or for a covered entity to make decisions about individuals.

These may include insurance information, clinical laboratory test reports, X-rays, wellness and disease management program information, and notes (such as clinical case notes or “SOAP” notes (a method of making notes in a patient’s chart).

Exceptions to the HIPAA Right of Access include:

  1. psychotherapy notes that a mental health professional maintains separately from the individual’s medical record and that document or analyze the contents of an individual, group or family counseling session.
  2. information compiled in reasonable anticipation of, or for use in, a legal proceeding (but the individual retains the right to access the underlying PHI from the designated record set(s) about the individual used to generate the litigation information).

The 21st Century Cures Act Mandates Open Notes 

Newer national health policy underscores and amplifies longstanding HIPAA requirements for transparency in medical records. The 21st Century Cures Act (signed into law in December, 2016) is a broad health policy law which promotes and funds research into preventing and curing serious illnesses; accelerates drug and medical device development; attempts to address the opioid abuse crisis; and tries to improve mental health service delivery.

The piece related to patient access to medical records is contained in provisions that push for greater interoperability, adoption of electronic health records (EHRs) and support for human services programs. Final rules published in April 2021 clarify the open notes requirements.

The U.S. Department of Health and Human Services (HHS) now nationally mandates that patients be granted access to all of the information in their medical records, electronically and without charge or delay, and through patient portals or, to the extent possible, through third-party smartphone applications (apps).

On April 5, 2021, the Interoperability, Information Blocking, and ONC Health IT Certification Program (the Information Blocking Rule) specifies that eight types of clinical notes are among electronic information that must not be blocked and must be made available free of charge to patients. To meet the interests of some patients, the rules allow specified exceptions.

The Open Notes Initiative

Sharing clinical notes is not a new concept. The “Open Notes” initiative has been around since the 1970’s but received a boost in 2010 when three health care providers launched a study to evaluate the effects of sharing clinical notes with patients. The study involved 105 primary care doctors inviting 20,000 of their patients to read their clinical notes via secure online patient portals. The study then evaluated the effects of the note sharing. It was overwhelmingly positive for both doctors and patients. A research paper was published in the Annals of Internal Medicine, and according to Wikipedia:

The paper showed that doctors reported little change in workload and clinician fears were unfounded. Patients overwhelmingly approved of note sharing as a practice; few were worried or confused by their notes. Instead, patients reported that reading notes helped them feel more in control of their health and health care.

Fast forward to today, and according to the federal Information Blocking Rule, there are eight types of clinical notes that must be shared:

  1. Consultation notes
  2. Discharge summary notes
  3. History and physical
  4. Imaging narratives
  5. Laboratory report narratives
  6. Pathology report narratives
  7. Procedure notes
  8. Progress notes

The American Medical Association is on board, and provides a toolkit to help clinicians manage the new requirements, with education and resources adaptable to all kinds of organizations in healthcare.

Behavioral Health and Open Notes

As noted above, HIPAA does not require that patients be provided access to psychotherapy notes that are maintained separately from the patient’s designated record set. However, a growing number of mental health professionals see value in sharing clinical notes. There is sensitive guidance about this topic on the Open Notes website.

Stay Current with HIPAA and Help Patients Achieve Better Outcomes

Longstanding HIPAA Right of Access requirements dovetail with newer mandates about sharing clinical notes with patients. If you need help understanding HIPAA, contact The HIPAA E-Tool®.  We can also guide you to resources to learn more about the new Interoperability and Information Blocking Rules related to Open Notes. They go hand in hand and will help both your compliance program and patient relations.

The HIPAA E-Tool® makes compliance fast and easy. Get your free HIPAA Quick Start Kit, complete with a webcam privacy guard, HIPAA Hot Zone labels and a HIPAA checklist delivered directly to your office.

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Maggie Hales

Maggie Hales is a lawyer focusing on health information privacy and security. As CEO of ET&C Group LLC she advises health care providers and business associates in 36 states, Canada, Egypt, India and the EU, using The HIPAA E-Tool® to deliver up to date policies, forms and training on everything related to HIPAA compliance.

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