Q. I regularly accompany my wife, Liz, to her neurology and primary care appointments for her dementia care. Doctors, nurses, and medical assistants often rush in and out, rarely spending time or making eye contact with us. Instead, they stare at their computer screens, even before they sit down. What could be so interesting on those screens? Is there any way to find out what is written in the notes about my wife’s condition that these health care professionals can see but aren’t sharing with us? When she was of sound mind, my wife and I both signed forms that medical information could be shared with one another. How come they still don’t share everything? Thanks for your help!
A. For the past decade, most U.S. health systems have encouraged patients and, with patient permission, their family caregivers, to use online portals (such as MyChart for INOVA patients) to access a patient’s problem list, medication list, appointment schedule, and lab results. This has been helpful for keeping family caregivers more informed about the details of treatment plans. But what’s written in the chart notes has rarely been available online.
New Federal Rule Mandates Sharing of Chart Notes
On April 5, 2021, federal rules have mandated sharing clinical notes, as part of the bipartisan 21st Century Cures Act, specifying that eight types of clinical notes are among electronic information that must be made available free of charge to patients and caregivers, while still abiding by Health Insurance Portability and Accountability Act (HIPAA) rules that govern sharing other medical information. Under this new rule, clinical notes must be shared by health systems by April 5, 2021, and shared with a patient’s third-party application (“app”) that may be downloaded to a smartphone or other device by the end of 2022.
Research suggests that shared visit notes have increased the quality and safety of health care in health systems around the world wherever they are used. They also create the possibility of greater partnership among doctors, caregivers, and patients working from the same set of information.
Who Is Allowed to See a Patient’s Medical Information?
Doctors and other health care professionals can share medical information with family caregivers or others directly involved with a patient’s care, if the patient is awake, has a reasonable understanding of the situation, and has the opportunity to say no. HIPAA law requires health care providers abide by a patient’s written wishes and use professional judgment to decide what should be shared.
If the patient is not present (such as receiving surgery), unconscious, delirious, or has dementia (which of course impairs the person’s ability to understand and make decisions), again, health care providers are required by HIPAA to abide by the patient’s wishes, as noted in his or her advanced medical directive, to determine which family caregivers should be told what information and involved in which decisions. In incapacity planning, a HIPAA Waiver allows you to get the same medical information the patient would get – complete access to the patient’s medical records and any information from the doctors, the hospital, or the nursing home that you need about the patient’s health or health care.
Doctors can share medical information with nurses, therapists, and other health care professionals on the patient’s medical team. This is important for good care and is not affected by HIPAA. The patient’s information may also be shared with health insurance, managed long-term care plans (MLTCs), and state and federal agencies. This is required for payment and care coordination.
Types of Information that Must Be Shared
The eight types of clinical notes that must be shared as part of the new rule are outlined in the United States Core Data for Interoperability (USCDI):
- consultation notes;
- discharge summary notes;
- history & physical;
- imaging narratives;
- laboratory report narratives;
- pathology report narratives;
- procedure notes;
- progress notes.
Clinical notes to which the rules do not apply include:
- Mental health notes, including psychotherapy notes that are separated from the rest of the individual’s medical record and are recorded by a mental health professional documenting or analyzing the contents of conversation during a private counseling session or a group, joint, or family counseling session
- Criminal/civil proceeding notes: Information compiled in reasonable anticipation of, or use in a civil, criminal, or administrative action or proceeding.
Exceptions to the Rules
There are complex situations in which information can be blocked. These can include:
- Privacy considerations: The medical professional can refuse to fulfill a request to access, exchange, or use electronic health information in order to protect an individual’s privacy, provided certain conditions are met.
- Security Exceptions: The medical professional can interfere with the access, exchange, or use of electronic health information to protect the security of the information, provided certain conditions are met.
How Can Caregivers Best Use This New Transparency to Help Their Loved Ones? Here Are Some Ideas:
Now that more medical information is being shared with caregivers, this new level of transparency can be used in several ways:
- Gaining greater insight into the doctor’s thinking allows caregivers to become more involved in medical decision-making, especially when their loved ones have cognitive deficits. It will also compel families who are more aware of the status quo to plan ahead for long-term care and other important matters for their loved ones.
- Make a plan for more discussion: If caregivers opt to read medical notes and clinical impressions, then they should also have the means for follow-up discussion with the professionals to ask for clarification or further explanation. Caregivers should ask specifically about their preferred means for having a more extensive conversation with the provider about what’s been written to clear up any misunderstandings.
- Have slower, more meaningful dialogue with doctors: The shared visit notes can become a forum for a slower, less constrained dialogue in which caregivers respond to what doctors have written by adding their own notes with their own observations, questions, and clarifications. The physicians can respond back in writing or address remaining concerns in person at the beginning of the next medical appointment.
So, based on your question, you should now be able to read the shared visit notes and clinical impressions from your wife’s neurologist and primary care provider. After reviewing the notes, you could add information to include with the doctors’ notes or even offer a compliment or two on their good care. It might give you some solace that you are helping your wife, in partnership with her doctors, as fully as you can.
What if a Medical Professional Doesn’t Want to Comply? — You Can Report Information Blocking
People who are 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.
You can submit an information blocking report by visiting the HealthIT.gov Help Center and clicking the link to “Click here to raise a request without an account.”
Planning for Incapacity/Having a HIPAA Waiver on File
To ensure your wishes are met and that you have a HIPAA waiver on file that gives access to medical information to someone you trust, it is important to start your planning now.
If you have not done Incapacity Planning, Estate Planning, or Long-Term Care Planning, or if you have a loved one who is nearing the need for long-term care or already receiving long-term care, please contact us for an initial consultation:
Fairfax Estate Planning and Incapacity Planning: 703-691-1888
Fredericksburg Estate Planning and Incapacity Planning: 540-479-1435
Rockville Estate Planning and Incapacity Planning: 301-519-8041
DC Estate Planning and Incapacity Planning: 202-587-2797
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About Evan H Farr, CELA, CAP
