Individual Access Rights

In a recent New York Times op-ed piece entitled “How a Bad Law and a Big Mistake Drove My Mentally Ill Son Away,” the father of a young man involuntarily hospitalized under Florida’s Baker Act decries “privacy laws” for limiting his access to information about his son’s whereabouts and care.   If this account is accurate, it highlights the widespread confusion that surrounds  health care providers’ communication with family members.

The article’s author, Norman Ornstein, describes a disturbing incident in which his son Matthew’s landlord reported that Matthew’s behavior was putting himself in danger.  Based on the landlord’s report, which Ornstein later describes as a pretext for removing Matthew from the property, Ornstein and his wife agreed to authorize a 72-hour involuntary commitment under the Florida statute.  They later learned that Matthew had been seized by police and taken to the county mental health facility, where he was held for three days and released.  He reported:

But the staff members wouldn’t let us in. In fact, they said privacy rules meant that they could not even confirm that he was there. … The Baker Act allows 72 hours of involuntary observation to see whether someone is in fact an imminent danger to himself or others. Matthew was not, and after three awful days, he was put in a taxi and sent home. We were not informed when he was released.

Matthew had begun to struggle with mental illness at age 24, but his age at the time is not specified.  Since he was no longer a minor, his parents would not be “personal representatives” with access to all his health information absent a guardianship appointment, power of attorney, or similar process recognized under applicable law.  However, the facility would have been permitted to confirm his admission and general condition under the HIPAA “directory exception,” which states:

(a) Standard: Use and disclosure for facility directories

(1) Permitted uses and disclosure. Except when an objection is expressed in accordance with paragraphs (a)(2) or (3) of this section, a covered health care provider may:

(i) Use the following protected health information to maintain a directory of individuals in its facility:

(A) The individual’s name;

(B) The individual’s location in the covered health care provider’s facility;

(C) The individual’s condition described in general terms that does not communicate specific medical information about the individual; and

(D) The individual’s religious affiliation; and

(ii) Use or disclose for directory purposes such information:

(A) To members of the clergy; or

(B) Except for religious affiliation, to other persons who ask for the individual by name.

HIPAA also allows family members to be given information in order to locate an individual, and allows the sharing of protected health information directly relevant to the family members’ involvement with the individual’s health care or payment for such care.

(b) Standard: Uses and disclosures for involvement in the individual’s care and notification purposes

(1) Permitted uses and disclosures.

(i) A covered entity may, in accordance with paragraphs (b)(2), (b)(3), or (b)(5) of this section, disclose to a family member, other relative, or a close personal friend of the individual, or any other person identified by the individual, the protected health information directly relevant to such person’s involvement with the individual’s health care or payment related to the individual’s health care.

(ii) A covered entity may use or disclose protected health information to notify, or assist in the notification of (including identifying or locating), a family member, a personal representative of the individual, or another person responsible for the care of the individual of the individual’s location, general condition, or death.

Finally, the facility could have simply asked Matthew if he agreed to allow the facility to notify his parents that he was being treated there. The Times account does not indicate whether the facility attempted to seek his consent, and it is possible that he was asked and refused.

The Office of Civil Rights (OCR) of the Department of Health and Human Services has addressed these concerns in a bulletin entitled HIPAA Helps Caregiving Connections –  HIPAA helps family and friends stay connected with loved ones who have a substance use disorder, including opioid abuse, or a mental or behavioral health condition:

If a family member, friend, or person you are caring for, has a mental health condition, substance use disorder (including opioid abuse), or other health problem, it can be difficult to stay connected if their condition worsens and they enter a health care facility for observation or treatment. HIPAA helps by allowing the health and mental health providers who treat your loved one to make decisions about communicating with his or her family and friends based on their professional judgment about what is best for the patient.

For Notification Purposes: HIPAA helps you stay connected with your loved one by permitting health professionals to contact you with information related to your family member, friend, or the person you are caring for, that is necessary and relevant to your involvement with the patient’s health care or payment for care. For example, if your loved one becomes disoriented, delirious, or unaware of their surroundings, due, for example, to opioid abuse or a mental health crisis, and arrives at a hospital emergency room for treatment, the doctors, nurses, and social workers may notify you of the patient’s location  and general condition. First, the staff will determine whether the patient agrees to share this information with you or if you are the patient’s personal representative.

If the patient is not able to make decisions (for example, due to being unconscious, sedated, severely intoxicated, or disoriented), then the doctors, nurses, and social workers may contact you without the patient’s permission when they determine that doing so is in the patient’s best interests.

To Help the Patient: HIPAA helps you to assist your loved one by permitting doctors, nurses, and social workers to share protected health information that is related to the care and assistance you are providing to your loved one. For example, if your adult son has been prescribed medication to treat anxiety, and you are helping him by providing supervision or housing, the discharge nurse may inform you what medication he will be taking, if he doesn’t object to sharing this information with you–as well as the side effects to watch for, or symptoms that indicate the medication isn’t working or isn’t being taken properly. If your son is unable to make health decisions independently, the nurse may decide to share this information with you if the nurse determines, using professional judgment, that it is in your son’s best interests.

See also Elizabeth Litten’s post following the Florida nightclub shootings in 2016:  Reflections on HIPAA Protections and Permissions in the Wake of the Orlando Tragedy

Some facilities tend to err on the side of caution when they are uncertain whether they are permitted to release information.  In addition, to the extent a state law affords greater privacy protections than those afforded under HIPAA, the state law protections will control.  However, erring on the side of caution when no HIPAA restriction applies and no other law affords greater privacy protections may actually exacerbate problems for the individual, particularly in the context of mental health.



In our most recent post, the Top 5 Common HIPAA Mistakes to Avoid in 2018, we noted that the U.S. Department of Health and Human Services, Office for Civil Rights (OCR) has recently published guidance on disclosing protected health information (PHI) related to overdose victims. OCR published this and other guidance within the last two months in response to the Opioid Crisis gripping the nation and confusion regarding when and to whom PHI of patient’s suffering from addiction or mental illness may be disclosed.

Pills and capsules on white backgroundTo make the guidance easily accessible to patients and health care professionals, OCR published two webpages, one dedicated to patients and their family members and the other dedicated to professionals.

  • Patients and their family members can find easy-to-read commentary addressing the disclosure of PHI in situations of overdose, incapacity or other mental health issues here.
  • Physicians and other health care professionals can find similar fact sheets tailored to their roles as covered entities here.
  • OCR also recently issued a two-page document summarizing its guidance on when health care professionals may disclose PHI related to opioid abuse and incapacity [accessible here].

The main points from this guidance include:

  1. If a patient has the capacity to make decisions regarding his or her health care, a health care professional may not generally share any PHI with family, friends or others involved in the patient’s care (or payment for care), unless the patient consents to such disclosure.  However, a health care professional may disclose PHI if there is a serious and imminent threat of harm to the patient’s health and the provider in good faith believes that the individual to whom the information is disclosed would be reasonably able (or in a position) to prevent or lessen such threat. According to OCR, in the context of opioid abuse, this rule allows a physician to disclose information about the patient’s opioid abuse to any individual to whom the physician in good faith believes could reasonably prevent or lessen the harm that could be caused by the patient’s continued opioid abuse following discharge.
  2. If the patient is incapacitated or unconscious, HIPAA allows health care professionals to disclose certain PHI to family and close friends without a patient’s permission where (i) the individuals are involved in the care of the patient, (ii) the health care professional determines that disclosing the information is in the best interests of the patient, and (iii) the PHI shared is directly related to the family or friend’s involvement in the patient’s health care (or payment for such health care). As an example, OCR clarified that a physician may, in his or her professional judgment, share PHI regarding an opioid overdose and related medical information with the parents of someone who is incapacitated due to an overdose.
  3. OCR also addressed the difficult situation where a patient is severely intoxicated or unconscious, but may regain sufficient capacity to make health care decisions several hours after arriving in the emergency room.   In such situations, HIPAA would allow a physician or nurse to share PHI related to the patient’s overdose and medical condition with the patient’s family or close personal friends while the patient is incapacitated, so long as the nurse or doctor believes that it is in the patient’s best interest to do so and the information shared with the family member or friend is related to the individual’s involvement in the patient’s health care.

OCR published similar guidance, available at the above websites, regarding the disclosure of PHI related to the mental health of a patient.  Included in that guidance is clarification that HIPAA does not prohibit treating physicians from sharing PHI of a patient with a mental illness or substance use disorder for treatment purposes, except in the case of psychotherapy notes.

However, it is important to understand that OCR’s guidance on these issues does not supersede state laws or other federal laws or rules of medical ethics that would apply to disclosure of a patient’s PHI, including the federal confidentiality regulations [located at 42 CFR Part 2] pertaining to patient records maintained in connection with certain federally-assisted substance use disorder treatment programs.  The “Part 2” regulations (as well as state patient confidentiality laws that are more restrictive than HIPAA) could prohibit some or all of the disclosures which OCR has now clarified are permitted under HIPAA.

If you have a question regarding how this new guidance may affect your practice, please contact a knowledgeable attorney.

Heading into its 22nd year, HIPAA continues to be misunderstood and misapplied by many, including health care industry professionals who strive for (or at least claim the mantle of) HIPAA compliance. Here is my “top 5” list of the most frequent, and most frustrating, HIPAA misperceptions seen during 2017:

  1. “If I’m using or disclosing protected health information (PHI) for health care operations purposes, I don’t need a Business Associate Agreement.”

Yes, HIPAA allows PHI to be used or disclosed for treatment, payment and health care operations purposes, but the term “health care operations” is defined to include specific activities of the covered entity performing them. In addition, the general provision permitting use or disclosure for health care operations purposes (45 C.F.R. 164.506(c)) allows such use or disclosure for the covered entity’s “own” health care operations. So if the covered entity (or business associate) is looking to a third party to perform these activities (and the activities involve the use or disclosure of PHI), a Business Associate Agreement is needed.

  1. “I don’t need to worry about HIPAA if I’m only disclosing a patient’s/member’s telephone number, since that’s not PHI.”

If the data disclosed was ever PHI, it’s still PHI (unless it has been de-identified in accordance with 45 C.F.R. 164.514). For example, if data is received by a health care provider and relates to the provision of care to patient (e.g., as a phone number listed on a patient intake form), it’s PHI – even though, as a stand-alone data element, it doesn’t appear to have anything to do with the patient’s health. Unless the patient has signed a HIPAA authorization allowing the disclosure of the phone number to a third party vendor, the vendor receiving the phone number from the provider to perform patient outreach on behalf of the provider is a Business Associate.

  1. “When a doctor leaves a practice, she can take her patients’ medical records with her.”

This is not automatic, particularly if the practice is the covered entity responsible for maintaining the records and the patient has not expressly allowed the disclosure of his or her records to the departing doctor. In most cases, the practice entity transmits health information in electronic form in connection with a HIPAA transaction and acts as the covered entity health care provider responsible for HIPAA compliance. The patient can access his or her records and direct that they be sent to the departing physician (see guidance issued by the U.S. Department of Health and Human Services (HHS) on individual’s access rights), and if the patient shows up in the departing doctor’s new office, the practice can share the patient’s PHI under the “treatment” exception. If the practice wants the departing doctor to maintain the records of patients she treated while part of the practice, it can enter a records custodian agreement and Business Associate Agreement with the departing doctor.

  1. “I can disclose PHI under the “sales exception” to anyone involved in due diligence related to the sale of my health care practice/facility without getting a Business Associate Agreement.”

HIPAA prohibits the sale of PHI, but excluded from this prohibition is “the sale, transfer, merger, or consolidation of all or part of the covered entity and for related due diligence” as described in the definition of health care operations. The definition of health care operations, in turn, includes the “sale, transfer, merger, or consolidation of all or part of the covered entity with another covered entity, or an entity that following such activity will become a covered entity and due diligence related to such activity.”  This “sales exception” is a bit vague and the cross-referencing of other regulations adds to the confusion, but the fact that disclosing PHI in connection with due diligence related to a possible sale of a covered entity is not prohibited as a “sale” does not mean it’s permitted without regard to other HIPAA requirements and protections. Attorneys, consultants, banks, brokers and even potential buyers should consider whether they are acting as business associates, and careful buyers and sellers may want to require Business Associate Agreements with those accessing PHI.

  1. “If I’m treating an overdose victim [or other unconscious or incapacitated person], I can’t share his/her PHI with family members or caregivers.”

The HHS Office for Civil Rights recently published guidance to clarify that HIPAA does not prohibit health care professionals from sharing information with family members and others in crisis situations, such as those involving overdose victims. I blogged on a related topic, involving the nightclub shooting tragedy in Orlando, Florida, back in 2016. The bottom line is that HIPAA allows the disclosure of PHI in two circumstances that are often forgotten: (1) where the patient is unconscious or incapacitated and the provider believes sharing information with family and close friends involved in the patient’s care is in the best interests of the patient; and (2) where the provider believes that sharing information will prevent or lessen a serious and imminent threat to the patient’s health or safety.  More stringent laws may apply, such as those governing substance use disorder treatment records created or maintained by certain federally-assisted substance use disorder treatment providers or state laws, but HIPAA permits providers to exercise discretion in crisis situations.

We blogged on this back in early May, but compliance with individuals’ rights to access their PHI under HIPAA is even more critical now that OCR has announced that its current HIPAA audits will focus on an audited Covered Entity’s documentation and process related to these access rights.

In an email sent to listserv participants on July 12, 2016 from OCR-SECURITY-LIST@LIST.NIH.GOV, the U.S. Department of Health and Human Services (HHS) included the following list of areas of focus for the desk audits:

Requirements Selected for Desk Audit Review
Privacy Rule
Notice of Privacy Practices & Content Requirements  [§164.520(a)(1) & (b)(1)]
Provision of Notice – Electronic Notice   [§164.520(c)(3)]
Right to Access  [§164.524(a)(1), (b)(1), (b)(2), (c)(2), (c)(3), (c)(4), (d)(1), (d)(3)]
Breach Notification Rule
Timeliness of Notification  [§164.404(b)]
Content of Notification  [§164.404(c)(1)]
Security Rule
Security Management Process —  Risk Analysis  [§164.308(a)(1)(ii)(A)]
Security Management Process — Risk Management  [§164.308(a)(1)(ii)(B)]

As discussed in our prior post, HHS issued guidance regarding individuals’ rights to access PHI earlier this year. Here is a link to this PHI access guidance:  Individuals’ Right under HIPAA to Access their Health Information |

The HHS access guidance stresses that Covered Entities should provide individuals with “easy access” to their PHI and cannot impose “unreasonable measures” on the individuals with respect to this right to access. The HHS access guidance provides important information regarding the different rules that apply when an individual provides a signed authorization for release of their PHI versus when an individual is really making a request for access to his or her PHI.

If an individual is asking for the PHI to be provided to him or her, this is really a request for access even if the individual is providing a signed authorization for release of the PHI.

If the individual is asking the PHI to be directed to a third party, this can be either a situation when a signed authorization is needed or can be an access request, depending on who is really originating the request (the individual or the third party). A Covered Entity cannot require an individual to provide a signed authorization to make an access request.  A Covered Entity can require that the access request be in writing and can require use of a form as long as it does not impose undue burden on the individual’s right to access.

The HHS access guidance also indicates that if an individual requests that his or her PHI be provided by email, the Covered Entity is required to do so and further, if the individual requests in writing that the PHI be provided by unsecure, unencrypted email, the Covered Entity is required to do so after notifying the individual in writing of the risks of this method of transmission. (This notice can be included on the access request form.)

As a result of the HHS access guidance, a Covered Entity may need to review and amend its HIPAA Privacy Policies and Procedures governing individual rights with respect to access to PHI, the form it uses for individual access requests, and its employee training protocols to be sure employees aren’t requiring a patient  (or member, in the case of a health plan Covered Entity) to sign an authorization form when the patient is requesting access to PHI.

My heart goes out to any family member trying desperately to get news about a loved one in the hours and days following an individual or widespread tragedy, irrespective of whether it was triggered by an act of nature, an act of terrorism, or any other violent, unanticipated, life-taking event. My mind, though, struggles with the idea that HIPAA could actually exacerbate and prolong a family member’s agony.

HIPAA is, generally speaking, intended to protect our privacy when it comes to health status, treatment, or payment and to facilitate appropriate access to our health information. But, as is typical with federal laws intersecting areas historically governed by State law, HIPAA defers to State law in some key respects.  For example, if a HIPAA provision is contrary to a similar provision of State law, it preempts State law unless the State law relates to the privacy of individually identifiable health information and is “more stringent” than the comparable HIPAA provision.  HIPAA also references “applicable law” in describing who can get information as a personal representative of an individual or act on behalf of a deceased individual.

So what does this mean in the context of family members seeking information about loved ones following the devastating Orlando, Florida night club shooting or following some other violent tragedy?

If a victim is hospitalized and a friend or family member is trying to get information about the victim, HIPAA permits the hospital to share information under the following circumstances:

*          A hospital may use protected health information (PHI) to notify or assist in the notification of a family member, personal representative or other person responsible for the patient’s care of the patient’s location, general condition or death

*          A hospital can use a facility directory to inform visitors and callers of a patient’s location and general condition

*          A hospital can release information as to the victim of a crime in response to law enforcement’s request for such information under certain circumstances, and law enforcement can notify the families

*          If the patient is competent, the patient can tell the hospital that it may release all information to their family and friends

*          If the patient is not competent to authorize release of information, a “personal representative” (a person authorized under State law to act on behalf of the patient to make health care decisions) can have all information necessary to make decisions.  That person can also authorize release of information to others

Sadly, the agony of loved ones seeking information about a patient may be prolonged if they are not viewed as family members or if State law does not recognize the loved one as a “personal representative”.  Sure, the federal Department of Health and Human Services (HHS) could amend the HIPAA regulations to deem certain individuals (for example, same-sex partners who are not legally married) to be personal representatives for purposes of access to PHI.  [Note: HHS treats legally married same-sex spouses as “family members” under HIPAA — see special topic publication available here.]

However, if the State law does not recognize these certain individuals as personal representatives, perhaps because the State law is “more stringent than” HIPAA in affording the patient greater privacy, HHS might also have to amend its HIPAA preemption regulations.

Hospitals and other health care professionals are constantly called upon to exercise discretion in dealing with requests for PHI from family members and loved ones of patients while complying with HIPAA.   HIPAA regulations may need to be modified or perhaps could be “waived” (as described yesterday’s Washington Post article) in some cases, but only when doing so furthers the fundamental HIPAA goals of privacy protection and facilitation of appropriate access.

Because of the enormity of the Orlando tragedy, some State legislatures may be expected to consider whether changes are necessary to promote information sharing in exigent circumstances while preserving the State’s interest in affording patients greater privacy protection than that afforded by HIPAA.

Daily struggles to protect personal data from hacking, phishing, theft and loss make it easy to forget that HIPAA is not just about privacy and security.  It also requires covered entities (CEs) to make an individual’s protected health information (PHI) accessible to the individual in all but a few, very limited circumstances.  Recent guidance published by the Department of Health and Human Services (HHS Guidance) emphasizes the need for covered entities to be able to respond to an individual who says “I want my PHI” in a way that complies with HIPAA and state law access requirements, even when these requirements seem confusing and contradictory.

HIPAA authorizations are, perhaps, one of the most commonly misunderstood and misused forms. The HHS Guidance helpfully reminds CEs that authorizations are not needed for a CE to share PHI for treatment, payment and health care operations, and, of course, a CE can share PHI with a business associate under a HIPAA-compliant business associate agreement.  But when an individual requests PHI, whether directly or through a third party, it’s critical that the CE understand whether it is an access request or a request for disclosure pursuant to a HIPAA-compliant authorization.

My law partner and fellow HIPAA enthusiast Beth Larkin comments on some of the difficulties a CE faces when responding to an individual’s access request, highlighting the need to distinguish between an access request and disclosure pursuant to an authorization:

The HHS guidance wants CEs to provide individuals “easy access” to their health information.  CEs still, however, have to deal with other HIPAA requirements, including verification of the identity of the requestor, securing the PHI from unauthorized access and determining breach if there is unauthorized access.  Also, it is not always clear whether a patient is exercising an access right or requesting PHI pursuant to an authorization.  The patient may not know the difference and just indicates he or she wants copies of records and may present either an access request or an authorization form.

The HHS Guidance explains that while a CE can require an individual to submit a written access request, it can’t do so in a manner that creates a barrier or would delay the individual’s access:

For example, a doctor may not require an individual: …  [t]o use a web portal for requesting access, as not all individuals will have ready access to the portal …

If a CE uses a written form for individuals to request access to records (and ensures the form is readily accessible in multiple ways), the CE should give individuals as much information as possible about each form.

For example, as illustrated in the chart included in the HHS Guidance, a HIPAA authorization permits, but does not require, a CE to disclose the PHI.  An access request requires the disclosure (and requires the CE to act on the request within 30 days).  In addition, HHS explains that fees charged by the CE are limited when the individual requests access, and not when PHI is requested pursuant to an authorization (though certain charges might be prohibited under HIPAA regulations proscribing the receipt of remuneration for the disclosure of PHI). Finally, HHS notes that PHI sent pursuant to an authorization must be sent securely, while an individual can request that PHI sent pursuant an access request can be sent through an unsecure medium (though the risks of such a choice should be communicated to the individual if feasible).  If the CE makes all of this information clear and encourages the individual to ask questions as to which form should be used, it seems reasonable for a CE to then be able to rely on the individual’s choice of form.

When a third party requests an individual’s PHI, though, it can be especially difficult for a CE to figure out whether an authorization form has been sent when an access request would have been appropriate. Here, HHS suggests the CE reach out to the individual:

Where it is unclear to a covered entity, based on the form of request sent by a third party, whether the request is an access request initiated by the individual or merely a HIPAA authorization by the individual to disclose PHI to a third party, the entity may clarify with the individual whether the request was a direction from the individual or a request from the third party.

In short, if a HIPAA authorization is really an individual’s misguided attempt to say “I want my PHI!”, the CE will need to make sure it follows the individual access right requirements in responding.