OCR Proposes Change in Disclosure of Deceased Patient Records

A small provision in the recently released draft modifications to the HIPAA privacy rule could have a big impact for families and caregivers seeking the health records of deceased patients.

Section 164.510(b) of the proposed regulation would allow covered entities to disclose protected health information to family members and others who were involved in an individual’s care or payment for care, regardless of whether the patient (or the state) has named them a personal representative.

Obtaining the records of decedents has been a frustration for many people, and managing the interplay of federal and state law has been a challenge for many HIM departments. As Journal writer Chris Dimick described in a story last year, HIPAA states that people have the same privacy rights in death as they do in life, but it also requires that covered entities must release medical records to those people either appointed by the patient or who are deemed a personal representative by state law. 

Complications occur when a patient dies without having named a personal representative. In those instances, HIPAA defers to state law to determine access rights.

The Office for Civil Rights, which authored the draft modifications, has been aware of the situation. It writes, “We have heard concerns that family members, relatives, and others, many of whom may have had access to the health information of the deceased individual prior to death, have had difficulty obtaining access to such information after the death of the individual, because many do not qualify as a “personal representative” under §164.502(g)(4) [of HIPAA].”

OCR is proposing to amend HIPAA to permit covered entities to disclose a decedent’s information to family members and others who were involved in the care or payment for care of the decedent prior to death, unless doing so is inconsistent with any prior expressed preference of the individual that is known to the covered entity.

Such disclosure would be permitted, but it would not be required. The modifications would not change the authority of a personal representative with regard to the decedent’s protected health information.

OCR requests comment on any unintended consequences that the new provision may cause. Comments are due by September 13, and instructions for commenting are found on page 40868 of the published rule.

In a related modification, OCR proposes that protected health information status be removed from the records of patients who have been deceased more than 50 years.

10 Comments

  1. For thirteen years, I have tried, with the collaboration of the next-of-kin to get access to a mental health record that is 134 years old. Scholars and several of the decedent’s relatives wrote in my support to no avail. Finally!! Please make the changes proposed for Section 164.502f, restricting protection to 50 years, effective immediately. The record will be crucial to a scholarly book I’ve written and am about to place with an academic publisher. I’ll wait for this record. I’m very grateful, beyond words.

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  2. The release of medical records of the deceased after 50 years is extremely important to historians, and I’m sure that, if more knew this was happening, you’d get a huge, supportive response. This has been extremely frustrating for years for well-known academics as well as for graduate students working on dissertations. Please make the records available as soon as possible. This will be helpful in my early 19th century research. I know graduate students who had to change topics or write inferior dissertations because of this.

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  3. It’s interesting to get researchers’ viewpoints. I just followed up this post with an article in the September print edition. I think some people will object to the proposal on the grounds that their private information should remain private, period. However, I wonder if others may simply object to the proposed time period–50 years seems short from the individual’s point of view. OCR writes that “there may be few remaining individuals concerned with the privacy of such information” after 50 years, but it’s easy to imagine children and grandchildren surviving the deceased for that period. I imagine OCR’s final rule will depend on the feedback it receives.

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  4. The proposed changes remedy a sigificant defect in current regulations. It makes no sense to stipulate that patients’ records remain private in perpetuity. To do so places insuperable barriers in the way of scholars seeking to understand the past. To make such records available after half a century following the patient’s death makes a great deal ofr sense and in no way impacts relatives who are alive seveeral generations later. I urge that the changes be adopted.

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  5. It does not seem sensible to extend privacy rights to people who have been dead for fifty years. This is a democracy in which transparency and the ability of historians to pursue the truth are greater priorities. Another reason for openness is that some illnesses are hereditary and the offspring should have the right to know what is in their genes. HIPAA and state laws promoting secrecy have created a tremendous problem for serious scholars. As it is now, scholars are completely shut out with no recourse. I urge you to adopt these changes.

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  6. A well-organized society is one in which we know the truth about ourselves collectively, not one in which we tell pleasant lies about ourselves. It’s very important to allow public access to archives generations later. The truth is that most states assume that medical records will be destroyed when they’re twenty or twenty-five years old, and in fact, there is nothing to stop the destruction of old records, even of national significance, before an historian can see them. Those of historic importance, by the way, are minuscule in number. Not many people would be affected by allowing scholarly access after the patient is long dead.

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  7. Because we were never able to obtain accurate information on the mental illness of my great-grandmother who died in a mental institution, her descendants have feared the unknown diagnosis and how it may have been inherited in some form by them. Please release it. The descendants, if anyone, have the right to know, and the need to know. I, too, am a graduate student of history and would welcome historians having access to this vital type of mental health information.

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  8. This is so important to my scholarly research that I’m writing again to let you know what can be at stake. In my case, I tried for years to get access to one mental health record, a medical log (as it was described to me) on a patient from about 1850 to her death in 1876 at the Butler Hospital (formerly the Butler Asylum for the Insane) in Providence, R.I. The patient, Emma Stuart, was the daughter of the famous painter, Gilbert Stuart, whose portrait of George Washington is on the dollar bill. There is very little primary information on Stuart. Two letters and a couple of short notes survive; we don’t even know the names of all of his children. However three children and a nephew died in either “madhouses” or insane asylums. The fact that Emma was at the Butler is already in the public record. That is, she is listed there and as “insane” three times in federal and state censuses and on her death record. There are no direct descendants of her or of Gilbert Stuart. I had the permission of a direct collateral descendant, four generations removed, with birth certificates as proof of descent, but I was denied access. With the help of a lawyer, we tried to get a judge to subpoena the record, but Butler hired three lawyers to oppose us. Finally I gave up because I didn’t have the financial resources to continue. The record on Emma Stuart is extremely important for several reasons. I have other evidence that would support the argument that Gilbert Stuart suffered from manic depression, an hereditary illness. If this could be shown, it would affect the attribution of portraits to him. That is, he rarely signed a picture, perhaps 12 out of over 900. Whether a portrait of George Washington is a copy by him or not has tremendous influence on its value. But manic depressives can be very uneven painters. Some of the so-called inferior works could actually be by him. I’m trying to put this succinctly. If Stuart was a manic depressive, this would also affect the meaning of some of his pictures. Although manic depression in Stuart’s day was part of a larger category called melancholia, it was more narrowly and properly defined by mid 19th century, in time for Emma Stuart’s diagnosis. If Emma was diagnosed as manic depressive, this would add to the evidence that Stuart was. The evidence on Stuart includes much documentation from friends and sitters, but it also includes the latest clinical studies on neurocognitive deficiencies connected with the illness. That is, Stuart’s drawing, at times, shows strange lapses that correspond with lapses found in the work of manic depressives so that these aberrations might now be explained. If it could be shown that Stuart was most likely a manic-depressive (or bipolar), this would also help in further understanding how the illness affected artists. This is still an area of research that is relatively young. The information on Emma might even mention her father or name Stuart’s unidentified “insane” son. It would also provide important information on how her illness was treated. All of this makes the point that there can be many unforeseen ramifications when access to an historical record is irrevocably blocked. Who would have thought that this even affects the value of a portrait of George Washington? Please take action on this so that the hands of historians are not tied. Do it for the people, no longer alive, who so carefully preserved this record. Let there be some benefit. As it is now, the Stuart family has the stigma of insanity, but manic depression does not have the same stigma and is treatable on an out-patient basis. I urge you to make this HIPAA change as soon as possible. The record, potentially a major source on Gilbert Stuart, could easily be destroyed in the near future.

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  9. This is way overdue, and its still not ‘on the books’ according to OCR.

    My father passed away on 9/2008, and I am still denied access to his records. I am one of his legal blood heirs, yet my rights as a family member, seem less important than his surviving 2nd wife, even though literally I was in my fathers life far longer than anyone else and also given that there are no documents on record, or anything in his will stating that I his son should have no legal right to said hospital records.

    We say this is America, the land of the free and the Country of justice and democracy, yet look how a family member is treated, and solely only because atm, that HIPPA lets surviving spouses have their way with grief stricken family, all because at least in my case because the ‘step mother’ doesn’t like me ( nor got along with anyone else , who consistently tried however and I have proof of it ) and that is enough to prevent me from having my own fathers records; just because she doesn’t like me and therefore can exact revenge against my rights. I find it hard sometimes to believe in America where justice for actual family is impossible. What were Patient health care rights administrators thinking, when they forgot to allow for family members of deceased ?

    I should not have to be typing here, explaining my story but here I am. It’s disgusting.

    I tried to do something about it, by calling OCR, and all they could tell me, was that ‘its in the process’ of being modified, with no clue as to how much longer it could take. Is that justice for all, or imposition forced onto a loving family member (me), by a viscous, gold digging step mother ?

    Our entire family knew she had psychological problems, but of course as my grandmother called it, my father remarried for sex and companionship. Yes, my 79 yr old grandmother actually said that to me face to face, and she was right. My father tried to do that ‘right thing’ by allowing my step mother to have administrator access, most likely not wanting my brother or I to have to deal with legal matters once he was gone, and I sincerely know with zero doubt that he would never have expected something like this.

    I reiterate, that I am his legal blood heir, and in my humble opinion, I have more rights that a 2nd wife ( in this instance at least), yet here I am having to make my voice known this way. It is appalling, and somebody somewhere, should be very embarrassed.

    I will continue to fight for my right to see my own fathers hospital records, because I deserve that right.

    The law, HIPPA, is at the moment, protecting a fugitive by allowing my step mother to STEAL what is rightfully mine, and I sure hope HIPPA, and those in Congress and OCR think really hard about that, as they forge forward to make this new modification law.

    I am sick and tired of my rights being stripped away from me. I was given them at birth, and no one, least of all someone who simply does not LIKE me should have the right to deny me access.

    I will continue to feel like a outcast of society, until I regain my rights.

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  10. Has the disclosure amendment been adopted?
    If yes, what is the effective date?

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