“Breakthrough For Medical Genealogy” by Judy G. Russell – HIPAA 2013

Great article by Judy G. Russell, re-posted with permission. I have contacted the New York State Office of Mental Health asking their position on this new ruling. Hopefully, they will respond soon.

Breakthrough For Medical Genealogy

Posted on April 8, 2013 by Judy G. Russell One For Our Side

There’s been a major breakthrough in records access for those of us with family medical issues that we research in part through our genealogy.

Quietly, without much fanfare, the federal Department of Health and Human Services (HHS) has finally come around to understanding that closing medical records forever, even after the death of the person treated, isn’t the way to go.

It adopted a new set of rules earlier this year, effective just two weeks ago, that opens medical records 50 years after the patient’s death.

The change — first proposed nearly three years ago1 — came in an omnibus Final Rule adoption governing a vast array of issues under the federal Health Insurance Portability and Accountability Act (HIPAA) designed primarily to update personal privacy rules in light of technological changes in medical recordkeeping.2 The rule was adopted in January and became effective on March 26th.

As far back as 2003, archivists had complained to HHS about the old rule, under which personal health information was to be protected forever and only disclosed even after the patient’s death only if the legal representative of the estate authorized it.

In 2005, Stephen E. Novak of Columbia University had quoted from those earlier complaints in an HHS conference, explaining that “certain historical, biographical and genealogical works where the identity of the individual is the whole point could not be written, such as the Pulitzer Prize-winning A Midwife’s Tale, based on the late 18th and early 19th century diary of Maine midwife Martha Ballard.”3

Nancy McCall of the Johns Hopkins Medical Institutions told that same conference that “a number of state archives have acquired the records of defunct hospitals in their states and do not know whether they are covered entities. This is especially important for mental hospitals and TB hospitals that have closed.”4

All of those participating pleaded for clarity — and for access.

The new rule is, finally, the HHS response.

In its rulemaking, HHS recognized the problems inherent in “the lack of access to ancient or old records of historical value held by covered entities, even when there are likely few surviving individuals concerned with the privacy of such information. Archives and libraries may hold medical records, as well as correspondence files, physician diaries and casebooks, and photograph collections containing fragments of identifiable health information, that are centuries old. Currently, to the extent such information is maintained by a covered entity, it is subject to the Privacy Rule.”5

It noted that the “majority of public comment on this proposal was in favor of limiting the period of protection for decedent health information to 50 years past the date of death. Some of these commenters specifically cited the potential benefits to research. A few commenters stated that the 50-year period was too long and should be shortened to, for example, 25 years.”6

Based on its review and the public comments, HHS concluded:

We believe 50 years is an appropriate period of protection for decedent health information, taking into account the remaining privacy interests of living individuals after the span of approximately two generations have passed, and the difficulty of obtaining authorizations from a personal representative of a decedent as the same amount of time passes. For the same reason, we decline to shorten the period of protection as suggested by some commenters or to adopt a 100-year period of protection for decedent information.7

So, as of the 26th of March, HIPAA’s definition of “protected health information” expressly excludes information regarding “a person who has been deceased for more than 50 years,”8 and covered entities need only comply with HIPAA “with respect to the protected health information of a deceased individual for a period of 50 years following the death of the individual.”9

Now the fact that the federal government isn’t standing in the way doesn’t mean that all of us with family health issues can rush out and expect to be given immediate access to those old health records that may tell us so much about things we face today. The feds have never been the only player in the privacy game — state laws may also restrict access to health information.

But it’s a major breakthrough to have the federal government finally move out of the way of access to records of critical importance.


Tip of the hat to Ron Tschippert for alerting The Legal Genealogist to the rule adoption!

  1. Notice of proposed rulemaking, 75 Fed. Reg. 40868, 40874 (14 Jul 2010). 
  2. See “Modifications to the HIPAA Privacy, Security, Enforcement, and Breach Notification Rules Under the Health Information Technology for Economic and Clinical Health Act and the Genetic Information Nondiscrimination Act; Other Modifications to the HIPAA Rules,” 78 Fed. Reg. 5565 (25 Jan 2013), PDF version, U.S. Government Printing Office (http://www.gpo.gov/fdsys/ : accessed 7 Apr 2013). 
  3. Minutes, 11-12 January 2005, Subcommittee on Privacy and Confidentiality, National Committee on Vital and Health Statistics, HHS.gov (http://ncvhs.hhs.gov/ : accessed 7 Apr 2013). 
  4. Ibid. 
  5. “Modifications to the HIPAA … Rules,” 78 Fed. Reg. 5613-5614. 
  6. Ibid., 78 Fed. Reg. 5614. 
  7. Ibid. 
  8. 45 CFR §160.103. 
  9. 45 CFR §164.502(f). 

23 thoughts on ““Breakthrough For Medical Genealogy” by Judy G. Russell – HIPAA 2013

  1. I am one who has tried unsuccessfully to access my grandmother’s records from 1959. I have even had conference call with NYS Commisioner of MH, and have asked support from our congressmen. Please advise. Thank you


    • I have also tried to obtain the medical record and photograph of my great-grandmother from the Greater Binghamton Health Center which holds all the records from Willard. I was denied. Last week, I emailed the NYSOMH asking their position on the new HIPAA ruling but they have not responded. In my opinion, they’re not going to comply until they are forced to do so. I think they are elitists who have been given too much authority as they have classified the names of patients buried in anonymous graves in state cemeteries as medical records so that no one can access this information, unless, of course, you happen to be a psychiatrist. Why would any agency of the state have the right to keep anyone’s death a secret? I’m trying the best that I can by having my state senator introduce a bill to the NYS Legislature requiring the NYSOMH to release the names. Maybe once that bill (S2514-2013) becomes a law in NY, they will open the records. Who knows? I’m sorry that I don’t know what to tell you at this point but I will keep you posted. -Lin


      • You are totally right. It is beyond comprehension that records this old need to be protected, unless of course they are hiding what occurred within those buildings.
        My grandmother was given a series of EST in her town. They believed she suffered fro depression. The EST left her debilitated to the degree that she was placed in Willard, given more EST, until 7 months later, a visiting neurosurgeon diagnosed her as having a brain tumor. She underwent a nine-hour surgery at Roswell Hospital in Buffalo, NY, then died shortly after surgery. She had a frontal lobe brain tumor that extended the width of her forehead, about the size of an orange. Bottom line: EST caused the tumor to grow.
        I have gone so far as to tell these greater powers that names of personnel can be deleted and any comments of a personal nature can also be extracted. I simply want to know how my grandmother spent her days. I am writing a family narrative to which she is central.
        I learned that I could ask my physician to send a letter requesting the record, to which they furthered by saying they were still not required to release the records and my doctor would have to decide whether or not he would share these still confidential records with me bore runaround. Please keep me posted. Rose


        • They just don’t want to be bothered with us. Like I said, they are elitists. So now we know why the Mental Health System is broken. I actually did go through the process of having my doctor request information on behalf of my ailing mother, who is now deceased, and they sent my doctor a letter, six months later, stating that they couldn’t find the record. Great excuse! Believe me, I’m sick of writing letters and calling people on the phone. My great-grandmother died at Willard in 1928. I wanted to know her diagnoses, and like you, I wondered how long she was there, how she was treated, how she died, but most of all, I wanted her photograph. Thanks for writing, Rose! Keep in touch!


  2. I was checking to see if there had been any progress on this issue since your original posting of April 11. I find it very distressing that you are still running into brick walls. I ran into my own brick wall when I attempted to get my great-grandfather’s records from Manhattan State Hospital. He was admitted in 1901 and died there in 1945, in his eighties. Fortunately, my grandparents gave him a decent burial in a private cemetery with his wife and son. I obtained a certified copy of his birth certificate from NYC Vital Records, but the cause of death is “confidential” and the only reason given is “natural causes”. All I want to know is his diagnosis. There were two major reasons why people are and have been hospitalized for life – usually either treatment-resistant major depression or schizophrenia. If he was in fact schizophrenic, it would explain a few “family mysteries” as schizophrenia can be associated with a couple of other odd syndromes. I also wonder if he had been lobotomized, and the state wants to cover that up. I am retired, but am a clinically trained social worker, trained in psychiatric hospitals, and so am fairly knowledgeable about this. As a New Jersey resident, I’m not sure if I have any clout at all in New York State should I try to enlist congresspeople, etc. I wonder if there are enough people like us out there to make up a class action suit – I have not looked into this at all, but it’s crossed my mind……Thanks for all the work you do – the amount of information you find and write about is truly amazing.


    • Hi Dale, We’re still waiting for bill S2514-2013 to pass in the NYS Legislature so there is hope. I share your frustration! I was interviewed on May 18th and the video piece was seen on YNN, a cable news channel that covers Rochester and the Finger Lakes. Hopefully some good will come of it. Please keep in touch and don’t give up hope! -Lin


    • In response, I must tell you that I have given up hope of ever obtaining any information on my grandmother while she was hospitalized at Willard. I, in fact, know pretty much all there is to know regarding the medical treatment my grandmother received; I was simply interested in her day-to-day condition, essentially wanting to know how she spent her days. The response I received from NYSOMH was that they couldn’t even tell me whether or not she was ever a patient at that facility! I had a conference call with the commissioner and one other person. I contacted 2 NYS representatives, one of which referred me to the other and bottom line was that it would be an impossibility. I spoke to a co- author of Suitcases in the Attic, asking how they obtained permission to review patient charts. Apparently, writing that type of book grants one certain privileges. All in all, I have decided not to pursue this. However, if it appears that there is a definite breakthrough, I would re-establish myself. Thanks for telling me your story.


      • Rose, Don’t give up yet! I’ve been trying for 5 years to get the same information as you. I agree that the OMH has not been the least bit helpful to relatives of former patients. They only respond if you have a Ph.D. after your name and it’s not right! Let’s give this a chance and see what happens. I understand your frustration and I thank you for sharing! -Lin


        • Well, I have a Ph. D. after my name, but my academic field of study doesn’t involve access to these records, my own family history research does, and I’ve run into the same barriers you describe. My 3rd Great Grandmother was a patient at the NYS Lunatic Asylum in Utica in the 1840s–about 170 years ago! I was denied access to the patient case files at the NYS Archives by the NYS Department of Mental Health about three years ago since I wasn’t doing the sort of academic research they view with favor. I’m glad to hear about changes in the federal laws and hope NY State will pass legislation to make things more accessible soon. On a different, but closely related topic, does anyone know anything about a cemetery associated with the NY State Lunatic Asylum from the 1840s? I have a reference to a person who died while a patient at the Asylum which says he was buried in Utica, but doesn’t specifically say he was buried at the Asylum.


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  4. I had a grandmother who went to hospital when she was 18. I’m sure she bipolor or post depression after giving birth to two childern in one year. I only want to know when she went it and when she came out.


  5. Curious as to whether anyone has been to the Cemetery @ Middletown State Hospital? I have a death Certificate which states my loved one was buried there but have yet to find out the Marker # . Is the Cemetery accessible?


  6. Good morning. I came across your blog and I really appreciate your hard work. Like you, I have met with the same frustration in accessing medical histories stored in the New York State Archives. My Great Aunt was a patient at the Buffalo State Asylum over 123 years ago – I have been searching for her for over 18 years. Ironically, she and I share an uncle who passed away and is one of those buried in an unmarked grave at Willard. I am a former mental health professional myself and when I requested my Aunt’s discharge summary I was denied. I am praying that those in Albany see the light and reform the current law. Thank you again for bringing this issue to light.


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  8. I have been working on our family histoy for awhile now. My Great great grandmother spent her last 4 yrs at Willard State Hospital, Ovid, NY dying in 1900 and buried locally. I tried some time ago to get medical records or any records concerning her and was denied. it’s bee 115 years since her death, can you give me some direction as to how to achieve my goal?


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  10. I am so happy to find this blog. I am searching for information on my great grandmother who was an “inmate” at the Monroe County Almshouse (Insane Asylum). I don’t know the exact date when she was admitted. But the 1930 census has her listed as an inmate there and she died in 1934, buried in Mt. Hope Cemetery. Any advice you can give to help me find out more about her life there, her diagnosis, etc. is greatly appreciated.


    • Please check out this link from my Genealogy Links page; Mt. Hope Cemetery: http://rbscp.lib.rochester.edu/mthope/search. This will tell you where she is buried, date of burial, and when, where, and why she died. Also, send for a copy of her death certificate as well (NYS Vital Records also located on the Genealogy Links page). It usually tells you what the person died of, her parents, place of birth and death. Keep searching, it takes a while to put the puzzle together! -Lin


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