Breakthrough for medical genealogy

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.


 
SOURCES

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).
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17 Responses to Breakthrough for medical genealogy

  1. D. Michael Elkins says:

    Now if only the medical providers would maintain patient records for that long. In my own work as a personal injury attorney I can rarely find one who has my client’s records from more than a few years ago!

    • Judy G. Russell says:

      I can understand that for sure, Michael, but the rule is very careful to say it is NOT a record retention rule — so no help in the new rule on that score!

  2. Pingback: Genealogical Privacy » HIPAA privacy rule eases access for medical genealogy

  3. Hello, May I re-post your article on my blog at http://inmatesofwillard.com/? Thank you!

  4. Pingback: “Breakthrough For Medical Genealogy” by Judy G. Russell | The Inmates of Willard 1870 to 1900 / A Genealogy Resource

  5. Jana Last says:

    Judy,

    I want to let you know that two of your blog posts are listed in today’s Fab Finds post at http://janasgenealogyandfamilyhistory.blogspot.com/2013/04/follow-fridayfab-finds-for-april-12-2013.html

    Have a great weekend!

  6. Joan Morales says:

    I have been told by an archivist at a major hospital in New York City which holds several records beginning in the mid 19th century that they have until September to comply. What is your response to this? Thanks

    • Judy G. Russell says:

      There is language in the rule that gives covered entities up to 180 days to bring their procedures into compliance with the new provisions. It’s a little outrageous for them to insist on that full period now — the only issue really is how to be sure someone died 50 years ago or more — but that’s what the rule allows.

  7. Judy, does this cover mental health as well? I have a great grandmother who was in a state institution at the end of her life and we’d like to know why she was there.

    -Marian

    • Judy G. Russell says:

      It does cover those BUT… and this is a big caveat… those records are often covered by additional and more restrictive state laws which are not affected by this rule change. All the rule does is remove the federal roadblock to access.

  8. Pingback: “Breakthrough For Medical Genealogy” by Judy G. Russell – HIPAA 2013 | The Inmates of Willard 1870 to 1900 / A Genealogy Resource

  9. Linda Little says:

    Hi Judy,

    My g-g-grandmother was in the Boston insane asylum for almost 25 years, she died in 1932. The records are at the Massachusetts State Archives. I have been told that they are protected by MA State law Chapter 123, section 36.

    I was told that I have two options – (1) open a probate estate file and have myself appointed as administrator of the estate as long as no other heirs at law object or (2) file a court order, essentially suing the department of health in either state, superior or district court and “hope” that the judge thinks that genealogy/documenting my family medical history is a sufficient reason to allow me to see the records.

    Any recommendations/thoughts of what route would be easiest and least expensive? Should I hire an attorney to help?

    Thanks

    • Judy G. Russell says:

      I’m not at all familiar with Massachusetts procedure, Linda, so consulting with someone who is, would be a good step. You may find a clinic at one of the law schools or the like who can give you some basics. That being said, my guess is that the probate route might actually prove to be the easiest and least expensive. But I would definitely consult with a Massachusetts attorney to get a better feel for whether the probate courts there are amenable to opening a probate so long after a death.

  10. Greg Burns says:

    Hi Judy,

    I had a relative, my great grandmother’s brother, Martin Farrell who died at Central Islip Hospital 10 December 1904. I have his death cert but there is not indication of any place of burial nor the name of the undertaker who may or may not have claimed his body for burial. I was told that if this was the case that he was likely buried on the hospital property or worst case, his body was used for medical experimentation. Martin died at age 65 of likely mental illness and its complications. This means to me that he had early-onset dementia as did my grandfather and two of his older brothers, all dying in their 60′s. I am now in my 60′s as well and I would LOVE to know just what the problem was, the diagnoses, treatment etc. I am a direct descendant of the Farrell family via my father. It is obvious that in knowing the situation with my Farrell/Burns ancestors it would provide a history of just how prevalent this mental illness problem is in my family. I have two children to whom I would like to pass this information. It is only fair to them in the long term. Getting back to Martin Farrell. In calling the museum rep at Pilgrim Psychiatric Hospital, custodian of the CIH records, there is no record of Martin Farrell being buried there. I am not comfortable with this info as I believe he is indeed there and is burial was not recorded. I have written to the Pilgrim Hospital records area well over a month ago and so far without any response. I am hoping they will consider the fact that Martin has been dead well over 100 years and provide me with his records. Any help or direction would be much appreciated. Thank you for your time and interest.
    GB Jersey Shore

    • Judy G. Russell says:

      Greg, your best bet would be to speak with experts in New York research such as members of the New York chapter of the Association of Professional Genealogists (see the search by location list at the APG website) and/or those who have credentials as Certified Genealogists from the Board for Certification of Genealogists (see http://bcgcertification.org/associates/index.php) and see if you can get guidance in dealing with these specific repositories. There is no federal law barring your access to these records since your great uncle died more than 50 years ago but there may be state laws you need to contend with. Getting help from someone experienced with these records would be a great help.

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