Monday 26 January 2015

Motivational Monday - Medical Genealogy

For those of you who read the digital genealogy magazine, "The In-Depth Genealogist" you may recall that I have written twice in the last year about medical genealogy[1], [2].

This last week I have needed to look back at my own medical records and whilst I have some of the data because I was there, therefore I know and remember! I have needed to prove what I know. There was, in additions to that some things that I could not be 100% sure of, my late Mum would have known, but that is clearly not an option and as I am still going through Mum's things accessing the data, should I have it is not going to be a quick solution.

I instead turned to my own medical records. Here in the UK medical records are kept in different places:
  • General Practitioner (GP) medical notes - depending on your age these might be a mixture of 
    • paper notes
    • computerised records
  • Child Health notes - these are essentially vaccinations administered through the mass immunisation clinics - Rubella for example these are kept from birth until 10 years past the leaving age from compulsory education
  • Hospital notes at each individual hospital
The information I needed to access was from Child Health and, as you might suspect I am older than 26 years and subsequently those records have been destroyed. I next contacted my GP. Did my notes pertain to anything specific to what I wanted to know? They didn't but I did obtain a list of all my vaccinations from 1970. Next I tried the long shot of my hospital records. They were destroyed at 9 full years post my last interaction with the hospital, although my maiden name was still on the system showing the records had been destroyed; so that was no good either.

Had the records been available the hospital in question would have charged an access fee of £25 and wanted me to complete a form and provide evidence as to my identity and entitlement. The child health records would have been the same. Each hospital can effectively charge their own fee within the constraints of the legislation that is applicable, which is Access to Medical Records.

Lloyd George Medical Envelope
Developed in 1911
Most General Practitioners allow patients to access their records reasonably easily. There is still paperwork and payment, but if you know the practice staff well and they understand the reason for requiring access they maybe nice and waive the fee.

Over the last twenty or so years hospitals typically offer you a copy of any letter they send to your General Practitioner and usually appointments are arranged through a postal system.

How many of you keep those letters? 

Those letters, even those simply giving you and appointment are worth keeping, (or scan and archive). They provide a snap shot of your life that others might find useful. As you might expect accessing medical records of others is problematic, but achievable if you are the next of kin, or the nearest next of kin an example might be the Grandchild of an deceased only child, and the records have survived.

Respecting privacy - we are all entitled to privacy; and quite rightly so. Just because you know something about someone else does not give anyone the right to share that information, regardless of how the information was acquired.  Those of us that work in the health professions are use to the constraints of confidentiality; and even in death there is the need for respect, privacy and confidentiality.

As an historian I also understand the need to extrapolate the information. To wish to preserve it for a future generation, especially if the original material might not survive or be accessible to a collateral line of descendants.

How can that be achieved?

There are probably a selection of ways that this can be achieved, but I can tell you how I have tackled this, especially as in the future with no immediate descendants I might not be in a position to provide any information or the information might be in a different country and time zone.

  • Scanned copies of all hospital letters and archived them 
    • Using key / tags to indicate the specifics (eg Heart, Asthma)
  • Give context to the clinics attended
    • Endocrinology could mean diabetic, it could also mean other conditions that are looked after within this specialisation
  • Copy of regular prescribed drugs (update regularly)
    • Indicate the conditions - some drugs are used for more than one thing - several Epilepsy drugs are used by pain clinics.
  • Give context to the conditions - in 1900 to be Epileptic was very stigmatised. 
  • Record (with a huge amount of care) any information you know about family members.
    • Cousin Margo (died 1986) was asthmatic - might be relevant if someone is looking at heredity issues (not conclusive) in the future.
    • Especially of interest if the condition is not recorded as the cause of death or not related to the cause of death.
      • In a 100 years will your descendants or collateral lines know you had a hip replacement in 1998?
  • Ensure that you have created a letter of authority and that it can be easily accessed.
  • Ensure that your nominated person (suggest more than one) knows where the archive is!
Are you motivated to look at your medical genealogy?



[1] The In-Depth Genealogist - Medical Genealogy - Issue 13, pp 29 - 36 ~ February 2014
[2] The In-Depth Genealogist - Medical Genealogy - Sad Next Steps- Issue 14, pp 57 - 61 ~ March 2014

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