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View Diary: Monday Night Cancer Club: Milestones and Benchmarks (41 comments)

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  •  hola, mi amigas y amigos (4+ / 0-)

    good to see everyone!  

    i'm working on something for MNCC about how to copy your entire medical record to a zip drive or USB (less than $10 for 16 GB) and a true lifesaver for me, but i have some questions, and would really appreciate any thoughts you may have.

    the two considerations are how comfortable people are with scanning documents and saving to zip drive (it's easy if you know how and feel well enough . . . but when you most need those records, chances are you don't feel up to it).

    if you cannot do it yourself, then release of medical records to your health care surrogate or someone you trust would require your consent in writing.  (required by HIPAA law on protected health info and confidential nature of PHI.)  

    depending on the state, this person may need a temporary power of attorney to access records and copy for you to a tiny storage device you can fit into a pocket.

    final consideration:  what records are necessary?  

    anyone with cancer is likely going to have pounds of paper that compose a "chart."  with every hospitalization, more is added.  some isn't really critical to the patient (like the pharmacists' counts and sign-off records, many years of labs within normal parameters, many of the nurses' notes on uneventful days.)  

    how can we know what is important or might be  later?  ideally, your doctor or staff or the hospital staff could help with that.  

    i started out with "unusual" labs, PCR, bone marrow, all the imaging and x-rays, but added more later in my doctor's office.  this may be different for everyone.

    i still think it's very useful to have this info at hand with a password, preferably encrypted, 'cuz you never know when natural disaster may strike, and waiting a month for paper records from an out of state hospital can seem like eternity.

    sorry, Katie, if this is OT.  my goal is to simplify things like milestones and benchmarks, 'cuz my memory isn't real reliable. ;)

    •  Great Question (5+ / 0-)

      I am a member of Kaiser and their rules are simple and easy.   Almost 10 years ago they started the process of going electronic with all patient records.  they now are nearly fully electronic so for them providing a thumb drive is easy.  The thumb drives they provide are all pass word protected so that not anyone can view your records thus protecting your medical privacy if you should lose it.  

      Most doctors offices and hospitals have a contractor come in and scan records of patients especially if the records are extensive.  It happens all the time.  but it does cost money for the service and it is not always perfectly responsive to time sensitivity issues.  

      The standard that Social Security Disability uses for most cancer patients is they want to see medical records beginning 3 months prior to the onset of your condition. I will use my situation as the example.  

      On Mar 6, 2012 I saw my doctor for the first time because I had a cough.  That doctors visit resulted in further follow up visits with specialists and investigative procedures resulting in my diagnosis of lung cancer on April 6, 2012.  So when I filed my claim for disability they requested copies of my medical records beginning January 1, 2012.

      I hope this helps you Avila.

      Life is not a problem to be solved but an adventure to be experienced.

      by DarkHawk98 on Mon May 06, 2013 at 08:54:50 PM PDT

      [ Parent ]

    •  These are all fabulous questions, and the answers (4+ / 0-)
      Recommended by:
      Avila, ZenTrainer, Sara R, ladybug53

      to them will make your job much easier. Let's hope that the night owls/left coasters will weigh in on them now; I wouldn't hesitate to repost them next week (and later still) if need be.

      You are quite right, in many ways these are the benchmarks and milestones that matter the most.

      My own cancer center has really gone for computerized records in a big way recently, so I would have two major tasks to address first. The DPOA for HC I do have, and that definitely should be scanned in for ready availability. But I should also log in to the darn patient portal they have for records now to see how current/accurate they are compared to the records I have on hand. So that's where I'll start.

      After that, I'm thinking of keeping a running and updated version of tests (scans for me and blood results). Not much else gets done on me. I don't get a copy of the consult reports, nor do I have a copy of my surgical report, about which I am intermittently curious.

      That's all that comes to mind for me so far. Thanks so much, Avila, for tackling this very valuable subject. I look forward to your report.

      Some DKos series & groups worth your while: Black Kos, Native American Netroots, KosAbility, Monday Night Cancer Club. If you'd like to join the Motor City Kossacks, send me a Kosmail.

      by peregrine kate on Mon May 06, 2013 at 08:55:08 PM PDT

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    •  Ok, here is input from a Luddite (4+ / 0-)
      Recommended by:
      Sara R, peregrine kate, ladybug53, Avila

      ~don't scan or zip
      ~don't care who has access to my medical records
      ~imaging seems outdated quickly
      ~no one seems to be able to read the notes except the one writing them.
      ~I can sum up my condition and history in 2 minutes including allergies
      ~when I reach the point where I can't remember any of this my therapist seems to think I won't care.

      But then I am not one for milestones, benchmarks or memorablia. I was working with a woman who is, well, a hoarder. Maybe this is because of brain cancer but it seems to me she has more than 11 years worth of stuff in her apt.

      She keeps getting kicked out because of hoarding. She asked what I did with old photo's and was horrified when I told her I throw them away.

      I do see a day when all medical info is connected. (Isn't it with Medicare?) And that seems efficient, but you know I have cat videos on YOU TUBE to watch and have no time to organize such things. ;-)

      Tracy B Ann - technically that is my signature.

      by ZenTrainer on Mon May 06, 2013 at 09:47:09 PM PDT

      [ Parent ]

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