How do I organize my medical records?

[hwy11poz]

I hope this is the best place for this, if not I hope one of the mods will move it for me.  I am getting more papers to keep up with (insurance, medical bills, test results, etc.) and I have no idea what is the best way to organize them or even if I need to keep some of them.

Could some of you who have been dealing with this longer give me some ideas about what you keep, how long you keep it, and how you keep up with everything? Thanks in advance!

[Miss Philicia]

Well, I've seen some mighty anal retentive folks on here with their medical records and keeping copies.  Personally I kind of poo-poo all of that, though I do keep a copy of my most recent labs on hand to give to any specialist or dentist I see that might request them.  Otherwise I throw everything in a folder in a drawer at my home desk, and then after it sits there a year it gets thrown in a storage box in a closet.  All of these things are kept by the people that generate them if you ever need a copy. And I'm sure the stuff I have in my storage box only goes back 7 years or so.  I know I have some files of things in a basement in Brooklyn for the years 1993 - 2003 but it's not like I need it.  The only thing from that period that I've actually been specific about keeping are my lab results from my first year of diagnosis, and that's mostly because it's the only thing that documents a <200 cd4 count, and once having this on hand cut through red tape in NYC when I had to deal with some city bureaucracy, but you know things are all kept electronically now more efficiently than they were 17 years ago.

Personally my advice is to pay attention with things that have no strict documentation -- get a composition notebook to record diary notes when you're dealing with anything verbally over the phone with your doctor's office, insurance people, case managers and what not.  Always record by hand the date and who specifically you spoke with and what was discussed.  Of course, you could do this by some electronic method on a PDA or computer if you prefer, just make sure to maintain a back up of it.

[madbrain]

I hope this is the best place for this, if not I hope one of the mods will move it for me.  I am getting more papers to keep up with (insurance, medical bills, test results, etc.) and I have no idea what is the best way to organize them or even if I need to keep some of them.

Could some of you who have been dealing with this longer give me some ideas about what you keep, how long you keep it, and how you keep up with everything? Thanks in advance!

Personally, I hate papers, but I know they can often be useful in the future. Recently during a background check, I had to provide a 6yr old pay stub to prove my start date with a previous employer that didn't keep good records. That's just one example but I have had many other occasions to provide old documents.

What I do is scan all the papers that I think I may need, and then I put them into the shredder. Using Paperport and Omnipage OCR software, the output is a searchable PDF file. That includes all my medical tests, receipts for big items for warranty purposes, etc. And of course I keep multiple backups of my hard drive. It helps to have a good, fast machine that does duplex (dual-sided) scanning with an automatic document feeder. I use a Brother MFC-9840CDW.

And of course, I try to opt out for online delivery of documents whenever I can, but that's not always possible for medical records.

[skeebo1969]

     Just do like I do.  I have HIV records in my glove box, under the seat, in my book bag, stuck in my visor..   Bills from doctors that never made it from the mailbox to the filing cabinet are used as scratch paper for my 2 yr old to draw on...  I even have a lab report from 4 yrs ago that my then 3yr old wrote in my favorite color of green,  I LOVE YOU DADE... which being from Dade County Florida left me a bit perplexed.  I like to think she meant daddy.

    Seriously though, when I was really good at this stuff, I use to keep a two drawer filing cabinet.  The top was current stuff and at the end of the year I would clean it out.  I would place anything of importance from the previous year and place it in one of those Ziploc gallon storage bags.  Then I would write the year on it and place it in the bottom drawer.  After 3 years I would throw it away.

[leatherman]

in sept when I was packing for the move from OH to SC, I realized I had 19 years worth of HIV/AIDS paperwork. In all that time, I've never had to go back to use any of it . Current labs, current disability earnings printout, etc are all I've ever used.

So I keep the pamphlet C Everett Koop sent out, one paper from the hospital for each of the two times I was in with an OI (and the wristbands!), a couple papers from Hospice when Randy died, and from when Jim died, and I threw all the rest into a great big garbage bag so I didn't have to load that useless stuff into the UHaul.

[J.R.E.]

Hi,

Well, I'm a records keeper. As long as the space is available, I will continue to save , what I feel are important papers. Nothing anal about it.

I still have the original bloodtest from 1985, confirming my diagnosis.  I keep this in a safe place, and protected, since it's getting old looking.I have the original emergency room papers, when I went in for shingles in 1989.

Since I started on meds in 2003, I have kept all copies of prescriptions and their receipts.  These are sorted by month ( Jan through December) and rubber banned together , by year.  The stack is about 10 inches tall now.  And I realize I can get rid of all but that past year, But there may come a time when you may want to check back, and reference, to see what medications you were on, and for how long. So,  I am going to hang onto them.

Also, if your able to claim medical expenses on your taxes, it good to keep ALL receipts.

I've kept all my blood test results, and the are also filed by date and year taken. Anything, correspondence with doctors, ( letters etc) Health Dept, and Ryan White are all saved also.

Anything related to MRI and catscans, surgery, Dermatalogy, Neurology, I have also saved and filed. if you going to see surgeons, and different specialists, I'de like to look up and remember their names,.  I also put notes as to how I was treated by these professionals.  It may help in the future, if you need their services again.

If you file properly, a lot of this does not take up that much space.  And, as I mentioned earlier, I know there are some things, that I can probable toss, but not yet.


Ray

[minismom]

I'm one of those anal retentive people.  I've kept everything - and I do mean EVERYTHING.  I have 5-subject notebooks filled with my notes from doctors' visits, questions I wanted to ask (and their answers), phone conversations.  I also have a box(es) of files and a file cabinet with copies of prescriptions, lab slips, test reports, therpay session notes, and appointment cards.  They are organized by type of doctor (at one point, Mim had 13 different doctors in 3 states) with the oldest stuff in the back.  When the file folder gets full, it gets moved to a labeled bank box with the contents marked on the outside. 

I hate clutter.  I hate paperwork.  But, somehow, I just can't make myself get rid of the medical stuff.

Mum

[john33]

just learnt a couple of good tips here.  Scanning the labs etc onto my computer and gaurding a backup and keeping notebooks of questions/answers and doctors vists.

[J.R.E.]

just learnt a couple of good tips here.  Scanning the labs etc onto my computer ...

Me too ! I never thought of doing that.  Back it up , and place it on CD !! Great idea !

Ray

[Miss Philicia]

I knew that this thread would begin to amaze me, and I was right.

[Basquo]

Put them in a notebook or some sort of binder with divider tabs, in reverse chrono order.

I actually use a chart cover and dividers from my hospital, with tabs  like "Lab" "Imaging" "Operative" "Medication" etc. It's helpful when I see a new doctor. He can just flip to whatever section and see the latest results right on top.

[hwy11poz]

Wow! What a variety - I think I will end up with a combination of all these. I hadn't thought of scanning and burning to a CD though - that does sound like my style. Although I'm sure there are some papers I will keep the original of - along with my most recent ones.

Thanks, everyone!

[BlueMoon]

I use three folders, the kind with pockets in them, and sort everything among them.  One is medical records, including lab results, prescriptions, and invoices of paid bills (I itemize my income tax deduction).  One is for health insurance, and the other is for all things ADAP.

So far it's been easy to find what I need, but after two-plus years of dealing with The Curse, the folders are bulging and it's time to purge them of non-current items.  Probably most will get shredded and the rest put in a drawer in the attic.

[Miss Philicia]

I rinse out all of my pill bottles when they're empty, steam off the prescription labels, and then make handcrafted room dividers and wallpaper out of them.

[Assurbanipal]

If you haven't been seriously ill before, you may want to hold onto all the paper for a few years to see what you really will want to look back at.

But a lot of the important information is going to be hard to find in all that paperwork unless you summarize it, and eventually you will probably just want the summary of everything except (maybe) lab reports.

You might want to start setting up a summary you can take with you to the doctor.  I keep mine on a spreadsheet.  The first page lists each doctor, what I see her/him for, phone number, fax number/email address, physical address.  It also lists each drug I am on, what dose, frequency, when I started it.  Even more important is the list of the drugs I have stopped which has the same info, the stop date and why I stopped (allergies, side effects etc).  You would be amazed how quickly you can forget why and when you stopped a particular drug.

Page two has the list of tests and vaccinations -- when I got the last one, which doctor gave it to me and how often they are supposed to happen.  Some tests are quarterly, some annual -- some vaccinations annual some every 5 years ...

Page three has lab results over time -- like the "graph my lab"s function on here. 

Its confusing, so for starters just keep the stuff.  But once you are comfortable with where you are at you can throw most of it away if you have a good summary.

Good luck
A

[hwy11poz]

I rinse out all of my pill bottles when they're empty, steam off the prescription labels, and then make handcrafted room dividers and wallpaper out of them.

Now that's the most interesting thing I've heard today! LOL - I just hotglue the large ones to the bottom edge of a shelf in the shop and keep screws, nails, and washers in them. And my old CD/DVD spindles get the same treatment (just upside down and with a hole in the original top for twine and string for my weedeater).

[njrn55]

\Hi there, hwy11:

Medical records is a very touchy issue.  I assume that you are referring to your labwork, medication regimen and other test results.    You should keep copies of your labs for at least two years, because one series of lab reports in and of itself is only a "snapshot" of your levels, etc. at the point in time that your labs were drawn.  The "snapshot" of labs is important,  but what is more important is how your labs are trending - and the only way to see that is to save your copies.  I don't advocate making graphs, etc. although they do tend to show trends easier than a million papers.  Your physician or health care provider should be looking at your trends and comparing them to your medication regimen.  They should also be looking at your liver studies to make sure that your liver enzymes are within normal limits given the meds that you are on.  I keep my labwork in a file under lock and key with a copy of my medication regimen.  Do you go to the same physician for everything?  In other words, is your doctor for HIV the doctor you use as your primary physician?  Some docs will do that for patients and some will not.  I am fortunate in that I am able to use him as my primary physician as well as my HIV doc.  I have also designated someone to destroy my medical records and medications if and when anything should suddenly take me from this planet.  Remember also that your doc has copies of your records since you have been going to him/her, so there is always a backup there if you should lose something.  Some docs are reluctant to give you copies of your results, but it is your right as a patient to have a copy of what you want out of it.  If you would like to discuss this further and more privately, let me know and I will send you my pvt e-mail and we can converse that way.

[leatherman]

I don't advocate making graphs, etc. although they do tend to show trends easier than a million papers.

Oh! But that's another reason, I don't keep all those papers. (Since I don't need them for insurance or tax purposes. Plus I'm very thankful that all my other numbers (ie BP, liver, cholestrol, etc) are all excellent!) Once you enter your data into a handy spreadsheet (or the "Graph You Labs" function here at AM) then you have all your data in one place instead of on all those papers. Then you can make a handy-dandy chart to actually see the "trends".

Just like the chart I use in my sig line!


After almost 2 decades (18+ years) and with over 80+ lab results, if I listed all my numbers my sig line would be a mile long, and if I kept all the papers, the stack would be a 1/2 mile tall. (I've seen the huge book/tome my doctor has of all my files. LOL) It might be okay to track your trends by a stack of papers; but if your going to live another 30-40 yrs, I think tracking it through a spreadsheet and charting it out is a lot more convenient that sorting through reams of paper. I have found my doctors over the yrs (4 so far) have never once graphed my labs. I regularly take in a print out, so when we talk we both have a visual aide of my trends.

At one appt. my doctor was all a-tither about a VL blip of 500. I had a graph of my numbers (broken down into the last 5 yrs) that showed that blip was actually the 5th in a string of blips and was the smallest one! Each blip starting from 5000 to the 500 (which the doctor had noticed) had been decreasing every time. Of course, in the grand scheme of things, I was less concerned about all of those blips. By looking at my chart, I can see that those blips which occurred within the last 6 yrs are nothing compared to the radical lab results I had earlier in my diagnosis when I had PCP, pnuemonia, resistance issues, and multiple med regimen changes. As long as my red (VL) and green (cd4) lines aren't crossing, and that red VL line stays near the bottom of the graph, then I'm a happy camper.

[wow1969]

I've been looking for a medical program that would not only help me track my HIV but would also help me track all my medical history ... so far the only things i've found require a monthly payment .. i just want to buy the program and use it ...

Anyone know of a program?

[Assurbanipal]

I've been looking for a medical program that would not only help me track my HIV but would also help me track all my medical history ... so far the only things i've found require a monthly payment .. i just want to buy the program and use it ...

Anyone know of a program?

I looked 2 years ago -- google "personal health record software" and you will get a lot of options. 

(In the end, just keeping a spreadsheet was enough for me, though...)

[wow1969]

thanks .. i've started a spread sheet but i would like something a little more formalized ... i'll do the google search .. thanks again ...