What to do with your medical data

I’ve been in several conversations lately about the need for patients to get their medical records and data.

  • I wrote a post recently about the need to read our medical records as I found 16 errors in the write-ups from 6 visits with a doctor.
  • Julie Ryan asked me to write a guest post for her blog www.countingmyspoons.com about how to obtain your medical records and the letters the specialists send to your primary care physician after reading about my experiences with these things in my book (the guest post will appear later this spring).
  • I was in a twitter conversation today about the cost of obtaining records.

During that twitter conversation I was introduced to e-Patient Dave.  As I begin to look through his information, I saw a TED talk he gave with the phrase

“Give me my damn data because you people can’t be trusted to keep it clean.”

That is exactly the point of the next step – first you obtain your records (data) and then you organize and clean them up.  I did just that before I went to Philly and when talking about it to several people I’ve been encouraged to share how I did it.

The goal was to summarize data, symptoms and treatments from 2008-2014 in a concise yet comprehensive manner to guide my first appointment in Philly.  I was flying half way across the country, spending time, energy and money to see a very busy man.  I wanted to make sure that I used our time wisely – not wasting it or being inefficient – but it was also very important to me that he had ALL the available information.

I had a stack of medical records from 3 rheumatologists, 1 neurologist and 1 ophthalmologist from 2 different medical systems (one in Topeka and one in KC) and  a ton of lab work to sort through.

This was what I came up with:

1.  Spreadsheet of lab and test results.  Each tab in the spreadsheet was a different category – there was “autoimmune-related lab work” (antibody tests, etc.), “CBC”, “Liver function”, “Urinary Analysis”, “Tests” (such as X-Rays and MRI’s), etc.  On each page I listed the names of the various tests down the left hand side and the dates across the top and filled in the results.

 You can see what I created here (I removed the actual test results and put “xx” in place of any actual results so that you can see how I filled it out): Lab work

2.  Spreadsheet of symptoms.  The column headings were: Symptom, When it first started, Frequency of symptom, Low range of severity, High end of severity, Most common severity level, How much it interferes with personal/work/social life, Description and Treatments.

As I’ve talked about before, I think the “Rate your pain 1-10” thing is crazy and mostly ineffective, so I created my own “key” for severity ratings and defined that key up at the top of the spreadsheet.  My “Key” includes the following severity ratings:  1 = none, 2 = some but can be ignored basically all the time, 3 = can be ignored for short times if really involved in something else, 4 = can still do something else but cannot ignore, 5 = can’t do anything else.

You can see my symptom summary here: Symptoms

These two documents provided a concise view of lab results (without flipping through over 200 pages of medical records print-outs and trying to compare the same tests completed at different times and by different lab) and a complete summary of the symptoms that concern me (so that I didn’t forget to mention something while I was there).

However I felt that I still needed a timeline aspect – something that would show the progression of when things started, when treatments were tried, etc.

I was a high school teacher and author of a high school chemistry textbook as well as someone that worked with, studied and tries various educational technologies.  So I knew there had to be some visual timeline creation web application out there somewhere just waiting for me!

There are a lot – mostly aimed at educational use (students create timelines of various things for class assignments).  Many are free.  Many have various tools and features that I liked but most were missing something or other.  A Google search for “timeline creator” results in lots that you can try out.  I decided to use http://www.preceden.com for mine.   You can try it for free but you can only add a certain number of things before you have to pay for it ($29 one time fee for unlimited use forever) – there are many that you can use completely free without any limits, but I chose this one because it had the features I wanted – mostly the ability to add “layers.”  It also displays all the data you added in list form below the graphical form timeline.

3.  My timeline: Some of my symptoms have been around for so long (and probably came on subtly – what I call symptom creep) that I’m not sure when they started (dry eyes and dry mouth – I know they were at least before 2008 because that’s when I started complaining about them to doctors), so I just started everything at Jan 1, 2008 if they started before then.

I added layers to my timeline for various aspects of my care (rheumaKelly's Medical - Publictologists, diagnosis, symptoms, treatments, treatments for eyes specifically, etc.).  I wanted the layers because I wanted to have them all on one timeline but I wanted to be able to separate out the various aspects of my history.  I could have done this on other free sites by creating a separate timeline for each “layer” but I chose to pay the $29 so that I could have it all on one.

You can see my timeline here (including how the list view displays below the graphical view).  This is a “public” one that I removed the actual doctor names and changed it to match how I refer to them on the blog (my rheumatologists have been “Dr. A”, “Dr. B”, “Dr. C” while my ophthalmologist has been “Dr. O”, etc.).  The public one is a copy of my actual one that went through the end of 2014.  I’ve continued updating my private one to add the new treatments from Dr. D in Philly and plan to keep going on the timeline.

So I encourage you – get your own damn records because they can’t be trusted to keep them clean and clean them up yourself!  And even if you do have great medical providers that can be trusted – you may have so many of them and medical records that are pages and pages long and from separate medical systems around town – gather them together and clean them up for yourself!

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