Knowledge Management Tools for Patients

Photo of a pill organizer set. Each day is a different colour. Monday is red, Tuesday is yellow, Wednesday is green, Thursday is blue, Friday is purple, Saturday is pink, Sunday is orange. There are four slots for each day. Morning, Noon, Evening and Bedtime.

First off, if you’re here looking for these tools, I’m so sorry. It means you have the kind of illness or disability where the doctors do tests and shrug. Or you have the shrug version of a diagnosis where they don’t actually treat you and you have to come up with your own treatment plan. Those with IBS, food intolerances, chemical sensitivities, fibromyalgia, CFS, ME, autism, hyper mobility and anything deemed as rare know what I’m talking about. Maybe you are going through the fun game of specialist hot potato where they throw you onto the next one while yelling, “Not me!” You also might live in one of the many countries where you simply can’t afford to visit a specialist or have to wait for years to get into a free one. Or they don’t have any in your area and you can’t afford to travel. So, my apologies for the lack of medical care and problem solving doctors you’ve encountered so far. Hopefully these tools can make it a little easier for you to get answers and Sherlock your way into some meaningful treatment plans and proper diagnoses.

I’ll be adding more to this because I have more tools that I’ve used to figure out how to maintain myself. I’ll announce them on twitter from @erin. These tools are meant to be free. They are not to be sold. Don’t be that guy.

Medical History and Summary

This is to correlate your data and history to get a big picture view of various events and tests that they might not have seen all in one place. If you have access to all your labs, you can include all your abnormal results. Write out the things that they have already tested and diagnoses abandoned. There are instructions on how to fill this out in the Word document. You should be able to open Word documents on Linux systems and Apple. I made this in Pages so the formatting will be off. Currently WordPress is not letting me upload Pages documents and I need to figure that out. I have included a PDF for those who need to have it printed for them and filled out by hand that contains no instructions as well as one with instructions for those with programs that let you edit PDFs. If you edit this in Word or Pages it will update the table of contents pages for you automatically.

Screenshot of a document. Has a blue line with Name: underneath. Then the title Medical History. Subtitle Prepared for: Your Doctor's Name. Month, Day, Year.
Screenshot of a document. Blue line on top with Name: underneath.
What you are trying to get them to understand or look into. Refer to the sections you want them to pay most attention to below and correlations you’ve made from looking at your data. This document is not like a symptom log. This is to correlate your data and history to get a big picture view of various events and tests that they might not have seen all in one place. You should definitely have both.
Two columns. Column one:
Current treatments
-Anything you do for yourself
-Treatments from professionals
-Things you avoid
-Stuff you think is making you better even if it’s not considered a treatment
Column two:
-Prescribed medications
Contains table with three headings and information underneath. 
Diagnosis/Symptom: Actual diagnoses	
Doctor: Who diagnosed you or list of doctors	
Date and details: High level details you want the doctor to be aware of including the dates. Anything you disagree with.

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