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Portable updateable medical information on a flash drive



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#1 pops6927

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Posted 26 June 2012 - 05:56 PM

I am a 4 time stroke survivor. I use Evernote as my electronic Memory Notebook, set up just like my paper Memory Notebook, because I have much difficulty writing, The notebook is in 7 parts: 1) Schedule 2) Calendar 3) To Do List 4) Notes 5) Strategies 6) How To's 7) Miscellaneous. I capture whiteboard notes in therapy by iPhone image and sync to my home computer to type up later. I have to carry it everywhere; by having it on my iPhone, it is much easier. But,. I keep the hardcopy updated and carry that as well at times too.
I have extensive medical information from all the strokes, a plethora of prescription drugs, non-prescription drugs, lists of what each drug is and does, and have to update. Giving my medical history is a huge challenge esp. when I don't write well at all trying to fill out forms, etc.

I want to convert all this information to a PDF format stored on a USB flashdrive, and have it easily updatable to carry with me. In case of emergency it can be plugged in and printed out all up-to-date. The form would have all the info necessary to provide correct history, meds, etc., not necessarily in the doctor or hosp form format, but they could glean the information from it and transcribe.

How can I do this in a concise and simple form, automating as much as possible for people with little computer skills to still benefit from it? I do have computer skills, but because of the extensive strokes, my organizational and decision-making skills are lacking and requiring me to ask for assistance.

There are many flash drive systems out there charging $$, but few that are update-able. How can we integrate Evernote to become the de facto standard to use by the majority of people to maintain their health records accurately and for emergencies?

Thank you,

Pops

George C. Fassett, Sr.
7405 Laurelhill Court S.
Fort Worth, Tx. 76133



About Me: http://about.me/pops6927
YAWYE: http://www.smokingme...s/show/15/yawye

Stroke Strategies!: http://www.facebook....213365988760723

Email: pops6927@gmail.com

#2 GrumpyMonkey

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Posted 26 June 2012 - 06:23 PM

I am a 4 time stroke survivor. I use Evernote as my electronic Memory Notebook, set up just like my paper Memory Notebook, because I have much difficulty writing, The notebook is in 7 parts: 1) Schedule 2) Calendar 3) To Do List 4) Notes 5) Strategies 6) How To's 7) Miscellaneous. I capture whiteboard notes in therapy by iPhone image and sync to my home computer to type up later. I have to carry it everywhere; by having it on my iPhone, it is much easier. But,. I keep the hardcopy updated and carry that as well at times too.
I have extensive medical information from all the strokes, a plethora of prescription drugs, non-prescription drugs, lists of what each drug is and does, and have to update. Giving my medical history is a huge challenge esp. when I don't write well at all trying to fill out forms, etc.

I want to convert all this information to a PDF format stored on a USB flashdrive, and have it easily updatable to carry with me. In case of emergency it can be plugged in and printed out all up-to-date. The form would have all the info necessary to provide correct history, meds, etc., not necessarily in the doctor or hosp form format, but they could glean the information from it and transcribe.

How can I do this in a concise and simple form, automating as much as possible for people with little computer skills to still benefit from it? I do have computer skills, but because of the extensive strokes, my organizational and decision-making skills are lacking and requiring me to ask for assistance.

There are many flash drive systems out there charging $$, but few that are update-able. How can we integrate Evernote to become the de facto standard to use by the majority of people to maintain their health records accurately and for emergencies?

Thank you,

Pops

George C. Fassett, Sr.
7405 Laurelhill Court S.
Fort Worth, Tx. 76133



About Me: http://about.me/pops6927
YAWYE: http://www.smokingme...s/show/15/yawye

Stroke Strategies!: http://www.facebook....213365988760723

Email: pops6927@gmail.com


Hi Pops. Congratulations on surviving these health challenges, taking charge of your care, and sharing your experiences with others. This is quite inspirational! I don't think I have a good answer to your question, though.

First, just to get this out of the way, Evernote is not HIPAA-compliant and does not at this time have any plans to become so (http://discussion.ev...__20#entry30333). Let's not get the conversation off track by heading down that road! There are plenty of threads already to talk about encryption and the like. Let's assume here that you want a reasonable degree of security, but are comfortable with a process that is not HIPAA compliant.

So, back to your topic. I think what you are asking (please correct me if I am wrong) is how you can take all of the data you have collected about your medical history, put that into a single document, and export that as a PDF. Does this sound right? I am going to rephrase this to say that you want a way to convey all of your information to staff in a clear and concise way so that you don't have to write it out for them all of the time, but you also want them to have access to every detail as well, if they should need to see it.

If it were me, I think I might consider making a single "master" note with a summary of each item (for example, doctor visits) and an Evernote note link to the details of that case. Keep the most recent stuff at the top, and just keep adding to the note.

Prescriptions
(1) 100mg of ***** three times per day.
(2) 300mg of YYY once per day.

--------------------

2012-06-26 Weekly Checkup
- Seen by Doctor John Smith (212-555-0909) at New York General Hospital
- Dr. Smith said ***** and recommended that I consider taking YYY to treat the symptom. He checked with my current medications and there are no conflicts.
- For details, see note X (link here), note Y, and note Z.

2012-06-19 Weekly Checkup

- Seen by Doctor Jane Doe (212-555-1111) at New York General Hospital. My regular physician, Dr. Smith, was unavailable.
- Dr. Doe said ***** and recommended that I consider taking YYY to treat the symptom. She checked with my current medications and there are no conflicts.
- For details, see note A (link here), note B, and note C.

Perhaps the best way to do this, would be to keep all of your medical records in a shared notebook. When you go to the hospital, you could just give them a link to that notebook, and they could access it. You could type this onto the back of a name card and hand it to the staff. When the staff enters the link, they will be taken to your main note, which ought to have the main information that they need. Your physician, though, could learn more by clicking on any of the links inside in order to learn more about the case. These could include links to the whiteboard photos, photos of prescription bottles, scanned prescription slips, etc.

For an idea of how this might work, please see the link in my signature. Obviously, I have just ported my website into a shared notebook, but the process works the same. If you wanted to, you could export this notebook as html files and stick it on a thumb drive. This would work EXACTLY the same way, but without the need for Internet access. As far as security/privacy goes, the shared notebook is reasonably secure, because Google does not index the content and no one knows about the address unless you tell them. Someone could guess the address if they were so inclined and motivated enough to look for it, though. Would this address your needs?

#3 idoc

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Posted 02 July 2012 - 11:31 PM

Hi Pops,
The simplest way of doing this is to have a different pdf's which reflect changes in your condition. For example, you could set up a note in Word or in EN in which you document your: history of present illness, family history, social history, medications, previous surgeries, all current diagnoses, hospitalizations etc. If you have a significant change you can update that document and then save it as a new pdf with the appropriate date. Therefore, someone who is looking into that flash drive will see several pdf's which represent the chronology of your condition. If they simply want a snapshot of you on that particular day they will look only at the last pdf. However, if they want to see how things progressed over time they have the option of looking back at the others. The alternative to doing this is simply to use one pdf and to update it every time your condition changes in any way. This way you will be constantly overwriting what's there but it is quite simple. If you are using EN you could have these pdf's instantly available on your smart phone (using dropbox or a number of other apps) instead of carrying around a flash drive.

#4 heather

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Posted 02 July 2012 - 11:34 PM

While we would love Evernote to be integrated into every lifestyle need, there isn't a solution for everything *yet*. In the meantime, keep the ideas coming and let's help out Pops!

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#5 UncleKyle

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Posted 20 September 2012 - 02:46 AM

I am also in the process of doing this for my 14th month old daughter. She has a rare genetic disorder and has spent quite a few weeks in hospitals. Her journey through life will not be easy and I'm in the process of trying to organize all medical bills and records in Evernote. I also will be updating her medical records onto USB flash drives for everyone in the family to carry. I'm not sure it will be an up to date process for those flash drives, I'm thinking I'll have to do everything manually as of right now. If I figure out a different solution, I'll let you know!

Kyle

#6 TechBarber

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Posted 21 September 2012 - 12:34 PM

I am also in the process of doing this for my 14th month old daughter. She has a rare genetic disorder and has spent quite a few weeks in hospitals. Her journey through life will not be easy and I'm in the process of trying to organize all medical bills and records in Evernote. I also will be updating her medical records onto USB flash drives for everyone in the family to carry. I'm not sure it will be an up to date process for those flash drives, I'm thinking I'll have to do everything manually as of right now. If I figure out a different solution, I'll let you know!

Kyle


Hi Kyle,

What about putting the content you were going to put onto USB flash drives into a shared Evernote notebook?

If you shared the notebook with your family they would have pretty much real-time access to anything you put in there, and you wouldn't have to worry about keeping any other sources (i.e. USB Key) up to date. Everything would be in the shared EN notebook and anytime someone wanted an update they could check the notebook. I suppose it depends on how frequent the updates are, but you could even send out an email to people each time you update the EN shared notebook.

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#7 UncleKyle

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Posted 21 September 2012 - 04:02 PM

TechBarber,

That would sound great in theory, but I can't even get my wife to look at our shared notebooks. Some of the family members I'm giving the USB drives to don't even have smart phones and wouldn't even know how to turn on an iPhone much less use Evernote. Instead, I just want them to hand the USB stick to a doctor and not have to worry about shared notebooks in a time of emergency. It will just be up to me to keep those USB sticks up to date. Thanks!

#8 BurgersNFries

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Posted 21 September 2012 - 04:08 PM

Hi Kyle,

What about putting the content you were going to put onto USB flash drives into a shared Evernote notebook?

If you shared the notebook with your family they would have pretty much real-time access to anything you put in there, and you wouldn't have to worry about keeping any other sources (i.e. USB Key) up to date. Everything would be in the shared EN notebook and anytime someone wanted an update they could check the notebook. I suppose it depends on how frequent the updates are, but you could even send out an email to people each time you update the EN shared notebook.


I think an additional concern was/is if/when there is no Internet access or it's highly restricted (like in a bank).
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#9 TechBarber

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Posted 24 September 2012 - 12:20 PM

TechBarber,

That would sound great in theory, but I can't even get my wife to look at our shared notebooks. Some of the family members I'm giving the USB drives to don't even have smart phones and wouldn't even know how to turn on an iPhone much less use Evernote. Instead, I just want them to hand the USB stick to a doctor and not have to worry about shared notebooks in a time of emergency. It will just be up to me to keep those USB sticks up to date. Thanks!


Ahh yes....the "possible-but-not-learned" situation :D

Unfortunately, that's the way it works sometimes.

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#10 GrumpyMonkey

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Posted 24 September 2012 - 12:58 PM

I don't think a USB stick is a good idea. Where are you going to stick it into your iPhone or iPad?

And, in my experience, people are increasingly leery about sticking them into their computers. I know I don't let anyone stick USB drives into mine. It's a huge security risk (think Stuxnet), and a lot of institutions are banning their use. Just the other day I tried to get a file to a librarian and could not because: (1) they wouldn't allow USB drives into their machines, (2) they could not give out their email address, and (3) they would not download anything from the Internet. Maybe they would have viewed my Evernote notebook. I don't know. I didn't think of it then :)

NON-EVERNOTE USERS: Send them a link and they can just click to "view" a notebook. It is that easy. There is no need for them to look at it every day, but if there is an emergency, they know where to go and find everything they need.

EVERNOTE USERS: They get alerted every time you update something. There is no need for them to look at it every day, but if there is an emergency, they know where to go and find everything they need.

#11 nearlyalwayswright

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Posted 08 October 2012 - 12:50 AM

Just coming across this topic. I love Evernote, but it can't cover everything. In summary, you have two needs: One is getting important emergency information to a provider, and the other is keeping track of the details of the health information you've acquired. I'd second the comments others have regarding using USB sticks, as those can be potential sources of viral (the computer type, not human type!) infections. Plus, you always need to have the flashdrive on your body (or others remember to carry their copy with them).

For the first, I'd suggest something that's on your body. The known standard is the MedicAlert. My mother-in-law wears a MedicAlert bracelet. It's $45 to join and $45 per year for renewal. I know (from their website) that they store emergency contacts, medications, allergies, implantable devices, physician and insurance information. Personally to me, the logo screams out "I have a problem!" to any one looking at the id, rather than "look at me for information". I don't know what the information looks like to an emergency responder. I believe it's a phone call to get the emergency information.

I use a RoadID which serves the same function, but is marketed towards people who are active in sports (like cyclists) who want to carry identification, but there's no reason why anyone can't use this. My main function is for emergency contact as I row and wanted a water tolerant ID, for those times I row alone. Here's the link: http://www.roadid.co...n/Products.aspx

If you pay and use for the Interactive version, which is for example has a slim bracelet (like a "cause" bracelet") which is $15.99, and includes one year of interactive service, with renewals of 9.99 per year after that. The interactive bracelet can have some very basic info on it (like emergency phone number) but also includes a phone number and web link to your profile, using the serial and pin number which are on the reverse (covered by your wrist). The interactive information I think includes everything in Medicalert, such meds, phone numbers and names for multiple docs and family members, medical conditions, advanced directives, and essentially all information can be supplemented with notes. Also, your profile information can be printed to a PDF, then saved to Evernote, and you could reference that PDF file in a Shared Notebook by putting the URL in the Miscellaneous Section of RoadID. So, you could use the RoadID as your primary data entry point, then periodically update your PDF in Evernote. RoadID is missing a lab values section, and you might want to use your Evernote Notebook for that, and maybe use Evernote to keep old details of physician visits. Evernote might also be a good place to include your notarized/witnessed copy of your Living Will and Advanced Directives.

In the cheapest version of this, you could get the RoadID non-interactive version, or any other engraved dogtag or ID, and include the URL to your Evernote Notebook, but then if the URL changes because you've rearranged your Evernote, you're out of luck. Also, the large hospital system I work with locks out many sites for security purposes. I *think* but am not sure that Evernote is one of those locked out sites; fortunately, as i use Evernote extensively for reference material, I can access it with my iPad through the guest wifi.





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