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The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
Welcome to My Epilepsy Diary!
Sat, 10/31/2009 - 07:53Hi everyone!
I hope you've had the chance to try out the new and revised My EpilepsyDiary. I hope you find it as easy to use as I do. There's a new video on the home page that will show you how to get started, as well as a detailed help section. We hope these help you get started with your own diary - create one to help monitor and track your own epilepsy. If you're a parent or other caregiver you can start one for your loved one with seizures! If you run into any problems and need some live help - send an email to - webmaster@epilepsytherapyproject.org or patty@epilepsytherapyproject.org. Or post questions or concerns right here. I'll be checking this frequently and will get right back to you.
We welcome all feedback - what's working well, what's not, and what you'd like to see in the future. The Diary was created for you, so please let us know how you feel.
We look forward to hearing from you and don't forget - Take Control!
Best wishes,
Epi_help
Resource Specialist
patty@epilepsytherapyproject.org
Comments
Re: Welcome to My Epilepsy Diary!
Submitted by Anonymous on Mon, 2011-01-17 - 22:05
Re: Welcome to My Epilepsy Diary!
Submitted by thebettles on Tue, 2011-01-18 - 02:54
Hello Epi_Help,
Thank you for responding- at the very bottom you write that you welcome feedback,
Here is some feedback-
I very very much appreciate you tackling this subject matter with me, thank you.
I would like to be able to "define our terms" a bit better maybe if you are okay with that.
Above, when you write, "they may look at groups of data put together..." -Are they actual people of ETP that look at our diaries or are there computer programs that "read" and search for phrases and words and in this way, "collect" data?
If ETP in no way "looks at" anything identifiable, how does it cull important data in the first place?
You write that the data collected is in no way identifiable, nor shared but that ETP looks at data that is "put together" in order to further it's mission statement.
The examples you use are perfect. Collecting unidentifiable data, ETP see how diaries are being created and used, as well as ETP can also collect info on the use of medications and most common side effects.
How?
How does ETP collect data for the last two examples, where there is such an immense wealth of personal data to sort through, especially when the more personal the data is, often the more valuable it is?
For example- you say you do not collect or even look at any identifiable information. What does this mean? (the more specific my descriptions of my symptoms , my side effects, my daily habits and problems that I describe to you, (that ETP now owns), the easier you can create a profile of me)
How do you collect information about something as subjective as medication side effects without delving into extremely personal information?
How does it get kept separate? Why does it get kept separate when it seems like the more specific details for each unidentifiable individual the better.
Who "grants" and "funds" and "supports" ETP that in turn receives all this unidentifiable information? I may need to submit FOIA paperwork for this but I thought I would at least ask.
Let us pretend that all this information collected and resorted and stored IS actually completely unidentifiable.
Do you agree that to have access to this incredibly detailed information is quite valuable?
It seems exceptionally valuable when in regards to the mission statement of ETP.
I think it is valuable enough to start a website that offers information and strategies and forums and a diary, all in the hopes that tens of thousands of users will begin to give, free of charge, detailed accounts of their daily lives.
Thank you, epi_help, for your support in helping all of us understand how we make this site happen together.
much love,
marty
Hello Epi_Help,
Thank you for responding- at the very bottom you write that you welcome feedback,
Here is some feedback-
I very very much appreciate you tackling this subject matter with me, thank you.
I would like to be able to "define our terms" a bit better maybe if you are okay with that.
Above, when you write, "they may look at groups of data put together..." -Are they actual people of ETP that look at our diaries or are there computer programs that "read" and search for phrases and words and in this way, "collect" data?
If ETP in no way "looks at" anything identifiable, how does it cull important data in the first place?
You write that the data collected is in no way identifiable, nor shared but that ETP looks at data that is "put together" in order to further it's mission statement.
The examples you use are perfect. Collecting unidentifiable data, ETP see how diaries are being created and used, as well as ETP can also collect info on the use of medications and most common side effects.
How?
How does ETP collect data for the last two examples, where there is such an immense wealth of personal data to sort through, especially when the more personal the data is, often the more valuable it is?
For example- you say you do not collect or even look at any identifiable information. What does this mean? (the more specific my descriptions of my symptoms , my side effects, my daily habits and problems that I describe to you, (that ETP now owns), the easier you can create a profile of me)
How do you collect information about something as subjective as medication side effects without delving into extremely personal information?
How does it get kept separate? Why does it get kept separate when it seems like the more specific details for each unidentifiable individual the better.
Who "grants" and "funds" and "supports" ETP that in turn receives all this unidentifiable information? I may need to submit FOIA paperwork for this but I thought I would at least ask.
Let us pretend that all this information collected and resorted and stored IS actually completely unidentifiable.
Do you agree that to have access to this incredibly detailed information is quite valuable?
It seems exceptionally valuable when in regards to the mission statement of ETP.
I think it is valuable enough to start a website that offers information and strategies and forums and a diary, all in the hopes that tens of thousands of users will begin to give, free of charge, detailed accounts of their daily lives.
Thank you, epi_help, for your support in helping all of us understand how we make this site happen together.
much love,
marty
Re: Welcome to My Epilepsy Diary!
Submitted by thebettles on Mon, 2011-01-17 - 17:57
Hello epi_help,
I am confused by your use of the term "diary".
Is it really "My" diary, or is it your diary? Reading the terms and conditions of this website, I think anything I type in to "My" diary section will be owned by ETP and affiliates and partners. Am I correct?
If you would be so kind, epi_help, to describe in detail what is done with the information "aggregated" for your "partners" and "affiliates" and "agents" from our diaries....
Why do they want to know about what is in our diaries? How could our personal seizure information possibly be of any use to a bunch of pharmaceutical companies and techno-medical industrialists?
Or are you saying that information typed into this diary, or any part of this website, is actually confidential?
Is the point of "My Epilepsy Diary" to benefit me and my ability to control my seizures or to collect and aggregate extraordinarily valuable information from patients dealing with seizures and seizure control?
If the diary section is solely to benefit me, and there is no reason to extort my personal information to third parties for profit, then why do you do it? Why is there no ability to simply turn off the capability of ETP and partners to own all information whatsoever typed into the diary section of the website?
A defining characteristic of a diary is its secrecy or confidentiality.
Maybe rename the section, "Here is where I write my most personal information about my medical issue, not because it may benefit me, but because it hugely benefits capitalism".
Not very catchy. Maybe just stick with My Epilepsy Diary, and hope not too many people catch on...
Of course, with patients now having the incredible benefit of allowing a doctor to read their "diary", I doubt there is much backlash.
Any one out there care that ETP exists largely to distribute your personal information to its affiliates?
How exactly did ETP get started and who funded it, I am curious?
I am also curious if there will be any response from EPI_HELP. I sure hope so.
Any one out there want an answer to these questions?
much love,
marty
Hello epi_help,
I am confused by your use of the term "diary".
Is it really "My" diary, or is it your diary? Reading the terms and conditions of this website, I think anything I type in to "My" diary section will be owned by ETP and affiliates and partners. Am I correct?
If you would be so kind, epi_help, to describe in detail what is done with the information "aggregated" for your "partners" and "affiliates" and "agents" from our diaries....
Why do they want to know about what is in our diaries? How could our personal seizure information possibly be of any use to a bunch of pharmaceutical companies and techno-medical industrialists?
Or are you saying that information typed into this diary, or any part of this website, is actually confidential?
Is the point of "My Epilepsy Diary" to benefit me and my ability to control my seizures or to collect and aggregate extraordinarily valuable information from patients dealing with seizures and seizure control?
If the diary section is solely to benefit me, and there is no reason to extort my personal information to third parties for profit, then why do you do it? Why is there no ability to simply turn off the capability of ETP and partners to own all information whatsoever typed into the diary section of the website?
A defining characteristic of a diary is its secrecy or confidentiality.
Maybe rename the section, "Here is where I write my most personal information about my medical issue, not because it may benefit me, but because it hugely benefits capitalism".
Not very catchy. Maybe just stick with My Epilepsy Diary, and hope not too many people catch on...
Of course, with patients now having the incredible benefit of allowing a doctor to read their "diary", I doubt there is much backlash.
Any one out there care that ETP exists largely to distribute your personal information to its affiliates?
How exactly did ETP get started and who funded it, I am curious?
I am also curious if there will be any response from EPI_HELP. I sure hope so.
Any one out there want an answer to these questions?
much love,
marty