Community Forum Archive
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 thebettles on Sat, 2011-01-22 - 02:45
Hello epi_help,
"thank you for asking the questions..."
You are welcome.
I have quite a few more below that have still gone unanswered.
If I am not able to get answers to these diary questions in this thread, where would you direct me?
Thank you in advance for directing me to someone who may know more about how data is culled and resorted from our unidentifiable profile inputs.
Thanks,
marty
Hello epi_help,
"thank you for asking the questions..."
You are welcome.
I have quite a few more below that have still gone unanswered.
If I am not able to get answers to these diary questions in this thread, where would you direct me?
Thank you in advance for directing me to someone who may know more about how data is culled and resorted from our unidentifiable profile inputs.
Thanks,
marty
Re: Welcome to My Epilepsy Diary!
Submitted by thebettles on Sun, 2011-01-23 - 17:01
I am wanting to take control, to a tiny degree, by having you answer just a single question below:
who can you direct me to that may be able to tell me more about how our personal information is pulled from the diary and from forums like this one?
it is a simple question- it is why this thread, that you started, exists in the first place, to answer questions about the diary.
please continue to help as you had started to help just a week ago...
thank you,
marty
I am wanting to take control, to a tiny degree, by having you answer just a single question below:
who can you direct me to that may be able to tell me more about how our personal information is pulled from the diary and from forums like this one?
it is a simple question- it is why this thread, that you started, exists in the first place, to answer questions about the diary.
please continue to help as you had started to help just a week ago...
thank you,
marty
Re: Welcome to My Epilepsy Diary!
Submitted by thebettles on Sat, 2011-01-22 - 02:46
Hi epi_help,
I was hoping you were going to continue to be helpful in showing how and why it is safe to use the Diary section.
Can you at least answer this question:
Why can you not simply explain how it is ETP ensures our personal information is not identifiable when it pulls information from sections like the Diary and the forums?
It seems to me that in order to make any sense out of information, like how many people are taking a certain medication, or how a specific side effect "plays through", essential details about the individual are somewhat necessary in order to make the data of any relevance.
Is the actual name of the person necessary, no.
So is that what ETP is doing?
Simply dropping the name from the collection of data, then basically every other bit of relevant info is fair game? How could it be any other way if the whole point of collecting information is to make sense of what it means in comparison to other individuals to get a bigger picture.
Please help me out if I am off base here.
thanks in advance,
marty
Hi epi_help,
I was hoping you were going to continue to be helpful in showing how and why it is safe to use the Diary section.
Can you at least answer this question:
Why can you not simply explain how it is ETP ensures our personal information is not identifiable when it pulls information from sections like the Diary and the forums?
It seems to me that in order to make any sense out of information, like how many people are taking a certain medication, or how a specific side effect "plays through", essential details about the individual are somewhat necessary in order to make the data of any relevance.
Is the actual name of the person necessary, no.
So is that what ETP is doing?
Simply dropping the name from the collection of data, then basically every other bit of relevant info is fair game? How could it be any other way if the whole point of collecting information is to make sense of what it means in comparison to other individuals to get a bigger picture.
Please help me out if I am off base here.
thanks in advance,
marty