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My Epilepsy Diary
Are your patients seizures or medication side effects out of control? You can help your patients take control by using the new My Epilepsy Diary on epilepsy.com. It will help your patient to track their seizures, their medications and their side effects. It will give your patients tools to help them remember to take their pills, keep their doctor appointments and communicate with their medical team.
In my day job, I am a doctor who specializes in epilepsy. In a typical clinic visit for people with seizures, a doctor usually asks how many seizures have the patient has had, what medications are they taking, what side effects have they experienced. This information is used to make a decision on whether to increase, decrease or change medications, or maybe try a different strategy altogether. But how good is the information on which these decisions are based? In some cases, very good. In other cases, not so good, because information is based on very sketchy memories.
An epilepsy diary can help to keep track of seizures, medications, side effects, mood, and other important pieces of information. In the simplest form, a patient could just grab a piece of paper and write down when they had a seizure. But pieces of paper tend to get lost or not brought to clinic visits. It is also hard to see patterns that may be important clues to improving therapy (such as missed doses), or seizures related to specific events or cycles (such as seizures occurring around a woman’s menstrual cycle).
The Epilepsy Therapy Project website, epilepsy.com, and our epilepsy specialists developed a free tool to make organizing epilepsy information easier*. The entire plan is based on years of experience in trying to gather information from patients and families to understand the relationships among seizures, adverse effects, medication, and daily function. The system is designed for simple entry of information, and visual assessment of issues: easy for the patient, family, doctor, and nurse.
When your patient has a seizure, change a medicine or a side effect, your patient can go online and put it in the diary. We've tried to make it as easy as possible to do that. Your patient can put an icon on your browser that will take them to the diary in one click. If they are away from a computer, they can use a smart cell phone to enter the information, just as if they were at your desktop computer. One can print a summary and charts for them to take to their doctor when they have an appointment, including pictures showing how many seizures or side effects occurred over time. All this information will help the doctor figure out the next best move for your patient.
The diary also can be used to give your patient reminders of what pills look like, alarms for when they should take them, and any other clues, such as when their next refill is due or doctor's visit is scheduled. An optional section to enter and print an organized medical history that will be useful to epilepsy clinic doctors can be done for a subset of patients/families with more detailed records and ability to record them in the organized modules.
Here’s how it works:
Today's date is automatically highlighted, but the patient can click on any date in the calendar to record information. Clicking the yes button to "did you have a seizure today?" allows you to pick the type of seizure from a drop-down list. This list was previously constructed in the initial "ABOUT ME" information gathering section.
In the “ABOUT ME” section, patients are guided to give a name and approximate description of each seizure type. These can be edited at any time. Medication doses and regimens can be entered in the MY MEDICINES” section, with pill pictures as reminders.
Soon there will be an optional “MY MEDICAL HISTORY” section will allow you to enter and print an organized medical history that will be useful to epilepsy clinic doctors. It is not required, but may be useful for a subset of patients/families with more detailed records and ability to record a full medical history into the organized modules.
Now let's return to “MY DIARY.” When you click a date to enter a seizure, you then see several choices.
There are options for entering type of seizure, time of the seizure, possible triggers, emotional mood, missed or extra medicine doses. Each day, side effects and severity can be listed. Patients have an option to enter free text in the "MY NOTES" section of the diary and to attach videos, documents or other files to the diary. A reminder section allows people to get e-mails or text messages to remind them of times to take their pills, doctor visits or any other reminder they wish to establish.
My Epilepsy Diary provides a “MY REPORTS” section, with useful charts and tables to be printed and brought to clinic visits. The section defaults to a tabular summary, but can also show graphics.
The patient can display all seizures or particular types, as well as changes in medications and levels of side effects. Events are placed on a customizable timeline. An electronic version of the tables and charts can be pasted by you the physician into your electronic medical record, if one is used in your clinic.
People can enter their information from a cell phone or via the usual browsers. One-click access to the diary makes it convenient. Web-based diaries, in which patients choose to enter data, are not required to have a formal consent process or file HIPPA (Health Insurance Portability and Privacy Act) documents, but we take patient privacy seriously and have extensive safeguards in place for de-identification.
The immediate value of the My Epilepsy Diary is to help your patient organize information before a visit. This should reduce the amount of time you need to spend reporting your seizures, side effects, and medicines to your doctor or nurse. This will leave more time to discuss other vital issues and concerns.
My Epilepsy Diary will help your patients to take control of their epilepsy, as well as make it easier to work with your doctor to understand your problems and move to improve them. In addition to the benefit to your patients, participating in My Epilepsy Diary will benefit the overall epilepsy community. It will make it possible to track (with no linkage to any information that would identify your patient) patterns of seizures, medications, triggers and side effects. This could help researchers to develop better treatments.
Please consider joining the epilepsy.com community of two million people per year who rely on the extensive resources of our website for epilepsy information and for interaction with other people like you.
* together with our programming consultants, Irody, Inc, Eyal Bartfeld President, and Michael Owen, Capitola, California, database programmer
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