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Get in Rhythm. Stay in Rhythm.™ View Replays from Atrial Fibrillation Patient Conference Aug 4-6, 2017, in Dallas, TX
Get in Rhythm. Stay in Rhythm.™ View Replays from Atrial Fibrillation Patient Conference Aug 4-6, 2017, in Dallas, TX

New Tool Lets You Track Your Atrial Fibrillation Patient Experiences

myLifeLog Lets You Enter Your Afib Information and Share It with Your Healthcare Providers

By Mellanie True Hills

The atrial fibrillation patient community is invited to try myLifeLog, an application for tracking afib experiences.

Here's some background. One of my wishes has been for the afib community to have a way to capture information that can help us identify trends and help us get a handle on this condition. Some of that happens anecdotally in our discussion forums and communities, but there is more that we can do. By aggregating de-identified information across the country, and even the world, we can pick up clusters of things that a doctor may only see once, but that occur many times across the entire afib community. I thought I was going to have to invest in building such a tool, until I met the folks at Rule90 Technologies.

Rule90 had a vision of helping doctors see information from afib patients beyond what is in their electronic health records in order to help doctors get a handle on each patient's experience. They started three years ago building an application called myLifeLog. They worked with a cardiologist and an electrophysiologist to build the application and beta test it with their patients. Now it is ready for rollout.

Doctors and hospitals ask their patients to follow a link, create an account, and fill in their information, and then the doctor will have access to the patient's information to track what is happening—episodes, symptoms, responses to medications, quality of life, etc. I expect this to be a useful tool for doctors to provide an enhanced level of care for the afib community.

In working with Rule90, we as a community have the opportunity to use this same tool. Where a doctor normally gets the reports generated from use of the tool, Rule90 will make it possible for us, the patient community, to generate our own reports, which you can take to your doctor in printed form or can allow him or her to access online.

To get started creating your own repository of data, go to myLifeLog and click on "Create New Account." Enter the information requested and click on "Create Account." You will then go through an extensive series of questions to help you enter your data. Expect to spend several hours entering data, especially if you have had afib for a long time. You can, however, save your work and come back to it.

This is not meant to be a short-term trial, but instead to be a permanent repository for you to track your afib experiences and share this with your doctors. And at any time you can revoke access by a specific doctor if you decide to change doctors.

Please take a moment to read the Privacy/Security/Legal content linked at the bottom of the application. Rule90 Technologies is providing myLifeLog for use by the atrial fibrillation community at no charge. StopAfib.org is simply making the afib community aware that it is available. We have no financial connection, nor legal liability, for this application. We are simply trying to help the afib community get a handle on things that doctors are not yet aware of and to influence research into this condition.

Just so you're aware, your personal data is stored in Rule90's data center, not out in the "cloud" somewhere. That was important to me to clarify. Also, I will not see any of your information. It is private, for you only, or for your doctor if you wish to share it. What we hope to do when there are many patients in the repository is to see aggregated (de-identified) data to identify trends through data mining.

If you need help with the application, click on the "Need Help" button, fill in the appropriate information on the right side of the screen, and click on "Send E-mail" to get help.

To download or print your report, click on the "My Account" button, select "Download My Report" from the menu on the left, and you should be offered the option to download and save it, or open it with Adobe Reader.

What we would love is your help in providing feedback on the application, and your ideas are welcome. Please send your feedback to myLifeLog Support. I have already provided some feedback, and we're anxious to get your feedback as well. (The Rule90 folks may not know what they are getting themselves into with us.)

I hope we will soon be able to see environmental relationships as well.

Please feel free to post your thoughts in the StopAfib forum, but most general questions, help requests, and feedback should go through the channels listed above.

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Last Modified November 9, 2010

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