Health eHeart Study

Hi all!

I'll be participating in a study on mobile technology, as for instance smartphone apps, social media and state-of-the-art devices and how they help to monitor your heart's health. Thought this might be of interest for some of you, too. You can read more about the study, and sign up for it at:
https://www.health-eheartstudy.org/

And there's also an article about it at:
http://online.wsj.com/article/SB10001424127887324323904578368572640617966.html

Inga

13 Comments

thanks

by Tracey_E - 2013-03-25 09:03:44

I signed up, too. Thanks for the link

Hmm...

by golden_snitch - 2013-03-26 01:03:06

Don, I think I don't get what makes you so upset about this study. I think it's pretty much straight forward and it's open to everyone. The intention is simply to find out how mobile technology, social media and state-of-the-art devices can help monitor cardiac health, and then based on these data, how cardiac care can be improved. According to the website, the goals are:

"Develop new and more accurate ways to predict heart disease based on measurements, behavior patterns, genetics, and family and medical history

Understand the causes of heart disease (including heart attack, stroke, heart failure, atrial fibrillation, and diabetes) and find new ways to prevent it

Create personalized tools you can use yourself to forecast when you might develop heart disease or, if you have it already, when you might be getting worse."

Makes sense to me.

Inga

Wait'll I get a response to my e-mail.

by donr - 2013-03-26 02:03:25

Maybe I won't be upset, but right now I'm kinda peeved.

Don

huh

by Tracey_E - 2013-03-26 04:03:11

I didn't read that much into it! I thought they just wanted to study people over a long period of time, with and without heart disease. I have heart disease, not the typical one everyone thinks of but still technically heart disease. The questionnaire is very thorough, I can see how it would be an interesting study over a lot of years. It asks about lifestyle, family history, etc, all the factors that influence heart disease.

My email to them was actually about medication, it's not addressed on the survey but being on it affected a few of my replies. She said another survey was coming soon that would ask about medications.

That's great, Tracey!

by golden_snitch - 2013-03-26 05:03:51

I also shared the link with my facebook-"family", and with the facebook-group for young pacemaker patients. Would be great, if lots of people - with or without heart disease - sign up for it.

The usual suspects

by donr - 2013-03-26 08:03:16

Inga: Just went & read the linked web site.

As usual, it really seems to cover plumbing/mechanical issues - not electrical ones.

The interesting part is that the principle investigator, Dr. Olgin, has arrhythmias as an area of interest.

I sent them an e-mail asking about this. Will be interesting to see what kind of answer I get & when. Since they are in San Francisco on the Pacific Coast, they have not even killed the alarm clock for the first time this AM. (But you have finished lunch)

Don

electrical

by Tracey_E - 2013-03-26 09:03:17

Don, in the survey it includes electrical problems. Emailed them a question after finishing it and they replied right away.

Why did three of us...

by donr - 2013-03-26 10:03:15

...have to ask? Why was it not explicit in the web site?

Why, if two of us had the same question & rec'd an answer, did it take the third one of us to trigger info about it here?

Maybe, just maybe, the three e-mails will trigger them into making some amendments to the website. They just might get the idea that they are missing an entire subset of cardiac disease people.

I specifically told them where I heard about the study & suggested that they come here & see this thread.

Let's hope.

Don

Don

by golden_snitch - 2013-03-26 10:03:45

I e-mailed them, too, and got a reply within less than 24 hours. The study even includes people without heart disease. If you sign up and go through the questionnaire, there's one where you need to fill out, if you have some sort of implanted device, have ever had a catheter ablation etc. So, it also covers those aspects.

Inga

Don

by golden_snitch - 2013-03-26 11:03:37

Oh, I forgot to say that I didn't ask the question about electrical problems. I had watched the video (from the newspaper article), and that stated that this whole study is for people with and without heart disease. So, I knew that I could participate. I had to sent them an e-mail, because I accidentaly indicated that I had coronary artery disease - only realized when I got a questionnaire on that -, and wanted this to be corrected.

Inga

Add

by golden_snitch - 2013-03-26 11:03:52

By the way, it says on the website (homepage) that:
"Anyone can join — we're looking for people with and without heart disease." So, why shouldn't that include people with arrhythmias?

Inga

Commentary on study

by donr - 2013-03-26 12:03:09

Unfortunately, we all have "Heart Disease." Just not the form that is either plumbing or mechanical.

We fall into the crack that most people shove us into. The average bear does not even realize we exist. Look at the numbers of members who have psychological problems w/ adjusting to having a PM/ICD. Many of us have died but only to be resurrected & made bionic. We cannot easily get insurance. For those of us who make the transition to bionicness (New word) we lead normal lives. (Careful around ElectricFrank, he almost denies that he even has a PM ; tempts fate w/ every step.)

Actually they should be operating a separate section for electric people. Since I asked the specific question, I'll wait till I get the answer from them before passing final judgment.

Look at the three different ideas we have had about their intentions (Tracey, Inga & Don).

Don

Be one in a million

by ksig - 2013-03-27 01:03:45

I have a pacer just like most of you and I want to do my part to stomp out heart disease. I have AFib and have had 4 ablations, one of which was the AV Node.

I am quite familiar with the Health eHeart study and Dr. Olgin. He is a practicing electrophysiologist at UCSF in San Francisco, CA. Inga provided an excellent summary of the study as well as giving this community a published reference. I would hope that ALL of you will sign up to be part of the study.

Dr. Olgin would like to enroll 1 million people for this study. These people do not have to have heart disease, just the commitment to participate and have a smart phone. I admit that is a lofty number to achieve but it will be done. Our collective data will provide usable information to Dr. Olgin and his team to better to understand the heart. I will be part of the study as long as I can still operate a smart phone. Many people before us have given their time (Framingham study) and now it it ours. Be one in that million.

https://www.health-eheartstudy.org/

ksig

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