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Video Guide: Introducing Heart Valve Journals 2.0

By Adam Pick on October 6, 2014

In connection with the recent relaunch of HeartValveSurgery.com, I am excited to introduce you to Heart Valve Journals 2.0. As you may know, Heart Valve Journals (HVJ) is a special online community of patients, their family members and friends. We started HVJ, in 2009, to help patients meet and learn from each other. Since then, HVJ has helped 1000’s of people — from diagnosis through recovery.

To help you learn about all the new features and capabilities of Heart Valve Journals community, I made this video guide.

Again, I want to thank all the community members for their feedback, support, encouragement and… criticism.

Through your comments, we will continue to make Heart Valve Journals a special place for patients, their families and their friends — before, during and after surgery.

Keep on tickin!
Adam

P.S. Here is a written transcript of my video:

Hey everybody! It’s Adam and I am very excited to introduce you to the next generation of Heart Valve Journals. As some of you may know, Heart Valve Journals is a special online community for patients, their family members and their friends. It’s a way for people to connect and learn from each other. When we started this all the way back in 2009, we didn’t really know what was going to happen, but we learned quickly that people truly appreciate these types of connections when they’re going through a surgical process specific to heart valve disease. Today, I’m going to introduce you to some of the great new features that we’ve been working on and I’m also going to share with you the ways in which Heart Valve Journals has stayed exactly the same. To get started, let’s take a look at the Heart Valve Journals community. You can access it by clicking the My Community Button. Here you can see at our Start page that we’ve done our best to make things very easy. For new users, they can watch a video in 60 seconds to learn what we’re all about.

We’ve also included pictures and posts of the members of our community. Here’s John and Lulu and Joan, Janet and Holly and for people who are wanting to become part of our community, for the first time we’ve integrated with Facebook. Why did we do that? Facebook has hundreds of millions of users and now with just a click of a button, patients can get started. It’s really that easy. Now for members of our community who’ve already been using Heart Valve Journals, we’ve asked you to sign in using your email address and your password. Why is that? That’s because those two pieces of information will help us identify you and access all of your guest books, photos and journals that you’ve already put up at the site. With all the posts going on in our community, the journals, the guest books, the photos – I’ve really struggled with finding a way to make meaning of it all. How could we possibly collect all that information and put it somewhere so that it was accessible to everybody in our community?

One way to solve that problem is to create a Patient Newsfeed. Here from the Start page, you can click on this button that says News. You can click See Patient Updates or you can go to the top My Community tab and then click the link that says Patient Updates. When you do that, you’re going to see a real time collection of posts by the members of our community. Here’s John talking about his angiogram. Here’s a guest book post for David. Here Aubrey writes to me. Christine gets a guest book post and Janet here is posting a journal. You’re also going to see something new here. Let’s look at Janet’s. For the first time, we’ve created a comment system where Eleanor, Ruth, Janet and Janet again are using this comment system to create a conversation amongst themselves. This is definitely new. This is definitely different. We’re really excited about it because it’s already having a great effect.

For the first time, I’m very happy to announce our Upcoming Surgery Section. The patients have been asking me about creating something like this for years and I’m thrilled because now if you want to see which members of our community are going in for surgery next and you want to learn about them, and/or you want to support them through the process, all you need to do is click their links. There’s one other thing you should know about the Newsfeed. Here it is. If for any reason you don’t want to see all the activity that’s going on in the Newsfeed, all you have to do is click the See Newest Patient Journals and just like the old version, all you’ll see are the latest posts that were made by each of the members of our community. It’s really that simple.

We’ve talked about some of the ways that Heart Valve Journals is different in the new website, but there are many features that remain almost the same. Let’s take a look at Erica’s Journal. Again you’ll notice it’s very similar to how it looked in the past, but now for the first time, I’m going to show you a new comment feature that we have. Here’s Erica talking about pre-op testing and guess what happens next? The members of our community get to share their experiences relative to Erica’s topic. Myself, Laurie, Laura, Kenny and Joan and Erica herself are having an exchange to help her through this process and help each other. The other thing that has been a huge, huge help for our patients and caregivers is the Guest Book. This is where friends and family come to give our patients words of encouragement and love. Again, you’ll notice pretty much the same except for yep, you guessed it – not here’s an opportunity where Erica gets not only posts from people like Gina and Jim, but in addition, she’s getting comments. Again, she’s learning, everybody’s learning together and they’re connecting in a new way.

Now let’s look at one of my favorite sections of Heart Valve Journals which is the Photo Section where we get to see all the patients, their family members and their friends. To show you the new My Photo Section, we’re going to go ahead and click on David’s Photos. Here you can see the gallery is really easy to use. When you click on it, now not only do you get a bigger version of the picture which will be coming up in a second here, but what you’re also going to be able to do is you’ll comment. Then if you want to move on and look at his other pictures, you can simply do that. That’s the new My Photo Section.

Now let’s talk about another new feature, the My Story section. To show you the new My Story section, let’s go ahead and we’re just going to pick Erica. Let’s go to her journal and when we get there, if you scroll across the top navigation for Erica, you’ll see something that says My Story. This is new and this is something that’s been asked for again for quite some time by our patients and our community. When you click that button, you are going to get to learn a lot of great information from Erica that she’s provided us. She tells us that she’s from Avon Lake, Ohio, when her surgery date is, the fact that she has aortic stenosis, her surgeon is Dr. Lars Svensson and she’s going to have her procedure done at the Cleveland Clinic. Then you also get to see that Erica spends some time telling you in her own words, what her story is and some of these can be as small as two sentences and I’ve seen some of these as much as five paragraphs. This is the new My Story section.

One more great feature to talk about is this button right here which is Follow Me. Your friends and your family members, they can come here and click that button. They can insert their email and when they do that, they’re going to be notified by email the moment you post a journal. Another thing we heard from our community members was that they wanted to have more control over their account and their account settings, including privacy. We created something known as The Control Panel. From this one location which can access from the Newsfeed or you can use the drop down menu right here, you can do a whole lot of stuff. You can post a journal, you can upload a picture, and you can edit your My Story. This is again, super-neat – you just click and insert information and this populates on your My Story page. The other thing is privacy. This didn’t exist in the last Heart Valve Journals and now thanks to your feedback, you can turn on and off notifications. You can remove yourself from the search engines. You can go ahead, if you don’t want to be in the newsfeed, you can simply opt out of it. That’s a feature we created for Terry. Again, we want everybody to be super comfortable when they’re using Heart Valve Journals.

There’s still more you can do. You can change your profile settings. Something that I really enjoy is inviting family and friends. We now have some patients who have over 200 subscribers. How do you know who your subscribers are? You simply go and click your See My Subscribers and they appear. If at any time, you want to simply just delete your journal, all it takes now is a simple click of the button.

One of the final features I want to share with you is something that’s brand new and it relates to how patients, their family members and friends will know when a posting has occurred specific to them or something they’ve commented on. If you notice over here in the upper right hand corner, for members who are logged in, there’s a little red heart and a six next to it. What this is is our new Notifications System. When you click that icon, what’s going to happen is you’re going to see certain posts that were just put up in connection to thinks that you’re interested in. When you click on that post, you get to see the thread that you have previously commented on. Here I commented on Erica’s post on her pre-op and then Susan came and she was curious to know about the new valve that Erica had. Then Erica came back and she talked as well. This is the new Notifications System.

There you have it. Those are some of the highlights of Heart Valve Journals 2.0. I would like to extend a humongous, a gigantic, and a tremendous thank you to all the members of our community for your encouragement, your support, your feedback and yes, your criticism. I realize that as we’ve rolled out this new platform, it hasn’t always been smooth sailing, but I do want you to know that through the hiccups, I’m trying my best to make sure that Heart Valve Journals is not only a special place for you, but it’s beneficial to you. From the moment that you’re diagnosed to the moment that you feel recovered, for that I extend a huge apology for any problems that it’s caused as we’ve released this program. I also want to thank you for your patience. On that note, I’ll end as I always do with… Keep on tickin!

Written by Adam Pick
- Patient & Website Founder

Written by Adam Pick - Patient & Website Founder

Adam Pick is a heart valve patient and author of The Patient's Guide To Heart Valve Surgery. In 2006, Adam founded HeartValveSurgery.com to educate and empower patients. This award-winning website has helped over 10 million people fight heart valve disease. Adam has been featured by the American Heart Association and Medical News Today.

Edith Dim says on January 14th, 2015 at 1:35 am

Thank you, Adam, for letting me know about the Journal.
I had the TEE procedure on Dec.4, 2014, and on Dec.17, 2014, my cardiologist told me that I had severe aortic stenosis and would need to have the aortic valve replaced…open heart surgery. It was the last three words that stunned me because I turned 88 years old last July. No one thinks that I am that old because I look younger, and move around so lively, but my birth certificate is right!
I have an appointment with a thoracic surgeon this Thursday, Jan. 15 to have him review the CD of the TEE, so I can have a second opinion.
I am hoping, and praying that he will say that I can have the minimally invasive surgery, but I am aware that it isn’t alway possible.
In any case, I will not be able to have any surgery while I am a higher dosage of prednisone, which I am now. I have had Giant Cell Arteritis
since 1994, and on prednisone for a little over 19 yrs of that time. I will never be off of it, and it has to be be lowered very gradually to where I was before I had some temple pain. That said, I will have to have the catherization before any surgery to determine how my arteries are. I guess you valve replacement patients had to have that, too. I am not worried about that, but I am terribly frightened about open heart surgery at my age.
I have read your about your experiences, and how well you have been recovering from your surgeries, and am also aware that you are many years younger than I. Due to the fact that I have a wheelchair bound 91 year old husband at home, God bless him, I cannot consider traveling away from home where I would be able to go to one of the best hospitals on the list that Adam supplied.
Wow, I am sorry that I had to be so lengthy, but it is good to share with those of you who have had the surgery, and those that are waiting to have it. I wish all of you well. I will write again to tell you what the surgeon tells me. He has an excellent reputation in the Scottsdale, Phoenix, Az area, but does not operate at the #2 ranked hospital. He is in the Aetna Medicare Network, which is a big financial factor. If he wasn’t, I would still want the best.
I am posting as Edith, but to family and friends, I am “Edie.” 🙂