Have you taken the new survey?

[Lisa Salberg]

Hi, As of this morning 446 people have submitted survey results. First let me thank you all for taking the time to complete the survey if you have already done so! If you have not please take a moment to complete the survey a link is located on the home page or you may have a copy in your inbox under the email address you registered to this message board with.
WHY is it important to take the time to complete this survey? The HCMA is in growth mode - we are looking for the most effective ways to improve, empower and assist patient care and overall HCM understanding both at home and in the doctors office. Your input helps paint a clear picture of who we are, what are needs are and what we need to do as an organization.

I am THRILLED that a clean 50% of respondents thus far have never called the HCMA office... Thrilled you may wonder...why would this Thrill me? Because it proves that there are thousands of people who have not called yet have important stories to share and important infomation about their HCM that will help us help more people. So if you are a lurker... a poster... a caller we need to hear from you via this survey!

Thank you all for your time, assistance, input and your obvious caring for your families and the greater HCM family.
here is the link to the survey.

http://vovici.com/wsb.dll/s/ca61g22958

Have a great day... I will keep you posted on the count as the survey progresses. It would be great if we could get over 1000 respondants!

Lisa

[Chuck]

Yes, I did...

and it needs some tweaking. There are oodles of questions there that require an "not-applicable" response, but none is available.
Most of these are about implants. I believe the first question on implants is "do you have one?"...it should be designed so that if the respondant answers "no", the next 20 or so questions are skipped.
but I was forced to tell you what year I had mine installed, among other things. (I don't have one!). But I couldn't continue the survey without giving a bogus answer.
Anyway...just wanted to point that out, if no one else already has. The data collected will be of limited value if those parts can't be filtered out.

[Lisa Salberg]

Yes we found that problem and corrected it. This required the first 70 people to have additional surveys sent to them for adjustment.
Interestingly for those techies who like back end info - this survey collects over 1000 data points - we maxed out the system - due to this fact the system only permits a set amount of data and one way to get all the questions in was to add the N/A responce rather then a break to a different question (as each action is a data point). When we evaluate the data we can "filter out" the N/A's so they do not alter the data inappropriately.
As of now... we have 490... Come on folks we can hit 1000 cant we????

Thanks,
Lisa

[goldie]

I tried tried to do the survey, but the implant questions are throwing me off since my husband doesn't have an implant. I can get pass these questions without putting in wrong data.

[Lisa Salberg]

This glitch was fixed... then seems to break again... we are working on this right now... gotta love computers!
Lisa

[HuskerJeff]

Lisa - I recieved 2 invites to take the survey (I receive 2 of most of the emails the HCMA sends out). Surely you don't want more than one datapoint per person, right?

If I'm any indication, maybe you have a better participation than you think :)

(Please PM me if I can help to remove one of the duplicates of my email addr - for the record, they both come to the same address)

Jeff

[JudyA]

Regarding the survey- after your reminder I went to take the survey. so far so good. Then about half way through I hit a glitch in the survey- it will not accept a NO answer for having a device- if you say NO- it asks you many questions about a device you do not have, and then will not proceed without an answer. Something for our technical person to sort out I'm sure. Has anyone else had this problem? It skews the total results.....

My computer froze mid survey, so I will wait to retake it when I hear about this issue.

JudyA

[mtlieb]

Lisa,

I was able to finish the survey just fine but found some parts of it just a bit awkwardly worded. As I recall I did have to fudge a few answers just so that I could continue on. I think I'm going to take it again without actually finishing it, to see if I may offer some input. Can I assume that as long as I don't complete the survery in full, that it will not be transmitted and/or skew the data?

Overall though, you've done a great job with it and the end-result should be provide you with very useful information. :cool:

Jim

[Lisa Salberg]

Judy,
Fixed it... the tech guy feels that there was a CASHE problem with AOL and that should be cleared up now.

Jim - this is a monster of a survey and while we thought we had every issues thought out... we did miss a few. The good news is over 85% have given us contact information should we have any questions and we will be reviewing each response one at a time and making sure the data is CLEAN.

I can already give you a hint that many of our observations here at the office are proving to be based in fact... I do not want to tip my hand and alter the way anyone answers but I think this survey is going to answer a great deal of issues... it is really turning out well.

Dont let fear hold you back get out there and answer the survey if you have not already done so - we are now up to 540 and counting....

[shirleymahoney]

I did mine had no problems

Shirley

[Lisa Salberg]

580 surveys...and counting.
Have you submitted yours??

[Chuck]

its gotta be more than just "the first 70". I took it just before my original post to the thread...which was after you posted that 446 had taken it.

do I need to re-do it?

[Lisa Salberg]

I stand corrected.... it was the first 70 who had ICD's and that needed correcting... at this point 30% of you have answered that you have an ICD. Those who needed correction have recieved a follow up survey and as of this morning we had about 35 of them in...
Thanks!
Lisa

[Lisa Salberg]

Just an update... we have 695 surveys as of the time of this post!
We hope to gather 1000 - so if you have not taken the survey yet please do. It has been live for 8 days and the response has been wonderful so thank you all - let just get 300 more and then we will get to work planning our future programs!

Thanks to all!
Lisa

[Lisa Salberg]

Good news.. we are at 719 as of now! Thanks
We have heard from every state with the exception of Hawaii. Keep them coming!

Lisa

[Lisa Salberg]

Good news.. we are at 719 as of now! Thanks
We have heard from every state with the exception of Hawaii. Keep them coming!

Lisa

[SheilaGail]

Just completed it. I couldnt get the phone number to enter so i skilled over it and said no. If anyone had any questions for me I would be glad to anwser.

[Lisa Salberg]

736 and counting!

Thanks everyone...keep them coming.

A special note to new visitors and those whom only read the board and are not reistered - there is a link on the home page to the survey - we want to here from you too! Please take a few minutes to help us help you and your families better!

A special note to those whom have lost loved ones - this survey is for you too, we want to learn about your loved one so that we may better help people in the future. While we wish we could turn back the hands of time and return your loved one to you it is simply not possible - but WE can help save others by sharing information so please tell us about those whom you have lost to HCM and let your loved one live on by helping others!

Hoping to hear from you all!

Lisa

[Lisa Salberg]

747 and counting... You guys are great keep them coming...

I am off the computer for the rest of the day. It was Adam's B-day yesterday the family is coming over so it is PARTY TIME!

Lisa

[Lisa Salberg]

Good morning - 766 and counting!
Thanks again. Keep them coming!!
Lisa

[caroline]

I tried to take the survey 3 times and each time it demanded a date for the implant I never had. I find it amazing the survey insists I have an implant just as the MDs do. Well, I disagree---so I guess my data will be left out of the survey-----------

[Lisa Salberg]

There is a number at the bottom of each page of the survey to call if you have a problem, I wish you had called us so that we may assist you. Please restart your computer and try using the link from the home page of the site. A few people had the same problem and even when attempting again they ran into the same issue, even after the programming correction was made, the tech people claim that the cashe on each persons computer or at the IP address has made the old survey 'hang around' thus turning off the computer and restarting and using the link on the home page should correct the problem.
If you still have a problem you can call the office and do the survey over the phone with a staff member. It should take 10 minutes or less.

Good news is we are up to 801 - keep them coming!

Lisa

[CardioClay]

I TOOK IT!! I first tried in school, but then the period ended. It asked about insurance which I had no clue about, I did the best I could.

-Jamie

[mtlieb]

A special note to those whom have lost loved ones - this survey is for you too, we want to learn about your loved one so that we may better help people in the future.
Good point, Lisa. I hadn't even thought about filling one out for my dad.

Is it appropriate to complete the survey even if they were diagnosed posthumously?

Jim

[RRKamm]

I took the survey with no problems, but I do have an ICD so the answer there was yes and I had answers to all subsequent questions.

[Reenie]

Jim, I would think that if they were diagnosed then it's appropriate.

Reenie

[Dawn-C]

I took the survey for my mother who had HOCM's and a myectomy. I had trouble with some of it because my mother died from pancreatic caner almost 2 years ago. I wish there was a comment box at the end to add a short note about the 'odd' info that wasn't covered in survey.

Mom was a late onset of HOCM's and after her myectomy never had issues with her heart. Her battle with this monster was easy. But the next monster (cancer) took her in 4 short months.

But, thank you very much for letting her be part of this and I hope all of our info will help make a difference.

Dawn

[Lisa Salberg]

833 and counting....

Thanks.

[Deedee]

It's been a while since I tried to do the survey, out of frustrations with not being able to get through it due to bugs, but now there's yet another email asking to please take it, so sure enough I try to come over and do my best to contribute, but while I can finally progress past the surgical question that was stopping progress if you hadn't had surgery, now question 73 is stopping me with this message:

73.1)You must select exactly 1 of the following options

This is a question about which family members were diagnosed/suspected.

What do I click or do to progress past this error?

[mandzia]

Lisa if I have multiple family members with HCM do you want a survey for each person? Or just one per family?
Thanks
Lisa Mandziak

[Cynaburst]

If you have multiple family members, you should fill out a survey for each member.

[shirleymahoney]

Well I just did one for my brother and my neice being they have both passed away from HCM and I think my son has filled one out also so that would make 4 people so far from my family

Shirley