Hitting the Sweet Spot
When we started CLL Topics Updates last January it was very much an experiment. We needed a new format and a new vehicle for the service we have provided for the last seven years, one that was more automated and easily maintained. We also thought the time was right for an interactive forum, where questions could be asked and answered. Thus, Updates was born.
On July 1, we asked you for your opinions on a variety of questions related to this site. We received 488 responses to our survey, a little less than one quarter of our registered subscribers. When no vote was cast for a specific question, I scored it as “not applicable” or “N/A”.
Generally, the responses were quite positive. Without further ado, here are our results.
I would like to address a few of your responses specifically.
6. The follow-up discussion
We have been pleased by the questions asked, and the helpful responses from our members. Remember that the quality of the follow-up discussion is largely in your hands.
I would like to point out a new feature, which some may not have seen. If you enjoy following the discussions, you can see which posts have new comments since you have last visited Updates. You can do this by clicking on the “Latest Comments” link in the Navigation section of the left-hand sidebar.
7. The look and feel of the site
We encourage you to help improve the site — please use our feedback form to let us know what you would like to see, or what you are having difficulty with. If your question or comment relates to the usability of the site itself, it’s best to address your feedback to me (Radha) directly.
I would like to take this opportunity to address a few issues common to many of our readers.
Some folks are not aware of the “Your Profile” link, also in the Navigation section of the left-hand sidebar. Try it out! You can control your account settings, including your password, your email address and your contact information. Don’t forget to hit the “Update Profile” button at the bottom of the page to save your settings if you make changes.
If you need to use the “forgot my password” feature of Updates, I know that many of you are irritated by the long, gobbledygook password the system auto-generates. This is a WordPress function that we do not have control over. You are certainly not expected to remember it! You should log in with that emergency password, then change your password to something better right away using the “Your Profile” link. There are no restrictions on the length or complexity of the password you choose, so by all means pick one that you can easily remember.
When you do log in, it is quite useful to click the “Remember Me” check box on the login page. It stores your password for 10 days, not quite long enough to free you from ever having to remember your password, but still helpful.
I think most people have been pleased with the email alerts our system sends out when we publish new articles. But if you want to turn off these notification emails, you can un-check the “Receive notification emails for new articles” option on the Your Profile page.
Again, I would like to emphasize that if you have trouble with any of this, please let me know! As Webmaster, my job is to keep all of you in touch with the information you need. I do have a day-job so I may not be able to respond to your emails immediately, but I try to get back to everyone within 24 hours.
We’d like to thank everyone who took the time to respond to our survey. It was also a test of our home-made survey software, which seems to have worked perfectly!
Thanks,
Radha
31 comments on "Results: Half-Time Survey"
Radha,
I enjoyed a recent dinner with your Mom in Orlando. You guys run an outstanding service. Thanks and please know how much you are appreciated.
Cary
Looks like the Topics Update has hit a “Home Run”. Keep up the good work, God bless you.
Radha,
I certainly appreciate all the work you put into this site as Webmaster! So I sincerely “Thank You!” for all you do!
I’ve had no trouble navigating the site, and the information is truly valuable. I’m currently in remission so my attention is mostly focused elsewhere, but it is important to me to know that this information will be there — up to date, reliable, understandable — when I need it. Thanks to you both.
Though I repeat myself over and over, I look forward to “Updates”. I appreciate all your work.
Blessings,
Rita
I don’t believe Webmasters are appreciated enough for the effort it takes to maintain a Website. Thank you, Radha, for keeping a site that means a great deal to the “CLL” community running smoothly.
Jim
Radha
Thank you ever so much for your help as webmaster. The information from your Mother is so vitally important to all of us CLLers and without your help we would not get to see it. We appreciate both of you & your help for us.
Anne
God loves you and we love you. Thank you!
Thanks, Radha, for your effective and well utilized web-mastering skills.
I somehow missed the survey, but this is the only website about CLL that I read. Three years ago when I was first looking for info I spent lots of time online looking at different sites, then I found this one, and it’s the only one I need. Everything is covered here, even familial CLL, which is not really recognized too much. Thank you for your site. It’s great.
I missed the survey too, but this is a great website. You do a terrific job.
Thank you both for your efforts. I’d like to echo Laura b and janet above: this is the only website I read. I’m in remission as well, so my attention is often elsewhere, but the reminders keep me updated on the important “stuff” to keep me from being too forgetful. It’s easy to become complacent and maybe even arrogant when in remission.
Jane Marie
I couldn’t wish for anybody better in my corner that you, LLS, and MDA.
Steve
I missed the survey also and would have given top scores in all categories. I’ve tried some web design and have to say this website is one of the most lovely I spend time at. It is easy to navigate, and there’s a “soothing” quality in the layout, fonts, and the carefully selected images that appear here and there. For me, this is really important, as visiting the site takes me into a sometimes scary reality that I try to compartmentalize as I also try to lead a “normal” life. Rhada, you and your family have done, and are doing, a wonderful service for those of us on the CLL adventure. Thank you so very much!
Lynn
Rhada,
I have had absolutely no trouble navigating the site. My husband has CLL and this website is the first place I go when I have questions. You all cover everything, and you highlight the important points so it is easy for us to immediately understand its applicability. I cannot thank you and your mother enough for all you do for the CLL community.
Myka
Hello,
Found this informative and unscary.
Don’t know what others feel, but do myself not want to be pushed into a sepatate “cancer community”, which is my experience here in GB. Here people were only too keen on diagnosing me, and then “transferring” me to a “Centre”. I am not ill, and no treatment is needed or planned. What it does do, accidentally being diagnosed, then pushed through invasive tests, at breakneck speed, is only to scare and damage, both patient and their family; particularly having been “assured”, the nasty “thing”, is something neither I not doctors would have suspected for years yet. So little proper information, other than that there will be all sorts of professional supporteres available, has been forthcoming. Most f the professionals have treated me as if I have a mental illness, or am mentally incompetent.
Thanks for plain information both about the ilness and the various “options”; at least one will be able to counter some of the suggestions.
Thamks and good luck
Mette
CLL Topics is a great site. I feel very lucky to be a part of it. Thanks.
This site is brilliant both as regards content and usability. Know that you are appreciated, not only in the US of A, but across the water too!
Lawrence
(Cornwall, England)
your site is so brillant and informative and I thank your for everything you send. keep up the good work. someday you will be a part of the cure we are all looking for. thank you Brenda Hueston
TREMENDOUS!
Barry
Thank you for all you do.
Kodirea,
I missed the survey but it’s Number One in every way! It’s the only site I go for information now and I also take some of it to my doctor who is also interested in it. Thank you so much for all the work put into it. It is appreciated every day.
Grace
Radha,
That you are carrying on this work is so appreciated by those of us with CLL. We clearly need the balance that you and your mother offer of scientifically-supported information, coupled with common sense (which isn’t so common these days). This is truly the future of information-sharing related to any health concern, and you folks are absolutely on the cutting edge. Thanks for everything that you do every day.
mjdphillips
This is one of the better sites in which I find information for my disease and am able to pass it on to others so they too can be informed. I am very grateful for all the time and effort you and your mother put into this research for us. It is very helpful to me and my family. Thank you so much.
Blessings.
Anita
I too seem to keep repeating myself but I am so grateful for all that is done to keep this web site available. I am a better informed patient because of this website. Needless to say you don’t get the detailed information from a Dr that I get here. I also think having the comment section from others who have this affliction also help me in that I am not alone. I just can’t tell you how important this website is to me. I appreciate all the time the family takes to keep providing all of us out here with information. May you be blessed.
Nassar
Actually I Cant express my thanks for you that this website it is very helpful for many peoples and this site is trustful for my peoples in my country
I am most grateful for the existence of this high-level website. I’m only in Stage I, but I’ve learned ever so much. And I’ve recommended the site to others as well. Wish I knew my oncologist’s email, I would send it to him too.
Thank you so much!! In my opinion, this site is fantastic! Very easy to navigate and very informative.
Please, keep up the fantastic work!
Maryann
Radha,
I am remembering you and your mom.
Thank you for a great site!
It is easy for me to navigate. I do not consider myself to be a power computer user.
Radha
I echo the comments of many others. This is easily the best CLL site that I have found and has been a source of much helpful information and encouragement. Thank you both for continuing to provide this service to CLLers across the globe. Blessings,
Piers – from Mt Beauty in Australia
Your site is the corner stone of my cll knowedg base. Without it my anxity level would finish me before the cll! With Love & Appreceation, Stan W.
Leave a Comment