Topic: Informing patients and local physicians

Given the rarity of this cancer, too many local GI doc's, local oncologists, and local GP's simply are not aware of this cancer. But, this vital, initial contact sets the course of treatment for the patient.  In order to fix this broken link, CCF is in the process of addressing the local community physicians with educational videos and general outreach via e-mail, conference attendances and other means of communication. 

Patients and caregivers can aid this process by informing their treating physicians of this site and the resources available to all i.e. the biliary book (downloadable as well and free of charge in printed version,) the Mayo Research Project, the biliary emergency information card, the CCF International Patient Registry and all other pertinent information listed on our website. (Please know that we are working on refinement of several links.)

We are developing an updated version of the “Newly Diagnosed” section.  Amongst other important information we will address the criteria for liver transplantations as well as the likely exclusion due to percutaneous biopsies/and or biopsies performed at the time of endoscopic ultrasound
As always, we encourage your input on all subjects.

Thanks and hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Informing patients and local physicians

Thanks for that Marion. A very important subject this and I am looking forward to seeing the newly updated Newly Diagnosed section on the site. As for liver transplantation for CC, I know that this is not an option for patients here in the UK unfortunately.

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Informing patients and local physicians

Is it possible to get cards with foundation information to put at my oncologists office at The Cleveland Clinic Foundation?
I have him direct patients to the website but it would be nice to have a card in case they forget.

This Information Is Not Intended Nor Implied To Be A Substitute For Professional Medical Advice. You Should Always Seek The Advice Of Your Physician Or Other Qualified Health Care Provider

Re: Informing patients and local physicians

I'm trying to get approval from the hospital to put out cards, but seem to have run into someone with a severe case of lack of interest.  Plus, I'll contact my PCP to see if he is interested.

Something to consider adding to the new section would be a more elaborate description of the other sections, plus the Search function.  This site can be overwhelming to someone wandering through it without a clear idea of what they might find and the best places to look.

Maybe add a description of the various designations, e.g., "moderator".

Add a small vocabulary section.  intrahepatic, extrahepatic, Klatskin's, cyber knife, resection,, metastasis, etc.

Duke

Fighting with dignity, not desperation.

Live, Laugh, Love

Re: Informing patients and local physicians

Lisa....of course.  We have brochures as well as copies of the biliary book etc.   
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Informing patients and local physicians

Duke....the website is not quite completed in fact, the developments are ongoing.  Much more information has to be added.  I must admit that I have been a bit slow at some things, but promise to catch up real soon. 
Had not thought of a vocabulary section, but love the idea and I am sure that the others will as well.
Help.....What else should be added to what already has been mentioned by you?  Perhaps everyone can chime in on this?
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Informing patients and local physicians

Marion -
Just be slow and steady on the new section, recognizing that it will be a work in progress for a while.

Maybe you could go back to say, the beginning of 2014, to Introductions to look for comments from new users to see if they had trouble finding something or had questions.  That should be your target audience for now.

One thing I have noticed is that some Boards seem to get comments from a somewhat limited population even though they are read by many others.

And as I've said before, Gavin's posts on new stuff are tremendous.  How do we "advertise" the Board more?  When you take time to read them, they provide a wealth of new ideas and options.  Do people get overwhelmed before they get that far down in the list of Boards?

If someone out there has experience with web site design, maybe they can chime in with the philosophies/psychology of site design and give Rick some ideas.  This is the only collection of Boards I participate in so I have no specifics in mind.

Duke

Fighting with dignity, not desperation.

Live, Laugh, Love

8 (edited by marions Thu, 26 Jun 2014 09:41:23)

Re: Informing patients and local physicians

Great thoughts, Duke;

As of today, our website notes 259,591 visits, 137,021 unique visitors (50.14% of visits,) Average 5,000 visits to the site a week, 5.53 pages views per visit, 5:31 average minutes on site. 
6640 likes on FB https://www.facebook.com/cholangiocarcinoma
440 followers on Twitter https://twitter.com/curecc
Our discussion board reflects 3,130 registered members, 11,187 topics and 86,750 postings. At times, I noted 80 something viewers and about 20 or so registered users.   These numbers reflect a significant amount of unregistered users perusing our site.  Not sure how this compares to other forums however; based on our statistics, we reach a fairly large patient population however; not all care to engage with us.  Why this is happening, I simply don’t know.   I wonder what it is that we can improve upon?

Research Studies: In comparison to 2005 to those openly available on the internet, we have witnessed a remarkable increase in peer reviewed research studies.  This increase carries over to other pertinent information for our disease as well. However; we must remember although peer reviewed, some studies simply are not good studies.  And, it is for that reason that some physicians are not too keen on patients/caregivers presenting materials they do not agree with or don’t consider comprised of medically sound information.  This “gray area” of medical or other information is unavoidable for our discussion board as none of our posters (very few exceptions) including, the moderators are qualified to determine the validity of such information. 

Moderators:  Our moderators are the most unique, kind, caring people ever encountered.  These wonderful people devote a major portion of their lives to this board where they provide an invaluable service to the global patient/caregiver community.  Unlike other moderated forums and as noted in their disclaimer, our moderators except our KrisV. (licensed nurse)  are not medical professionals.  Their information is based on their own knowledge and personal experience however; it does not reflect the opinion of the Cholangiocarcioma Foundation.   

On another note: I strongly believe that our “Suggestion” thread is underutilized.  How can we encourage our members to share their points of view in the area designated for this purpose? http://www.cholangiocarcinoma.org/punbb … m.php?id=5
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Informing patients and local physicians

Well said Marion, as always! The numbers you talk of about visitors, members, posts etc have soared in all of these years haven't they. Quite amazing really and then you have to consider the people who will come visit, lurk and do not post or join the site. I can understand that as I do than as well on some other sites but they are about finance, markets and economics etc.

Good point about the suggestion thread as well and hopefully everyone will get involved and give their input on things through that.

Hugs to all,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.