1 (edited by PCL1029 Mon, 14 May 2012 08:42:17)

Topic: Taxonomy of patient users-cancer pt,internet info.&clinical encounter

Hi,everyone,
I find something interesting in ASCO2012 ebook that is related to our site.
It is written by Paul R. Helft MD.
From this article by a practice doctor;you know knowledge is useful in requiring the doctor to keep current to answer your evdence-base questions getting from Internet resources,like our message board .But as a patient ,you also should know the most efficient way to get your answer and execute them thru of your doctors.ie: send them email in advance about your concern before appt.
I think in this way,Internet usage will be of benefit to both the patient and doctor

The Seeker
Mr. B is a 63-year-old man with newly diagnosed intrahepatic
cholangiocarcinoma. When he was first seen, he had a
palpable mass; he was subsequently found to have a large
adenocarcinoma replacing much of his atrophied left lobe of
the liver, with extension into the right lobe. As time passes
during his treatment, to which he has a major partial
response, he raises issues he has encountered on the Internet,
mostly after prompts from fellow patients he communicates
with on the Cholangiocarcinoma.org message boards.
One of the potential advantages of access to the Internet
in the context of illness is that patients with uncommon
cancers can form relationships online with other patients
despite geographical and other barriers. For many patients,
this ability to share experiences with other patients with the
same disease is valuable and can provide an important
source of emotional support. That said, I have found such
Internet sources frequently lead to questions from patients
that suggest they have difficulty sorting out what applies to
them and what does not, having heard suggestions from
other patients with the same diagnosis but whose circumstances
may be radically different. Mr. B thus asks questions
at each clinic encounter such as, “One of the patients
from my message board had a liver transplant for his
cholangiocarcinoma. Can I have a liver transplant?” At other
times, he raises questions about clinical trials, hepatic
intra-arterial infusion therapy, and surgical resection, all
stimulated by comments from other patients. Each time he
considers new information, such comments lead him to seek
further information from other Internet sources and he asks
clarification of his oncologist.
Suggestions for management of Mr. B’s continued questions
include focusing on the treatment options he raises and
how they apply to patients in different circumstances, and
explaining how these options have already been considered
and why they do or do not specifically apply to him. The
important message from both of these communicative suggestions
is that the physician recognizes and validates the
importance of the issues to him (and thus the discussion of
them validates the sense that the physician is willing to
explore other options with him). This discussion can be an
opportunity to subtly reinforce the physician’s competence,
as such questions enable the physician to show that he or
she has already carefully considered the options raised.
Finally, recognizing the importance of such online experiences
for the patient can represent a meaningful occasion for
validating the patient’s efforts to continue to investigate and
understand his disease and options fully.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Taxonomy of patient users-cancer pt,internet info.&clinical encounter

Thank you for this Percy.

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: Taxonomy of patient users-cancer pt,internet info.&clinical encounter

Dr. Helft is quite aware of our organization and I am pleased to read his postive comments re: our discussion board.
Dr. Helft is the Director, Fairbanks Center for Medical Ethics.  He was panel member at last years Patient Advocate Symposium, which I attended.   
Thank you Dr. Helft and thank you Percy for bringing this article to our attention.
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

4 (edited by PCL1029 Mon, 14 May 2012 16:08:40)

Re: Taxonomy of patient users-cancer pt,internet info.&clinical encounter

Hi,
Thanks ,Gavin,
I was preparing for the ASCO 2012 convention and came across this article.
It is a lot of articles to read in preparing for such event. I glanced over the entire ebook they put up on the web; and only a few articles is related to bile ducts ,liver and the pancrease.
They will release the posters on the web tomorrow and I will do the same to look them over and choose the one that is related to our disease and try to ask the author if  I will see them at the convention.
this year,they change the policy about putting all posters up at the same time;ASCO will put up the "most regarded" or " important or distinguish" posters each day to increase the attention of those highlighted research article.
and follow by a discussion sessions.
I will also attend a session about "the new drugs in oncology"-including Vemurafenab;Crizotinib;Brentuximab;Abiraterone;Ipilimumab and Axitinib.
I think only one or two will be of great interest to us for CCA;but down the road,they maybe of use to us as well since most of them are for treating solid tumors.
Be sure to say hi to your mum for me,it is warmer and sunny to-day here in Chicago. and I know the weather is not that inviting;but you got the Prince of Wale to be your weatherman.I am sure his royal touch of the weather will be magical. It should be sunny and bright with a gentle wind blowing  from the sea.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.