[This is a reblog of a post on the #LCSM blog. Reposted with permission]
The focus for the next #LCSM Chat at 8 PM Eastern (5 PM Pacific) on Thursday, February 27, 2014 will be “What do cancer patients want from their doctors and online support groups?” The moderator will be Dr. Jack West.
Online cancer support groups can provide a wealth of information and understanding for cancer patients, caregivers, and family members. Many in online forums find expertise and credibility among others who have traveled down the same road. “Expert patients” in these forums can provide an understanding and hope that even the best doctor can’t offer, because they’re living proof you can understand your treatment options, and your treatment can work. And online groups are available 24/7, for free.
However, different patients seek out different levels of information, both in these forums and with their doctors. Some want to know all the available facts, including survival data in the tables and figures shared among oncologists. Others prefer to trust their doctors and hope for good results. This leaves doctors wondering if providing a frank discussion of statistics (which might not be encouraging) would inform, confuse, or scare patients.
Also, different patients are comfortable with different levels of self-advocacy. Some express a strong desire for self-determination of their treatments, while others want a clear recommendation from a trusted oncologist about the a best way to proceed.
Given the diversity in cancer patient needs and wants, our upcoming #LCSM tweetchat on will focus on the following questions:
1) Do the shared experiences of patients provide value and credibility that can’t come from medical professionals?
2) Given the growing movement to give patients their data, should doctors share stats like survival numbers with the patients? If so, when?
3) Do engaged, empowered patients want a clear recommendation from their doctor, or a presentation of pros and cons so they can choose among the options?
We hope that those of you who use Twitter as a communication tool will join us by following the hashtag #LCSM on Thursday. Feel free to also comment here, before or after the tweet chat.
Upcoming #LCSM chat: What do patients want and need from online networks and their doctors?
by Dr. Jack West on cancergrace.org
ePatients: Engaging Patients in Their Own Care by Medscape
Society for Participatory Medicine
Are physicians ready for the e-patient movement? on KevinMD.com