Thursday, October 24, 2013

iwCLL 2013: My Advice to Patients about their Therapy and How to Talk with Your Doctors: Shared Decision Making

It was a delight for me to be asked by Andrew Schorr on behalf of Patient Power to be interviewed in order to share the patient's perspective on how to use all the news from iwCLL 2013 in Cologne, Germany.

I particularly like the way he took the trouble to highlight some of my points with the superimposed text.

Over the next weeks, I will have many more informative interviews to post with Drs. Kipps, Kay, Furman, Hallek and others, but I thought I would first let you hear my counsel on how to best deal with your doctor appointments.

In the meantime, please let me know what you think of my suggestions and please add your own tips and advice to the communal discussion.

This is a tricky time. So many new CLL therapies on the way, but none of them are here today, except of course in clinical trials. The right approach will be different for each and every one of us. I hope this video gives some ideas on how to have the conversations that best inform our decisions.

My recommendations touch on "share decision making" or SDM, a critical and growing part of every patients' and doctors' future. It is even incentivized in the Affordable Care Act. Here one link that has a nice general discussion and video.

video

iwCLL 2013 Cologne, Germany

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2 Comments:

Anonymous Anonymous said...

Thank you, Brian. Great information!

October 24, 2013 at 7:58 PM  
Anonymous Bonnie said...

True, we don't choose the diagnosis, but I think we do choose the attitude toward the diagnosis and life, as the first and third commenters have demonstrated. In our quest to lead meaningful, happy lives, some of our colleagues may even find inspiration. But we will have to tolerate that, realizing that although we are all interconnected, we are also all different. It has taken me almost a lifetime to learn to graciously accept
the well-meaning comments of those who tell me I am an inspiration to them, when I know I am only doing my best to live a productive life, and have plenty of imperfections
and shortcomings to overcome.

October 25, 2013 at 12:14 PM  

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